The Art of Medical Communication: Bringing the Humanities into Clinical Practice (by Team-IRA) [1 ed.] 1032272724, 9781032272726

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THE ART OF MEDICAL COMMUNICATION

The field of medical humanities is growing rapidly and offers many valuable insights for medical education generally and for enhancing and improving communication specifically. Through practical and thought-provoking examples, this innovative new text demonstrates how engaging with the arts and humanities can benefit the work of doctors and make them better, more effective practitioners with a focus on achieving this through better communication and by stimulating self-reflection. Key Features ●

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Utilises modern and familiar examples, including case studies, to illustrate and explore language and communication skill deployment in a variety of given scenarios Reflects the increasing use of online consultation and the associated importance of ensuring effective communication in virtual settings Describes several models for reflective practice Supported by a selection of eResources to enhance reader experience and understanding; visit www​.routledge​.com ​/9781032272726

This new book is written specifically for medical students, junior doctors, and medical educators looking to develop or teach communication skills. It will instil and support the background understanding of the role, need and ongoing requirement for humanities engagement in self-development, and reflection to enhance and improve the experience of both the practitioner and the patient.

The Art of Medical Communication Bringing the Humanities into Clinical Practice

Charlie Guy

First edition published 2024 by CRC Press 6000 Broken Sound Parkway NW, Suite 300, Boca Raton, FL 33487-2742 and by CRC Press 4 Park Square, Milton Park, Abingdon, Oxon, OX14 4RN CRC Press is an imprint of Taylor & Francis Group, LLC © 2024 Charlie Guy This book contains information obtained from authentic and highly regarded sources. While all reasonable efforts have been made to publish reliable data and information, neither the author[s] nor the publisher can accept any legal responsibility or liability for any errors or omissions that may be made. The publishers wish to make clear that any views or opinions expressed in this book by individual editors, authors or contributors are personal to them and do not necessarily reflect the views/opinions of the publishers. The information or guidance contained in this book is intended for use by medical, scientific or health-care professionals and is provided strictly as a supplement to the medical or other professional’s own judgement, their knowledge of the patient’s medical history, relevant manufacturer’s instructions and the appropriate best practice guidelines. Because of the rapid advances in medical science, any information or advice on dosages, procedures or diagnoses should be independently verified. The reader is strongly urged to consult the relevant national drug formulary and the drug companies’ and device or material manufacturers’ printed instructions, and their websites, before administering or utilizing any of the drugs, devices or materials mentioned in this book. This book does not indicate whether a particular treatment is appropriate or suitable for a particular individual. Ultimately it is the sole responsibility of the medical professional to make his or her own professional judgements, so as to advise and treat patients appropriately. The authors and publishers have also attempted to trace the copyright holders of all material reproduced in this publication and apologize to copyright holders if permission to publish in this form has not been obtained. If any copyright material has not been acknowledged please write and let us know so we may rectify in any future reprint. Except as permitted under U.S. Copyright Law, no part of this book may be reprinted, reproduced, transmitted, or utilized in any form by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying, microfilming, and recording, or in any information storage or retrieval system, without written permission from the publishers. For permission to photocopy or use material electronically from this work, access www​ .copyright​.com or contact the Copyright Clearance Center, Inc. (CCC), 222 Rosewood Drive, Danvers, MA 01923, 978-750-8400. For works that are not available on CCC please contact mpkbookspermissions​@ tandf​.co​​.uk Trademark notice: Product or corporate names may be trademarks or registered trademarks and are used only for identification and explanation without intent to infringe. ISBN: 9781032272733 (hbk) ISBN: 9781032272726 (pbk) ISBN: 9781003292067 (ebk) DOI: 10.1201/9781003292067 Typeset in Sabon by Deanta Global Publishing Services, Chennai, India Access the Support Material: https://www​.routledge​.com​/9781032272726

This work is dedicated to my father, George Clarke (1945–2006), who would have bought 1,000 copies; my sister, Sharna Clarke (1978–2016), who shared my tenacity; and my grandmother, Dora Santavicca (1926–2016), who turned toy soldiers into diamonds. Also, to Hope Dixon, Jack Howarth, and Benjamin Davies – your stories will be great ones.



Contents

Preface ix Acknowledgements xiv Author xv 1 Introduction a. Establishing Rapport – People Are Social Animals b. When Rapport Breaks Down c. The Role of the Humanities within Professional Distancing d. Models of Communication e. Modes of Communication

1 5 8 10 14 19

2 A Definition of the Humanities a. The Two Hemispheres b. C. P. Snow – The Great Divide c. What Can the Humanities Do for Science? d. Cool Story, Poe – Theory of Mind e. The Notes Between the Notes Between the Notes: Talking to Eds Chesters f. Issues of Accessibility

29 31 32 33 39

3 The Role of the Humanities in Medicine Through Time a. Frankenstein, or, the Modern Prometheus (Frankenstein) b. Typhoid Fever: There’s Something About Mary Mallon c. The AIDS Crisis: ‘Art Lives on Forever’ d. Write Your Own Narrative Journey

57 61 64 72 83

46 50



viii   Contents

4 Medical Ethics a. Deontology b. Consequentialism c. Virtue Ethics d. The Ethics of Persuasion e. Fake News – When Storytelling Cancels Science f. The Telephone Game: When Storytelling Goes Wrong g. The Tabloid Press h. Children in the Media

88 94 94 94 103 105 112 113 115

5 Case Scenarios 1 1a: Azzura (Aggie) Romano 1b: Oscar James Thompson 1c: Arnold Gaylor 1d: Nihal Anand 1e: Abby Sable-Adamson

134 135 139 143 147 151

6 The Art of Communication in Practice a. Gillian Lynne – ‘Wriggle Bottom’

154 160

7 Case Scenarios 2 2a: Dermatology 2b: DNACPR 2c: ‘Wild Goose Chase’ 2d: Neurosurgery

162 164 169 173 176

8 The Art of Reflection a. Jean-Dominique Bauby – The Case of Patient A

181 188

9 Reflective Models a. Rolfe et al.’s Three-Stage Model of Reflective Practice (2001) b. Kolb’s Reflective Model of Experiential Learning (1984) c. Gibbs’ Reflective Cycle (1988)

190 190 193 196

10 Conclusion

200

Appendix: Structured Reflective Templates

203

Index 206

Preface

I would like to invite you, for a moment, to consider what the world would be like without the arts and humanities. No theatre, no literature, no television; no music, painting, or poetry; no analysis of history, or understanding of other cultures. The arts and humanities influence our lives on such intricate and personal, and yet also incredibly broad and social, all-encompassing levels, that I find it hard to imagine what my life would be like without my love for them. We live in a science-centred culture and, while the humanities frequently take consideration of the sciences, the sciences can often come across as having tunnel vision. To elaborate upon this, and before we embark upon the rest of our journey together, I thought it might be helpful to share my own, personal experience of stepping into a medical curriculum, from my safety net of the arts. I hold master’s degrees in both English, and Human Anatomy and, alongside my academic career, I have also clocked up almost 15 years of experience working patient-facing administrative roles within the National Health Service (NHS). This mixture of experiences, both academic and professional, has provided me with a unique insight into the worlds of both the arts and the sciences, the benefits to be drawn from each, and the ways our healthcare interactions could be improved if each discipline better learned to communicate with the other. Having spent time within both spheres, it is not an exaggeration to say that I find the communicative divide astonishing.



x   Preface

In 2019, as part of my introductory sessions to medical school, I sat in a seminar room filled with fellow postgraduate students, all of us eager to begin our various scientific pathways, and we were asked the following question: ‘What University have you just graduated from, and what was your degree?’ As a Mexican wave of frighteningly impressive scientific qualifications moved its way around the room – menacingly in my direction – I suddenly felt an overwhelming surge of Imposter Syndrome. What on earth was I doing here, in a room full of neuroscientists and junior medics? And what was I going to say? ‘My background lies in poetry?’ But my background does lie in poetry. And the Gothic, and Romantic; the histories of the cadaver, and of medicine. What I had failed to realise at that moment was that having approached the study of anatomy from a disparate direction to that of a traditional science-related pathway, I was in fact provided with a unique skill set which benefited me greatly – and has continued to do so. For example, while my cohort struggled to memorise myriad muscle attachment points, I was able to fall back on skills of visual mnemonics – much to the bafflement of my colleagues! To show you what I mean, I would like to introduce you to Major Stern, who illustrates the origin and insertion points for, and innervation of, the pectoralis major muscle (see Figure 0.1​).

FIGURE 0.1  Major Stern

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MAJOR STERN – EXPLAINED!

Major Stern wears half a medal across his chest, and there’s a little ant next to his name with six little ant friends – this tells me that the pectoralis major muscle originates at the medial half of the clavicle and the anterior sternum to the sixth costal cartilage. He has lips that pout to the side and a tuba with no sense of humour, which tells me that the pectoralis major muscle inserts at the lateral lip of the intertubercular sulcus of the humerus. The pecky bird is getting on his nerves, and his medal is for lateness – which tells that me the pectoralis major muscle is innervated by the lateral and medial pectoral nerves.

Major Stern might seem, when taken at face value, a little bit silly. But when we look at the way our brains learn and retain new information, he really does make sense – or at least to me. A mnemonic works by linking previously learned, ‘comfortable,’ knowledge to new information you’re trying to recall – and my brain is most comfortable with tasks such as abstract thinking. Over the course of my academic career, I have been trained to look for hidden meanings, nuances, and symbolism – but there isn’t much abstract thinking or symbolism to be found within the study of anatomy. A structure has a name, and a place, and a function – and so I couldn’t think my way around an answer in the same way as I’ve always been used to. I found it incredibly difficult to meaningfully visualise information set out in tables and lists, and so I easily could have floundered. But this superficially silly cartoon man came to my rescue. In a similar vein, anatomical terms became less alien to me as I recognised the Greek and Latin origins behind their names – for example, the talus bone of the ankle (named for Talos, the great automaton of Greek mythology), or the Achilles tendon (named for the hero). I began to notice that my colleagues, without a firm grounding in the arts, were struggling in areas where I flourished. For example, while undertaking a short course on Scientific Communication Skills, we were asked to create a reminiscence activity for older adults living with dementia. I was surprised to see my science-grounded team, all incredibly educated and articulate, brought close to the point of exasperation by the concept of tailoring language to suit an audience. You might be forgiven for thinking that such hiccups are unique to students but, in fact, this is something I’ve witnessed throughout my career – having worked with some exceptional communicators and been party to some very awkward conversations. And it’s an issue which has the potential to affect us all, not only professionally, but also as future patients; just think about your own experiences, or ask your friends which practitioners they remember most vividly: I was in my school uniform so definitely still a child. He looked at us and said, ‘I can’t stand it when the families are here.’ There was only me, my mum, and my dad – who was in heart failure – in the room, so he wasn’t saying it to a

xii   Preface

colleague. A busy man with no tact. Probably a great doctor but no people skills. Just a shame, as I will never forget. – Anon The fact is – bad memories are much easier to remember than good ones.1 There are several reasons for this. Firstly, the novelty of a bad experience makes it stand out to the brain as memorable – but it also makes sense from an evolutionary perspective, as our brains process such interactions as threatening, and we want to be able to protect ourselves in any similar, future situations. But engaging with healthcare professionals should never be considered a threatening situation. It is by effective communication that we can make our patients, their relatives, and friends feel more comfortable in our presence, confident in their treatments, and safer in their autonomy. The arts thrive on interpretation, having an intense ability to improve imagination – and in a facts-based world, imagination is vital. Coordinating multidisciplinary healthcare and involving patients, their families, and friends in decisions about their care and treatment can be extremely difficult. In order for you to become an effective practitioner, you essentially have to become a detective, fitting yourself into someone else’s circumstances to best understand their communicative needs. In the course of your medical career, you will come up against challenges and situations which you may be powerless to mend, but in which the most powerful interactions you can have are the ones in which you show compassion, understanding, and – most importantly – your own humanity. We live in a sciencedominated world, and it is precisely because science is so powerful that we need the humanities. The sciences present us with facts. They provide certainty. The humanities encapsulate the power of ideas, helping us understand the ever-changing world around us and our roles within it. They provide us with uncertainty, doubt, and inquisition – which are especially important when it comes to thinking about what, and who, we are. And yet, despite having the ability to improve problem-solving, communication skills, practitioner empathy, and patient experience, the importance of the humanities within a science-based curriculum is often overlooked. While the sciences thrive on facts, the humanities thrive on abstract ideas and lateral thinking. Medicine can do amazing things – from face transplants to cancer treatments – and it can sometimes feel like medicine can do anything. But medicine can’t – and shouldn’t – do everything. Every individual under your care should be treated as just that – an individual. Diagnosis and prescription cannot be viewed as separate to a more holistic view of the patient as a person. In recent years, the term ‘docsplaining’ has gained significant traction across social media, being the go-to term used to describe patronising or unnecessary explanations by medical staff to non-medical individuals. Knowing how to communicate without ‘docsplaining’ is going to play a key role in

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xiii

your success as a practitioner. As medical professionals, you must understand that you don’t merely treat conditions – but also the people within whom these conditions exist. NOTE 1 Jennifer Warner, Bad Memories Easier to Remember: Negative Memories May Be More Vivid Than Happy Ones  (2007) [accessed 5 April 2022]

Acknowledgements

Well… 2022 was quite a year! Thank you to my publisher, CRC Press/Taylor & Francis, for taking on this project and also Joanna Koster for being my advocate and guiding hand. Special thanks go to: Prof. Stephen McHanwell, Dr Robert Spence, Prof. Michael Bradshaw, Sarah Davies, Will Guy, Tracy McEwan, Sophie Stewart, Dr Michelle Kidd, Dr Simon Burns, and Roisin Burns. Thank you all for your unwavering support and expertise, which has been invaluable to my putting this work together. Thank you all also for your patience, guidance, and encouragement – and for reading through so many drafts. My friends and colleagues – Eds Chesters, Adam Devlin, Cat Irving, Gerry Kielty, Carus Thompson, Dr Gary Stevenson, Sarah Gobran, Thom Sellwood, Gus Lymburn, Michael Mitchell, Katrina Armitage, Dr Bob Nicholson, Prof. Joann Fletcher, Jake Hallam KC, Sarah Wilson, Victoria Reay, Steven Stewart, Dr Emily Kerr, A.J. West, Sarah Wise, Jan-Andrew Henderson, and Tracy Yarwood (Wezcartoons) – the fantastic artists, comedians, doctors, historians, musicians, teachers, writers, and other such outrageously talented people within these pages – thank you all for so freely sharing your thoughts and perspectives. ‘Great things are done by a series of small things brought together.’ – Vincent Van Gogh A particular thank you goes out to my old friend Rik Ferguson for the coffee machine – without which I would not have survived the year. 

Author

Charlie Guy was born and raised in Leicestershire. Having lived and worked in the North West of England for several years, she now resides happily in Fife, Scotland, with her two dogs, and a cat who would 100% eat her alive if she were smaller. Charlie studied English to Master’s level at Edge Hill University, Lancashire, with special interests in both Gothic and Romantic literature, as well as cultural history surrounding nineteenth-century death and funerary practices, superstitions, and the history of the cadaver. Her great literary loves are Edgar Allan Poe, and his forerunner, John Keats. Charlie has written several articles about the history of monumental architecture, and the role of the gravestone in continued communication with the dead. Having successfully established these academic interests, she then threw a curveball and crossed disciplines, going on to study Human Anatomy, also to Master’s level, at the University of Edinburgh – all while maintaining a varied career within the NHS. Her passion for both the arts and the sciences – and the ways in which they can work together to improve patient care and experience – is what inspired   this work.



Chapter 1

Introduction

As human beings, our ability to communicate is unique. Whereas our distant ancestor, Lucy (Australopithecus afarensis), is commonly thought to have had limited speech and language ability, not dissimilar to that of the modern-day chimpanzee,1 over millions of years of evolution we as a species have branched away from the rest of the animal kingdom. We can now compose sentences to convey complex ideas, using a vast lexicon; we can express thoughts, concepts, and emotions; we recognise the past, and discuss and contemplate the future; we tell stories, and we understand our own mortality. Communication is a key feature of our evolutionary history, and a fundamental cornerstone in our society. It is through our ability to communicate that we have become the dominant species on Earth. Communication builds communities and cultures, and bridges continents – and yet it is frequently taken for granted. Just because we all have the ability to communicate, does not mean that we are all born communicators. Good communication is a skill set which needs to be developed – through practice, experience, and reflection – and without ongoing attention to our communicative practice we can often fall at simple hurdles. We can consider communication to be like an iceberg: the interactions we have constitute only 10% of what is being expressed, and the other 90% lies below the waterline. While we might see one emotion or idea being expressed, this will be born from feelings and emotions we cannot always see. In teaching ourselves the ability to see below the waterline, we allow ourselves far greater insight into the emotions and motivations of the people we are interacting with. So, how does one see beneath the surface? Take, for example, a scenario in which an individual at a clinic reacts angrily. While anger is an unpleasant emotion to deal with, before reacting it is important that we DOI: 10.1201/9781003292067-1

2   The Art of Medical Communication

ask ourselves what lies behind the response. How long has this person been waiting to see you? Has this wait been necessary? If so – do they understand why? Is their anger an expression of internal feelings, such as confusion, anxiety, or perhaps even physical pain? (See Figure 1.1.) Surface Expression

Anger

Fear Anxiety Tiredness Embarrassment Hunger Loneliness Distrust Frustration Lack of Control Confusion Insecurity Shame Injustice Helplessness Feeling Threatened Overwhelmed Guilt Worry

Underlying Factors FIGURE 1.1  Communication Iceberg

Your ability to assess and identify the hidden 90% will directly impact your ability to resolve the situation in a way which is satisfactory to both yourself and the individual you’re speaking to, and engagement with the arts and humanities can greatly assist you in being able to view a situation from an alternative perspective. And this viewpoint works both ways. If you find yourself struggling to interact – ask yourself why. Are you hungry, tired – in need of a break, or a chat with a colleague? Healthcare is a demanding occupation, and in taking the time to recognise and listen to your own wants and needs you will be better able not only to look after yourself, but also maintain good relationships and rapport. Poor communication is endemic across all sectors of the healthcare industry – in hospitals, dentists, care home facilities, and myriad others. Across the NHS specifically, it is a sad fact that the largest proportion of complaints received to date are regarding communication 2 and, when thinking about scientific fields generally, the Department for Business, Energy, and Industrial Strategy (BEIS) report, Public Attitudes to Science (2019), found that poor communication plays a large role in decreasing trends of confidence and understanding among the general public. In fact, 83% of those surveyed by the BEIS said they felt that science requires greater communication to the general public, and 66% expressed a desire to see scientists talk more about the social and ethical implications of their research. Almost half (49%) of those surveyed felt that scientists put too little effort into informing the general public, and 38% saw scientists as being poor communicators.3

Introduction   

3

This apparently ingrained culture of poor communication can, in medical fields, easily spill over from training into practice. While stereotypes (often unfair) exist for every medical specialism, surgery can be used here as a good example. While, obviously, the majority of established surgeons are skilled both technically and interpersonally, a 2015/2017 report in The Pacific Standard nevertheless posed the question, ‘why are so many surgeons assholes?’ and stated that, at that time, ‘a Google search for “why are surgeons assholes” … spits back over 80,000 results, only a few of which are listings for proctologists.’4 While the article went on to discuss potential causes for this stereotypical attitude, (for instance, the demanding nature of a surgical career, and the competitive nature of surgical training – both of which can foster a culture of dictatorial communication), it also made the following, thought-provoking point: Surgeons who are bad communicators [are] often deemed ‘successful’ by the health industry, regardless of their ability to communicate with patients. There is, in other words, no incentive to be nice. 5 But, of course, there is incentive to be nice. A successful practitioner is not merely someone who ‘gets the job done.’ Improving our communicative practice is a good step toward not only mitigating future complaints, but more importantly toward improving patient care and experience – which is of benefit to both patient and practitioner alike. If you can perfectly explain the potential risks and benefits of a procedure, but the patient hasn’t understood anything you’ve said past the word ‘hello’ – how perfect really is your explanation? Nobody goes into healthcare to do a bad job. The worst experience I’ve ever had was supposed to be a straightforward paraumbilical hernia repair. I honestly can’t remember why, because it has to be nearly 25 years ago, but they decided not to go full GA and that is where the problem was, I think. Something went wrong with the anaesthetic, and I could feel the surgeon cut through my abdomen. When I told him, he carried on, telling me it was better for me to have a bit of pain than to bleed to death. – Anon There are a wide range of considerations to take into account when we think about what constitutes good communication. For example, when explaining a dementia diagnosis, how does one communicate with someone whose concept of time and reality may be variable? More broadly – in any interaction – what kind of language is appropriate to enable understanding? How should one handle agitation, or repeated questioning? How well is this person able to understand the conversation? What might make things harder for them? And does the effectiveness of your communication potentially affect their ability to provide informed consent? At the other end of the scale, how does one come across as understandable, but not patronising? Then, of course, all of these considerations are altered as we take into account the communicative mode – and let’s not forget the balancing act that is professional distancing, which should not come at the cost of either your own or the patient’s humanity.

4   The Art of Medical Communication

If you feel daunted, rest assured you’re not alone. A scientific education teaches you to speak scientifically, but knowledge is not the only string to the bow of a good practitioner. Here’s a particularly fun illustration: Aswin Chari, neurosurgery trainee, was inspired by a Mitchell & Webb comedy sketch to consider the following: the idioms ‘it’s not rocket science’ and ‘it’s not brain surgery’ (meaning that something isn’t difficult to understand) are interchangeable – but is one profession more intelligent than the other? A study was performed, in association with the BrainBook neurosurgery charity, in order to settle the debate once and for all.6 And the results? There is very little intellectual difference between either rocket scientists or brain surgeons, in comparison with either each other, or the general population.7 Your job as a practitioner does, undoubtedly, hinge on your knowledge. But as professionals we are frequently placed on unnecessary pedestals – and it is our job to climb down. An effective student understands the answers – an effective practitioner understands how to articulate them appropriately to someone else. This is where the practitioner–patient relationship comes into its own. If we think of this as a contract, then both parties agree to certain terms. For instance, you, as the practitioner, agree to such conditions as respecting individuality, maintaining confidence, providing explanation, and ensuring the highest standards of care. The patient, in return, agrees to behave appropriately, and attend scheduled appointments, etc. But this contract is not all-encompassing. Every patient is an individual who should be viewed holistically. Your patients will hold you, as their practitioner, in a position of trust, and as such will frequently confide intimate, often extremely personal thoughts, feelings, and fears to you. In establishing a level of confidentiality, and understanding, you are better able to provide individuals with a safe space in which to make themselves heard – which could, and should, be included in the composition of excellent patient care and experience. To that end, one of the most important elements of good communication is the ability to listen. To keep things simple, we can loosely apply Skinner’s concept of Radical Behaviourism to this relationship, in so far as how practitioner–patient interactions can affect ongoing trust in, and engagement with, future healthcare conversations and decisions. Essentially, every action has a consequence, the results of which in turn directly affect future actions8 (see Figure 1.2). For example, the patient who expresses concerns or fears regarding a treatment option, if met with reassurance and appropriate explanation, may find themselves with more confidence in both their practitioner and their own understanding. As a result, this individual may be more likely to engage with subsequent treatment decisions and feel comfortable enough to express similar concerns in the future. But the patient who feels their concerns are considered inconsequential may be less

Introduction   

5

Action

Result

Consequence

FIGURE 1.2  Skinner’s Concept of Radical Behaviourism

confident, and therefore less inclined to engage in the future – which could have a detrimental impact on their overall health and wellbeing. In order to increase positive interactions, good communication therefore moves beyond merely having an awareness of empathy, and into a realm of heightened insight, interpretation, and understanding – all things which can be directly improved by engagement in the humanities. a. ESTABLISHING RAPPORT – PEOPLE ARE SOCIAL ANIMALS We rely on each other to not only survive but also thrive. The need for social interaction is so strong within us that we have even developed ways in which to have constant communication – technology such as the Internet and mobile phones providing us with instantaneous connection, 24 hours a day. While this in itself can be problematic – as there is value and benefit to be found in time alone – too much time alone, particularly involuntarily, spent without social interaction can mean our mental health suffers exponentially. Take, for example, the effects of loneliness. There is a difference between being alone and feeling lonely. Being alone can encompass time spent engaging in favourite hobbies, rest and relaxation, and giving thought to processing and reflecting upon one’s life and experiences. Feeling lonely, however, can overwhelm someone even in the middle of a crowded room. Someone who feels lonely may also feel unloved and unwanted; they may feel worthless, anxious, hopeless, and rejected by those around them. An individual who is lonely may not perform adequate self-care purely because they do not feel worthy of it, which in turn limits their social interaction, and so the cycle continues. It is not

6   The Art of Medical Communication

surprising, therefore, that the National Institute for Health Research reports that loneliness increases the risk of depression, with one in five older adults who report experiencing loneliness having a diagnostic attribution of depression within the following year.9 Because our social needs are so deeply ingrained, our interactions need to satisfy unconscious standards; parroting information to someone will not scratch a deepseated evolutional itch, because good communication is a two-way street. As has already been stated – to be a good communicator, as well as being able to make yourself clear and understood, you must also aim to listen and understand. This will likely not be news to you, as it is something which is stated constantly. But what does it really mean? It is helpful, here, to look at Glasser’s Choice Theory, which is particularly helpful as it posits that it is through the development of positive relationships that we can most effectively achieve happiness. Glasser’s Choice Theory asserts that, throughout our lives, we are motivated by the desire to increase pleasure and decrease pain, and that we have five genetically encoded needs: 1. Survival 2. Love and belonging 3. Power 4. Freedom 5. Fun Any interaction that satisfies one of these needs is therefore pleasurable, and any that fails to do so is a source of pain.10 Establishing rapport is the easiest way to ensure these needs are met, as in doing so you ensure the individual you are speaking to feels relaxed and comfortable engaging with you. It also means that they are more open to accepting advice or suggestion, which is often the end goal of a health-related conversation. A smoker, for example, may be more likely to accept a referral to a smoking cessation service if they feel their practitioner is as invested in their health and wellbeing as they are. Let us consider these needs in relation to a patient, Victor, who is attending his GP practice for a consultation: Victor is feeling anxious because his need for survival is compromised by his illness. Just by discussing his health concerns with his doctor, he is able to satisfy this need,

Introduction   

7

because seeking – and receiving – help when we feel as though we are struggling can make us feel good. It is therefore important that this is as positive an interaction as possible. To this end, Victor needs to feel that he is welcome in the consulting room, and this will also satisfy his need for love and belonging. By providing a space in which Victor feels he can discuss his concerns and be taken seriously, without feeling like he is a burden, he will feel an appropriate sense of belonging and control within the conversation. This will directly impact Victor’s sense of power. Feeling listened to will increase Victor’s sense of self-worth, which will in turn make him feel more in control of his health and wellbeing, and this will go some way to alleviating the underlying sense of anxiety that he already carries with him. The act, by Victor’s doctor, of listening to his concerns, and then talking him through the treatment options available, taking the time to discuss and answer any questions he might have, leads to Victor feeling informed about his treatment. This promotes his sense of freedom, as he feels autonomous, and involved in not only the conversation but also his own future. During their conversation, by taking a sustained interest in Victor’s life, Victor’s doctor can help to satisfy his need for fun. By taking an interest in his usual activities and enjoyments, Victor’s doctor reminds Victor that his life consists of more than just his current health concerns. This interaction has been pleasant for Victor, and he therefore leaves feeling reassured, informed, and valued as an individual. Let us now assume that this interaction occurred without the establishment of rapport: Victor was called into the consulting room, but his doctor did not stand to greet him. Victor was given time to discuss his concerns, but his doctor did not look at him while he was speaking, and conversation was limited to closed (yes/no) questions. He was then written a prescription, without explanation, and told to book a further appointment with the receptionist on his way out. While the practitioner in this scenario may have dealt with Victor’s immediate health concerns, they have not appropriately included him in the conversation, which has impacted his senses of love and belonging, power, and freedom. Victor’s underlying anxiety therefore remains, and he does not have confidence in the treatment option he has been given. Victor feels like a number, rather than an autonomous individual, and so his sense of fun is impacted as he does not feel valued. This interaction has been unpleasant for Victor, and he may be reluctant to seek help again in the future as he feels burdensome, which could impact his need for survival. A report in the BMC (BioMed Central) Journal of Medical Education (2017) found that new patients are

8   The Art of Medical Communication

particularly vulnerable in this regard, as they are at higher risk of missing subsequent appointments or dropping out of care completely.11

USING BODY LANGUAGE TO BUILD RAPPORT

It has long been understood that good communication is composed of more than words. In fact, in 1973, Philip Lewis of Oklahoma State University determined that only 7% of our communication is made up of the words we speak. Another 38% comes from the tone and inflection with which we use those words, and the final 55% can be found in our facial expressions, body language, and gestures.12 Everyone behaves and reacts differently in conversation, and so there are no set rules for either reading or speaking body language. As a good rule of thumb, though, open body language – which conveys a willingness to engage in conversation – includes eye contact, an open posture, and positive head gestures, such as nodding.

b. WHEN RAPPORT BREAKS DOWN There are, of course, barriers to the building of rapport – a significant example being found in practitioner time constraints. While longer appointments are associated with greater attention to psychosocial problems, lower prescribing and referral rates, reduction in multiple appointments, and greater levels of patient satisfaction,13 the British Medical Journal (BMJ) stated in 2019 that the average length of a GP appointment was 9.2 minutes,14 and while the patient interview is a key tool in the diagnostic process, a study performed by Ospina et al. in 2019 found that over 60% of the clinicians observed interrupted their patients after a median of 11 seconds.15

OUT OF 200 NHS GENERAL PRACTITIONERS SURVEYED IN 2019:

•

188 (94%) reported the belief that short appointment times put patients at risk.

•

160 (80%) said they felt they did not always have time to properly diagnose patients.

•

110 (55%) feared missing serious health issues.

•

74 (37%) believed that short appointment times had led to them prescribing the wrong course of treatment for their patients.

189 (94.5%) of the general practitioners surveyed said they felt stressed or anxious about appointment times.16

Introduction   

9

With patient-centred care being a paramount consideration, it can feel overwhelming to be expected to successfully diagnose, treat, and refer to onward services (etc.) within a matter of minutes; but the foundations of rapport can take only fractions of a second. A series of experiments performed by Janine Willis and Alexander Todorov in 2006 determined that it can take only a tenth of a second to form a first impression of someone based on their facial appearance, and for all judgements formed (attractiveness, likeability, trustworthiness, competence, and aggressiveness) increased exposure time did not significantly alter these judgements in a positive way.17 Keeping an open posture, smiling, and making eye contact are therefore all good ways in which to set a professional relationship off on a good footing. Of course, there are times when a rapport breaks down and, particularly in times of high emotion, it might not even be possible to build a good rapport in the first place. But a broken rapport is not, by default, always lost. By successfully communicating your understanding of an individual’s needs, you will find that it is often possible to level the foundations and start the build again. The primary lesson for you to take away from a broken rapport should be that there are valuable insights to be learned from each interaction, be they positive or negative, and – despite the overwhelming urge you may experience to do a good job – it is only human to make mistakes. Just because one interaction doesn’t go smoothly does not mean that future conversations will follow the same lead. Every interaction – good or bad – should be viewed as a reflective learning experience – what happened, what was the result, and what will you do differently next time? In an age of instant communication, it can be argued that we have, ironically, forgotten just how vital communication is to us as a species. As a result, while we have improved the ways in which we can communicate exponentially, we have failed to utilise reflection, and therefore have neglected to improve the quality of our conversation: what we say, how we say it, and how we receive what others say to us.18 Active listening is a major contributor to successful communication – particularly in instances where rapport is fractured, and is a method which actively affects how we receive information from other people. Skills of active listening include the asking of open-ended questions, which allow the speaker to take the lead in the conversation, and add to their sense of self-worth, directly building trust. At the same time, paraphrasing, rewording, and clarifying information can assist you in keeping control of interactions, as well as assisting your comprehension, and also demonstrating that you have taken information on board and are making efforts to understand it.

10   The Art of Medical Communication

1

Technique Open-Ended Questioning

Active Listening Checklist Example I understand you’re not happy with the outcome of your last appointment – could you tell me more about this?

2

Acknowledge and I see. You felt rushed, and you’ve got side effects you’d like to Paraphrase address.

3

Seek Clarification Could you give me more detail? What side effects are you experiencing?

4

Define Expectations

What would make you feel more comfortable about this situation? What would you like to happen next?

5

Summarise and Explain

Ok, so you’d like to try an alternative therapy. While these treatment options can be beneficial, and that’s certainly a route we could explore, we need to look at other options first, and this is why.

It is also important to be mindful that you cannot control an individual’s expectations because expectations are subjective. Someone who arrives at a clinic expecting a specific treatment outcome, for example, might become frustrated when informed that a referral to another service is more appropriate. But, by providing appropriate explanations, you provide people with the tools to manage their own expectations and, by demonstrating active listening skills, it is possible to dampen frustration, and enable better understanding. With this in mind, it is also important to be aware of the idea that one cannot successfully communicate with someone whose main aim is to misunderstand you. An individual may be frustrated at a situation, for instance, and view your interaction not as a source of resolution but rather as an outlet for that frustration. In these circumstances, knowing when to bring a conversation to a close can be beneficial, giving all parties involved a chance to reflect upon the interaction, and mitigate ongoing tensions.

c. THE ROLE OF THE HUMANITIES WITHIN PROFESSIONAL DISTANCING The psychology of how we view both health and illness is fascinating. According to many correlational studies, experiencing the suffering of others can result not only in the experiencing of negative emotions, but also more negative evaluations of our own health and wellness, and an overestimation of our own vulnerability. It has been shown that the ways we perceive our own wellbeing, or at least some aspects of it, are feasibly connected to the perception of the wellbeing of others.19 With this in mind, it is a common coping mechanism to consider ourselves as separate from the suffering we experience, and when we recognise this within ourselves it is

Introduction   

11

important that we keep ourselves grounded, and do not widen this separation too far. Wellness and illness, to vast extents, are luck of the draw. Dr Gary Stevenson is a consultant psychiatrist, who qualified from Glasgow University in Medicine in 1990. Working initially in Glasgow Royal Infirmary, he then took up a role in New Zealand for a year, before starting a psychiatric training rotation in Fife in 1992: At medical school, I had not been overly impressed by psychiatry as a topic (it seemed a bit bland, and not in any way dynamic or particularly relevant to me) but I had become interested in the speciality whilst in New Zealand and thought I’d give it a try. On the first day of my psychiatric training post in Fife, I was met by the Psychiatric Registrar who told me there had been an admission overnight and she was on her way to review him. He was a 27-year-old man who had been stopped by Police while driving in Fife. The police were concerned about his mental health, and had brought him to A&E, where he had been assessed and admitted informally to the psychiatric admission ward. Feeling nervous, and completely unprepared for this new speciality, I entered the room with the registrar, and stood to her side as requested. The room was dimly lit, with the patient sitting in front of the window, making it difficult initially to see his face. His first words were ‘Hi Gary – how are you doing?’ I was stunned. The patient was a previous close school friend of mine, although we had had no contact for several years. He had been working in the oil industry in Aberdeen and was travelling back to Glasgow, but en route had become mentally unwell with a first episode of psychosis. It was a revelation to me that one of my previous close friends had developed a mental disorder – surely that only happened to ‘other’ people. It was a reality check. That introduction in my early days of psychiatric training to the uncertainty and the unpredictability of mental health presentations altered my opinions; psychiatry was no longer bland but a dynamic and relevant speciality, worthy of earnest engagement, from which I retired 30-plus years later. Medicine, nursing, and other healthcare-related specialisms are demanding careers. Not only do practitioners have the pressures of knowledge and responsibility, but there are also the considerations of their own mental health and wellbeing. When dealing with distressing or emotionally draining scenarios on a daily basis – such as breaking bad news, death and end-of-life care, or suffering individuals – while having to maintain a professional standard across each interaction, professional distancing can be considered the way in which the practitioner balances empathy with selfpreservation. While this is often referred to as professional detachment, the aim is

12   The Art of Medical Communication

not to detach oneself from a situation entirely. Patients want, and respond better to, empathetic, compassionate care, 20 and while the ability to distance yourself from your own emotions may assist you in the formation of the best clinical judgements, it may not be helpful in terms of patient care and experience. I was going through my second miscarriage, and I was still bleeding heavily. I called my GP practice to have my sick line for work extended and, as my usual GP was on holiday, I had to speak to the one covering. She took a lot of persuading to give me another week off work, and asked me ‘What do you want to do? Sit at home and cry all day?’ – which, yes, at that time was exactly what I wanted to do. – Anon While it is often described as a balancing act, it is preferable to think of this process as being a sliding scale. Your response to a situation may require different things from you at different times, and what is appropriate for dealing with one scenario may be inappropriate for dealing with another. Allowing for some movement in either direction is therefore beneficial (see Figure 1.3). Emotional Response

Professional Distance

FIGURE 1.3  Scale of Distance

While utilising professional distancing, your skills of empathy will play a major role in how effective your communication is. Roger Neighbour, past president of the Royal College of General Practitioners, noted that: While there are some clinical situations where hard-nosed clinical skill is all that is required … [in others] the very best we can offer is our ability to understand and to empathise … the professional skill, if there is one, is to be in control … [of our detachment and] able to engage or disengage our empathy according to clinical circumstances. 21 To this end, a good metaphor to encompass our working life is to think of ourselves as actors playing roles. The goal of a trained actor is to portray a believable character. The actor has the ability to turn their level of emotion up or down, depending on not only the type of audience they are presented with as the curtain rises, but also how this audience responds, and a good actor will draw on their own personal life experiences to find parallels between themselves and the response expected from their audience. In fact, many actors will struggle to portray a role if they have not lived

Introduction   

13

the experience of their characters, and this can be best illustrated by thinking about the method acting process. Method acting is the process of putting yourself directly into the life of the character you are trying to portray. This method is favoured by many actors because it enables them to think like the characters they are trying to represent, and therefore deliver a more realistic and trustworthy performance. Lady Gaga, for example, kept an Italian accent throughout the entire filming period of House of Gucci (2021), even when not filming or on set; Heath Ledger put himself through a gruelling regime of sleep-deprivation for The Dark Knight (2008) in order to portray a character on the edge of psychosis; and Alan Rickman stayed in the character of seriously misunderstood potions-master Severus Snape in the Harry Potter film series (2001–2011) to the extent that his young castmates were said to have been frightened of bumping into him on set. Engagement with the arts and humanities can play a powerful role in enabling you to achieve far greater insight into the emotional needs of the people you are speaking to, by providing insights which can put you into the shoes of people who may live vastly different lives and experiences. The Center for Building a Culture of Empathy, 22 founded by Edwin Rutsch, describes the types of empathy utilised within the artmaking process as being like four spokes on a wheel (see Figure 1.4). 1. Self-empathy, or the ability to recognise your own emotions 2. Mirrored empathy, the act of recognising and assuming someone else’s emotions 3. Imaginative empathy, allowing you to put yourself into someone else’s emotional experience 4. Empathic action, the ability to contribute to the emotional wellbeing of others

Self empathy

Mirrored empathy

FIGURE 1.4  Wheel of Empathy

Empathetic Action

Imaginative empathy

14   The Art of Medical Communication

By enabling us to look creatively at a situation, the humanities develop our skills of critical thinking and, perhaps most importantly, they teach us empathy. Sarah Gobran, co-founder and producer of the Guildford Shakespeare Company, believes storytelling to be part of the very essence of what makes us human: The sharing of experiences, escapism through another person’s words, movements, images, sounds. Imagine a world without books, theatre, Netflix, radio, film, music, Line of Duty, Fleetwood Mac, the smiley face emoji … it’s unthinkable. All of these subjects underpin our daily life; they are what make communication, listening, presentation, sharing, empathy and community, all possible. They are not soft subjects; they are part of life’s essentials. And this is exactly how the humanities should be considered – as part of life’s essentials. This is certainly what they showcase to us, in myriad ways. Game of Thrones author George R. R. Martin famously wrote that ‘a reader lives a thousand lives before he dies. A man who never reads lives only one’23 – and this is very true. By being able to place yourself into someone else’s experience, you are better able to gauge the levels of emotion and distance required for a given interaction, and successfully position yourself at the correct level on the scale. d. MODELS OF COMMUNICATION Communication comes in many forms. You must be able to interpret the experiences of your patients, with an aim to successfully setting and building towards goals based upon the foundations of shared meaning. It is important you are able to understand and evaluate the communicative options available to your patients, in order that you can determine which method(s) are the most suitable/accessible for them. Giving a complex information booklet to someone with cognitive impairment is not going to be conducive to their understanding of their health and wellness, for instance. There are three models of communication which shall be outlined here, those being linear communication, interactional communication, and transactional communication. While they all have their places within the narrative of healthcare communication, the message you should take away is that the optimum form of communication is often a combination of all three methods – consisting, essentially, of the formation of a contract between yourself and your patient, as well as providing relevant information/sources with which to support and inform this contract. i. Linear Communication Linear communication is a one-way method of communication. It is a closed dialogue, in which a message is sent without the expectation of feedback from the individual/individuals it is aimed at.

Introduction   

15

This type of communication can include (but is not limited to) documents intended to inform – such as information leaflets, webpages, and public health announcements. The advantages of linear communication include its ability to facilitate the distribution of information to a large number of individuals quickly, easily, and comprehensively, as well as being able to signpost individuals requiring further support to other services. The drawbacks of linear communication include the closed nature of the dialogue. Individuals who may not fully understand the information they are provided with, or who may have additional support needs to enable them to access it, may not be catered for and the information therefore may not be successfully imparted. Furthermore, linear communication does not allow for questioning, which can allow for misinterpreted information to be instead held as a firm belief, which can affect future care options and decisions. When utilised incorrectly in a clinical environment, the provision of linear communication alone can lead to patients feeling undervalued, and damage rapport.

For example: A morbidly obese patient attends a GP appointment, frustrated that they are not losing weight despite ‘being on a diet.’ From further discussion, you are able to determine that while main meal choices are balanced and healthy, the patient is compensating for smaller portion sizes with increased snacking. Furthermore, they are drinking a high protein shake every morning which they do not find palatable, and so are supplementing it with a large quantity of sugar. You as the practitioner are able to:

1. Provide them with an information leaflet explaining more about what constitutes a healthy diet and exercise regimen (linear communication). Patient Outcome: Despite being able to access further information about a healthy balanced diet, the patient feels that this is information they could have found themselves. The outcome of the appointment therefore does not align with the patient’s expectations of why they wished to speak with their practitioner. They leave feeling frustrated, not listened to, and remain uninformed about simple lifestyle alterations. They may be disinclined to seek medical advice in future or may disengage from a healthy diet plan as they feel it is ineffectual and a waste of time.

16   The Art of Medical Communication

ii. Interactional Communication Interactional communication is slightly more complex. It is a form of communication which consists of two technology-enabled participants constructing a simple dialogue, and yet still without the ability for a full discourse. Examples of interactional communication within a healthcare setting include (but are not limited to) online symptom checkers, forms (online appointment forms, repeat prescription forms, etc.), BMI calculators, and interactive graphics. Advantages of interactional communication include the ability to provide comprehensive, reliable, and meaningful information about symptoms/emotions/ quality of life data from more targeted, specific patient subsets, as well as being able to signpost patients requiring further input and support to available services where appropriate. The drawbacks of interactional communication again consist of its closed nature. A patient who does not understand a question, or who is trying to pre-empt the outcome of the exercise, may therefore either deliberately or inadvertently answer incorrectly, skewing the data collected. Furthermore, patients may be unable to access these systems for a variety of reasons, including (but not limited to) cognitive ability, and social/economic circumstances.

For example: A morbidly obese patient attends a GP appointment, frustrated that they are not losing weight despite ‘being on a diet.’ From further discussion, you are able to determine that while main meal choices are balanced and healthy, the patient is compensating for smaller portion sizes with increased snacking. Furthermore, they are drinking a high protein shake every morning which they do not find palatable, and so are supplementing it with a large quantity of sugar. You as the practitioner are able to:

1. Signpost them to relevant online services, such as the NHS BMI calculator (which provides a simplistic overview of recommended calorie intake), and interactive resources around healthy meal preparation, and nutritional requirements (interactional communication). Patient Outcome: The patient is happy with the information about meal preparation but remains frustrated at not understanding why their weight has remained stable despite their efforts. The patient feels they could have found much of this information themselves,

Introduction   

17

and the emphasis on BMI feels frustrating as they are not seeing the desired results. The outcome of the appointment therefore does not align with the patient’s expectations of why they wished to speak with their practitioner. They leave feeling frustrated and remain largely uninformed about simple lifestyle alterations. There is potential for them to disengage from a healthy eating regime, and they may be reluctant to ask for advice in the future.

iii. Transactional Communication Examples of transactional communication include (but are not limited to) telephone calls, face-to-face consultations, virtual meetings, and group sessions. The major advantage of transactional communication is that it allows all participants to pose and respond to questions and other factors which may influence communicative intent; for example, body language, special requirements, and deeper/more tailored explanation. The purpose of transactional communication can be viewed as being to negotiate a contract between participants. This is particularly helpful in a healthcare setting as it can help define expectations between patient and practitioner, establish individual roles and responsibilities, and allow for a more person-centred approach to healthcare provision.

For example: A morbidly obese patient attends a GP appointment, frustrated that they are not losing weight despite ‘being on a diet.’ From further discussion, you are able to determine that while main meal choices are balanced and healthy, the patient is compensating for smaller portion sizes with increased snacking. Furthermore, they are drinking a high protein shake every morning which they do not find palatable, and so are supplementing it with a large quantity of sugar. You as the practitioner are able to:

1. Discuss with them both the positive changes they have made, and the misconceptions they are currently operating under. This consultation allows them to ask questions and clarify the information they are being given (transactional communication). 2. Set realistic targets and organise follow-up appointments for additional support if needed (transactional communication).

18   The Art of Medical Communication

Patient Outcome: The patient now understands that they have been inadvertently consuming more calories than they realised. The outcome of the appointment aligns with the patient’s expectations of why they wished to speak with their practitioner, but they have not been provided with information around healthy meal preparation and recommended daily nutritional intake. They leave feeling informed as to some simple lifestyle alterations, but without the information required to put these changes into best practice. There is potential for them to continue making similar mistakes, and so disengage from a healthy eating regime as they feel it ineffectual.

iv. Combination Approach These modes of communication do not need to be used in isolation. The transactional model of communication can, for example, incorporate both linear and interactional communicative models within it and, indeed, when these three communicative models are used in tandem a much more comprehensive picture is able to be presented both from and to the people under your care. By combining all three models of communication wherever possible, we are able to guide individuals toward much more informed, better supported outcomes. There are, of course, circumstances which do not allow for all forms of communication to be utilised, but where multiple resources are available their provision can enable patients to access information in a broad variety of ways, leading to them feeling far more empowered, in control, and knowledgeable about decisions regarding their own health.

For example: A morbidly obese patient attends a GP appointment, frustrated that they are not losing weight despite ‘being on a diet.’ From further discussion, you are able to determine that while main meal choices are balanced and healthy, the patient is compensating for smaller portion sizes with increased snacking. Furthermore, they are drinking a high protein shake every morning which they do not find palatable, and so are supplementing it with a gross quantity of sugar. You as the practitioner are able to:

1. Discuss with them both the positive changes they have made, and the misconceptions they are currently operating under. This consultation allows

Introduction   

19

them to ask questions and clarify the information they are being given (transactional communication). 2. Set realistic targets and organise follow-up appointments for additional support if needed (transactional communication). 3. Signpost them to relevant online services, such as the NHS BMI calculator (which provides a simplistic overview of recommended calorie intake), and interactive resources around healthy meal preparation, and nutritional requirements (interactional communication). 4. Provide them with an information leaflet explaining more about what constitutes a healthy diet and exercise regimen (linear communication). Patient Outcome: The patient now understands that they have been inadvertently consuming more calories than they realised. The outcome of the appointment aligns with the patient’s expectations of why they wished to speak with their practitioner. They have also been provided with information around healthy meal preparation and recommended daily nutritional intake, which they can use to research and reinforce the information given to them at clinic. They leave feeling informed as to some simple lifestyle alterations and have a means of accessing further information required to put these changes into best practice. They may be further inclined to seek advice should they find themselves struggling in the future, and this has the potential to lead to a much better long-term health outcome for them.

e. MODES OF COMMUNICATION i. The Spoken Word The spoken word is powerful. Speaking to someone directly conveys not only information but also emotion – the use of tone, inflection, and word choice all having a profound effect upon the information both imparted and received. The words we put into sentences are like the ingredients in a cake: adding salt instead of sugar is an easy mistake to make – but something that will have a profound effect upon the end result. Take, for example, the following expression of sympathy: ‘I know how you feel.’ While generally well intentioned, the above statement acts as what sociologist Charles Derber describes as unconscious conversational narcissism – flipping the focus of the discussion back onto you as the speaker. 24 As a practitioner trying to impart information within a strict appointment time, this is an easy mistake to make – after all, you need the person you are speaking with to pay attention to you.

20   The Art of Medical Communication

But, while you are certainly an important part of the conversation, it is essential to recognise that you are not the focus. While you as a practitioner may have similar conversations on a daily basis, it is important to remember that the patient, relative, or friend sitting in front of you does not. What is a routine conversation for you, may be life-changing to someone else. We all face situations differently, and in telling someone you ‘know how they feel’ you inadvertently tell them that their situation is not ‘special.’ This can pose considerable barriers to ongoing conversation as it provokes a self-protective response, often resulting not in active participation, but rather defensive listening. A position of defence can mean that the individual fails to focus sufficiently upon the information being imparted – or fails to appreciate the message being given. Indeed, as an individual becomes more defensive, they become less and less able to accurately observe the motives, values, and emotions of the person they are speaking with, 25 and so will disengage themselves entirely from the conversation. So, instead of ‘I know how you feel,’ perhaps ‘I sympathise,’ or ‘I hear what you are saying’ would be more appropriate – expressions which convey sympathy whilst at the same time do not remove or transfer ownership of the situation at hand. By becoming more self-aware, and carefully considering our word choice, we can mitigate the closing of conversations, and open the floor for more comprehensive, supportive discussion. ii. Telephone Communication Of course, you may not always be speaking to someone in person. Conversations which take place over the telephone have significant differences to those taking place face-to-face, predominantly in that, by telephone, it is impossible to utilise nonverbal communication – or body language. It has been found that GPs do not substantially change their communicative behaviour on the telephone, and that, typically, telephone consultations will be more focused, or mono-topical. 26 This can be attributed to the immediate nature of a telephone call, and also the rapidity in which the conversation begins; however, it is important to recognise that in the absence of non-verbal cues, feedback is essential. A valuable tool in both face-to-face and telephone interactions is the Three Second Rule – allowing someone three seconds of silence from the time they finish speaking, to the time you begin your response. This ensures not only that they have finished whatever it is they have to say – preventing you from speaking over them – but it also allows you to fully absorb the information they have imparted and formulate a measured response. On the other hand, on the telephone it may be harder to make yourself heard. It could be argued that the psychological association of mobile communication with intimate

Introduction   

21

and significant relationships27 means that some individuals may feel more ease of conversation over the telephone, and as such be difficult to interrupt, or may lose focus on the topic at hand. Interruption, when it disrupts the flow of what someone is trying to communicate, can be seen as rude; however, interruption is merely a type of distraction. Phrases such as ‘let’s go back to your previous statement,’ or ‘while that’s important, let’s think about …’ are helpful ways to ensure conversation remains focused, and under your control. As useful as it can be, however, distraction can also pose a significant issue during telephone interactions, and it is important to remember, once again, that feedback is essential. iii. The Written Word The pen is mightier than the sword! Or the tongue, in this instance. Writing letters directly to patients not only puts them at the centre of their care, 28 but also allows them the time to go over the information they need and fully digest it. Psychologist Hermann Ebbinghaus famously performed a series of tests relating to learning and memory and found that within 24 hours of learning something new, we have forgotten two-thirds of the information we received.29 While there are some limitations to Ebbinghaus’s study, as a rule of thumb in clinical conversations it is useful to work to this idea. The benefits of the written word therefore include increased processing time and encouragement of correct recall, as well as being far more personable – a practitioner who takes the time to write to a patient following a consultation may be regarded as more invested in their care, and letter writing has also been promoted by the BMJ as an educational tool for improving medical students’ empathy and skills of rapport.30 All resoundingly positive! But care should be taken when putting words to paper. For starters, is the situation letter-appropriate? When breaking bad news, for example, a letter can appear shocking and detached rather than supportive. Where written correspondence is appropriate, however, further particularly important considerations include such elements as spelling, grammar, and word choice. In 2017, for example, a letter which described a father as ‘manfully’ bringing his daughter to an appointment was widely criticised, and it was broadly reported that the hospital had used inappropriate, sexist language.31 While it can be reasonably assumed that the comment made was – at its core – well intentioned, the consultant concerned was obliged to make a public apology, and this is a good example of where carefully considering word choice is essential. The BMJ acknowledges that many patients can potentially feel patronised by being written about rather than to – particularly on occasions where they are described with adjectives such as ‘pleasant.’32 With this in mind, the following recommendations are made when thinking about writing effectively to patients:

22   The Art of Medical Communication

Consider Tone

Avoid Labelling

Remain Neutral

Avoid Jargon

While you naturally may want to establish a friendly rapport, it is important to recognise that the patient/practitioner relationship requires an element of professional distance to ensure appropriate clinical interactions and decision making. With this in mind, while the opening statements of your letter may require a more informal tone, medical information is often more suited to formal presentation, which better allows patients to process information, and also enables them to question or challenge information they do not feel to be accurate without the pressure of fracturing an over-familiar rapport. It is vital that patients feel they are being treated as an individual, rather than a number. To that end, descriptions such as ‘you have Coeliac disease’ become more appropriate than ‘you are a Coeliac.’ Such language will ensure the recipient of the letter feels like the focus of the correspondence. To this end, while standardised letters can be useful in many circumstances, on other occasions they may feel cold and disconnected, and should therefore be avoided in more case-specific clinical communication. As well as having their individuality respected, patients also have a right to autonomy, and feeling in control of their bodies, and decisions relating to their care and treatment. It is therefore important that individuals do not feel judged or scrutinised personally by their practitioners. ‘You attended clinic in a very agitated and distressed state,’ for example, allows someone a greater opportunity to reflect and engage with service provision than ‘reception staff reported you to be aggressive.’ Do you really need to say ‘cardiac,’ ‘renal,’ or ‘respiratory,’ or can you instead say ‘heart,’ ‘kidney,’ and ‘breathing’? Avoiding the use of jargon will not only make letters easier to comprehend, but also less threatening; however, the background of individuals should be taken into consideration when altering such terminology. A university professor, for example, might feel patronised by being described as having a ‘tummy ache’ rather than ‘abdominal pain,’ but the teenager you saw in A&E might not.

33

A similar linguistic consideration you will face will be that of gender pronoun preference. In recent years, with the increase of awareness of transgender issues, it has become common practice for those of a gender-queer, or non-binary, nature to select non-gender-specific pronouns. Someone who has undergone, or is undergoing, gender reassignment, for example, will likely prefer alternative pronouns to those associated with their gender as assigned at birth. Similarly, an individual may prefer they/them/theirs in the place of he/she, his/hers, etc. Furthermore, there is increasing use of neopronouns – new words which can serve as pronouns – for instance xie/ xim/xirs, or e/em/eirs. Where an individual has expressed a preference for a specific pronoun, it is important to conform to that preference, and respect their individuality, autonomy, and the manner in which they choose to both express and present their gender self-image.

Introduction   

23

iv. Grammar and Punctuation Language always has, and always will, continue to evolve. In the digital age – as predictive text, spellcheck, and digital communication all take precedence over the traditional written word – it can be seen that we often become lazy in our communication. But grammar and punctuation are what gives our written word precision, and their importance shouldn’t be wilfully neglected. Outside of the consideration of word choice, the order of those words, and the punctuation used, can change the meanings of sentences completely.

Let’s eat Michael and not wait for the rest of the group Let’s eat, Michael, and not wait for the rest of the group

A good example of this can be found in the word ‘only,’ which acts as a modifier – that is, it modifies the words around it. By placing a modifier in different positions throughout a sentence, you can create entirely different, yet still grammatically correct, meanings: ‘Sarah told Michael that she wanted beans’ Placement of ‘only’ Meaning of the sentence Only Sarah told Michael that she wanted Nobody else told Michael they wanted beans beans Sarah only told Michael that she wanted Sarah didn’t say anything else to Michael beans Sarah told only Michael that she wanted Sarah didn’t tell anyone else she wanted beans beans Sarah told Michael only that she wanted Sarah told Michael that she wanted beans, beans but she didn’t tell him anything else Sarah told Michael that only she wanted Nobody wanted beans apart from Sarah beans Sarah told Michael that she only wanted Sarah doesn’t want anything more beans substantial than beans Sarah told Michael that she wanted only Sarah doesn’t want anything other than beans beans Sarah told Michael that she wanted Sarah doesn’t want anything other than beans only beans

Of course, this example is meant to be entertaining. But if we put it into the context of a clinical conversation – how many different meanings can you make by doing the same exercise with the following sentence? ‘Sarah should be prescribed 5 mg Diazepam nocte’

24   The Art of Medical Communication

The best way to master the written word is to use it. Due to the way we learn how to read and write – such skills being stored in our semantic, factual memory – much like learning how to ride a bicycle, once we have learned how to read and formulate language our brains do so automatically. Therefore, reading, regardless of the material, helps your frontal lobe – the part of the brain responsible for speech, reading comprehension, and grammar use – flex its metaphorical muscles. Reading for enjoyment, regardless of the material, therefore helps strengthen future language use ability. v. Digital Communication Digital communication is an evolving sphere, and we can see rapid developments in the way technology is being used within a healthcare setting – often with significant changes in working practices taking place within working memory and affecting career paths as practitioners are required to adapt just as quickly. In 1998, for example, publishers Bailliere Tindall Ltd released a text aimed at complementing the role of the medical secretary, entitled The Essential Medical Secretary: Foundations for Good Practice. This work, at the time of its publication, provided a very useful insight into the working life of a medical secretary, covering issues such as patient confidentiality, law, and standard working practices; however, retrospectively it also provides us with fascinating insights as to how increasing developments in technology were being viewed. For instance, the work describes the benefits of ‘enhanced word processing’ (Microsoft Word) as being ‘interesting layouts,’ ‘different type styles’ (fonts), ‘savings in time and money,’ and ‘greater control over the process’34 – things we take completely for granted today, as we absentmindedly fiddle with a text box, or toggle our font choices between Courier and Webdings. Perhaps the most amusing, however, is the description of the benefits of ‘electronic mail’ (email) within a GP practice: One of the doctors can send a message to everyone in the practice saying that one of the practice’s patients has died. 35 One would hope not in the consultation room! It is easy for us to smirk at descriptions of what is now familiar technology in the past. But who knows where technology will take us over the next 30 years? There is little to no doubt that the technology being described in this book will at some stage in the future be viewed as outdated – perhaps one day a description will even be published in someone else’s book as an example. For instance, in 2021, Digital Outpatient Care (DOC) showcased the world’s first holographic telemedicine consultation, with attendees of the event being able to

Introduction   

25

experience a live endoscopy with a nurse on the ground in Dubai, while the ENT specialist in another location who was able to guide and diagnose in real time. The benefits to holographic consultation were listed as many, including the curtailing of unnecessary and often expensive travel, and reduced exposure to the Covid-19 virus, with the DOC press release stating that ‘no longer will a patient’s geographic location determine the immediacy, intimacy, and quality of healthcare.’36 Popular culture is filled with predictions of what the future could be like, and examples of technology taking over the world – and, in many instances (particularly relating to our everyday lives), these predictions were correct. George Orwell’s dystopian novel 1984, for instance, accurately predicted facial recognition technology, speech-to-text software, and the widespread use of CCTV cameras; while television sci-fi classic Star Trek depicted the use of teleconferencing, tablet computers, and USB memory sticks (amongst multiple other things!) – years before their actual creation. We should view our forerunners as pioneers of technology, from whom we merely take the reins, and an anecdote about being respectful of our elders is useful in this instance: don’t laugh at the people who once had to teach you how to use a spoon. In a similar vein, always be nice to your medical secretary. They do more for you than you’d imagine. Technology is having a tremendous impact on the way we interact with each other, and healthcare interactions are not exempt from this societal change. NHS England, for example, has recognised the ongoing transformation of modernday communication, and is as a result now committed to providing ‘digital first’ primary care, with GP practices increasingly offering access to services online. Importantly, under the terms of the GP contract, from 2019–2020 all GP practices should now have an online presence (e.g., in the form of a website), and should offer and promote to their patients access to online consultation tools, as well as video consultations. 37 Video consultation has several benefits; for instance, patients are able to be seen in the comfort of their own homes, which can decrease stress, and promote relaxed interaction (which was noted to be the case even before the Covid-19 pandemic).38 There are further benefits, too, in that it may also be possible to carry out a greater number of consultations, as elements such as travel time and expenses for the practitioner are reduced; however, significant drawbacks to video consultations have been noted. Such drawbacks include issues of accessibility (with some patients potentially running the risk of being ‘digitally excluded’), poor connections, lack of privacy and, more generally, it has been found that patients are concerned about what might be missed during a video consultation in relation to diagnosis – with some patients admitting that they might not accurately describe their symptoms during a video consultation, or even downplay a worrying symptom. Throughout both video and telephone consultation, there is the potential to miss a problem which

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might have been spotted by a clinician in person, but which over a digital connection is hidden – particularly if the issue is not raised by the patient.39 For instance, in October 2021, 27-year-old Callum Jones contacted his GP to discuss breathing difficulty and chest/shoulder pain and was prescribed an inhaler for the treatment of pleurisy; however, while Mr Jones’ GP was aware that he was significantly overweight, during the telephone consultation Mr Jones did not disclose the fact that he had fallen some two weeks previously and sprained his ankle. As such, his practitioner was not aware of the fact that he had been wearing a protective boot, nor the fact that his mobility was limited. As such, the risk of a blood clot was not considered, and four days following the consultation Mr Jones passed away from pulmonary embolism. Following the inquest into his death, Mr Jones’ family stated their belief that his life could have been saved, had he been given a face-to-face consultation.40 This is obviously an extreme, and very sad, stand-alone case. Despite its limitations there are also significant benefits to video communication and, particularly in the post-pandemic age, its utilisation is on the increase, with many routine appointments now being carried out not in a clinic room, but over a computer screen. Digital consultation can be seen to have an important role to play in the future of healthcare practice and, where it is appropriately utilised, factors which can increase the success of video consultation can be deemed Video Call Etiquette. These include such considerations as attending the call on time, keeping your camera switched on, being respectful of an individual’s personal space and time, being dressed appropriately, and making appropriate and sustained eye contact with the camera. Engagement with the humanities can be extremely helpful in improving your skills of digital communication – particularly engagement with drama, and the social sciences. Naturalistic drama and role play can significantly improve awareness of visual cues and alert you as a practitioner to mannerisms and turns of phrase that can indicate anything from avoidance of questioning to state of mind. Similarly, the social sciences – psychology, sociology, etc., – all provide us with an understanding of how people behave and respond, and engagement with linguistics, literature, and the arts can teach us how the dialogue we choose reveals insights to our character. NOTES 1 Fran Dorey, How do we know if they could speak? (2020) [accessed 18 March 2022] 2 National Statistics, Data on written complaints in the NHS – 2019-20 quarter 4 [NS] (2020) [accessed 18 March 2022] 3 Department for Business, Energy & Industry Strategy, Data on written complaints in the NHS – 2019-20 quarter 4 [NS] (2019) [accessed 18 March 2022] 4 Rick Paulas, Why are so many surgeons assholes? (2017) [accessed 18 March 2022] 5 Rick Paulas [accessed 18 March 2022] 6 Chari et al., ‘“It’s not rocket science” and “It’s not brain surgery”—“It’s a walk in the park”: Prospective comparative study’, BMJ, 375.067883 (2021) [accessed 18 March 2022] 7 Chari et al. [accessed 18 March 2022] 8 Various, The psychology book (London: Penguin Random House, 2011), p. 81 9 National Institute for Health Research, Loneliness is strongly linked to depression among older adults, a long-term study suggests (2021) [accessed 18 March 2022] 10 Various, The psychology book, p. 241 11 Bich N. Dang, Robert A. Westbrook, Sarah M. Njue, and Thomas P. Giordano, ‘Building trust and rapport early in the new doctor-patient relationship: A longitudinal qualitative study’, BMC Medical Education, 17 (2017) [accessed 18 March 2022] 12 Phillip V. Lewis, ‘Body language: Non-verbal behavior as a communicative stimulus’, ETC: A Review of General Semantics, 30.3, (1973), 345–247 (p. 246) [accessed 18 March 2022] 13 Thomas R. Konrad, Carol L. Link, Rebecca J. Shackelton, Lisa D. Marceau, Olaf von dem Knesebeck, Johannes Siegrist, Sara Arber, Ann Adams, and John B. McKinlay, ‘It’s about time: Physicians’ perceptions of time constraints in primary care medical practice in three national healthcare systems’, Medical Care, 48.2 (2013), 95–100 [accessed 5 April 2022] 14 Helen Salisbury, ‘Helen Salisbury: The 10 minute appointment’, BMJ, 365.2389 (2019) [accessed 12 April 2022] 15 Naykky Singh Ospina, Kari A. Phillips, Rene Rodriguez-Gutierrez, Ana CastanedaGuarderas, Michael R. Gionfriddo, Megan E. Branda, and Victor M. Montori, ‘Eliciting the patient’s agenda- secondary analysis of recorded clinical encounters’, Journal of General Internal Medicine, 34 (2019), 36–40 [accessed 16 April 2022] 16 Open Access Government, Doctors admit short appointment times are putting patients at risk (2019) [accessed 16 April 2022] 17 Janine Willis, and Alexander Todorov, ‘First impressions: Making up your mind after a 100-ms exposure to a face’, Psychological Science, 17.7 (2006), 592–598 [accessed 16 April 2022] 18 C. Headlee, We need to talk: How to have conversations that matter (Boston: Little, Brown Book Group, 2017), p. 9/10 19 Evangelos C. Karademas, ‘Effects of exposure to the suffering of unknown persons on health-related cognitions, and the role of mood’, Health, 13.5 (2009), 491–504 [accessed 7 December 2022] 20 Beth A. Lown, Julie Rosen, and John Marttila, ‘An agenda for improving compassionate care: A survey shows about half of patients say such care is missing’, Health Affairs, 30.9 (2011) [accessed 16 April 2022] 21 Roger Neighbour, ‘Detachment and empathy’, British Journal of General Practice, 66.460 (2016) [accessed 18 March 2022]

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22 Center for Building a Culture of Empathy (2022) [accessed 18 March 2022] 23 George R. R. Martin, A song of ice and fire (London: Harper Voyager, 2012) 24 Headlee, We need to talk, p. 105 25 Jack R. Gibb, ‘Defensive communication’, ETC: A Review of General Semantics, 22.2 (1965), 221–229 (p. 222) [accessed 18 March 2022] 26 Heather Hewitt, Joseph Gafaranga, and Brian McKinstry, ‘Comparison of face-to-face and telephone consultations in primary care: Qualitative analysis’, British Journal of General Practice, 1.60 (2010) [accessed 18 March 2022] 27 Kathleen M. Cumiskey, ‘Review: Walden three? Reviewed work: Reclaiming conversation: The power of talk in the digital age by Sherry Turkle’, The American Journal of Psychology, 129.4 (2016), 488–493 (p. 489) [accessed 18 March 2022] 28 Rayner et al., ‘Writing outpatient letters to patients’, BMJ, 368 (2020) [accessed 18 March 2022] 29 Various, The psychology book, p. 48/49 30 Rayner et al., ‘Writing outpatient letters to patients’ 31 Chris Baynes, Hospital accused of sexism after praising father for ‘manfully’ bringing daughter for treatment (2017) [accessed 18 March 2022] 32 Rayner et al., ‘Writing outpatient letters to patients’ 33 Rayner et al., ‘Writing outpatient letters to patients’ 34 Phillip Simons, The essential medical secretary: Foundations for good practice, ed. by Stephanie J. Green (London: Bailliere Tindall, 1998), p. 123 35 Simons, The essential medical secretary, p. 116 36 DOC Global, Doctor consult through hologram gives patients a real life and personalized telemedicine experience (2021) [accessed 3 July 2022] 37 NHS England, Digital first primary care (2022) [accessed 18 March 2022] 38 Gemma Hughes, Weighing up the pros and cons - patients’ views and experiences of video consultations (2021) [accessed 18 March 2022] 39 Hughes, Weighing up the pros and cons - patients’ views 40 BBC, Ewloe man, 27, dies after spraining ankle walking dog (2022) [accessed 12 June 2022]

Chapter 2

A Definition of the Humanities

What exactly are the humanities? As a concept, the humanities can often appear disconcertingly vague. Nobody has that problem with ‘science.’ Everyone knows what science means, and what benefit it can have to society. Science encompasses the continual improvements in technology and medicine which have the direct ability to significantly improve our lives on a daily basis; the smartphones we carry in our pockets, the cars we drive, the ever-enhancing treatment options, surgical techniques, and life expectancies. Nobody questions the importance of science. The humanities, however, are often not so well considered. The term ‘humanities’ first originated in the Renaissance Latin phrase – ‘studia humanitatis’ – which translates as ‘the study of being human.’ Put simply, the humanities are a collection of academic disciplines which explore aspects of society and culture – an examination of what makes us ‘us,’ in more than just the biological sense. To this end, the humanities is a broad umbrella term which encompasses an expansive array of subjects, including specialities such as language and linguistics (both modern and classical), literature and the classics (including Greco-Roman mythology, philosophy, and archaeology), art, history, law and politics, international relations, the visual and performing arts (including cinema and film, scriptwriting, theatre, and dance), music, religious studies, anthropology, psychology and sociology, media studies, journalism, feminist studies, cultural studies … and this list is by no means exhaustive! Many of these subjects, when taken at immediate face value, may seem entirely disparate from each other but, if we take a closer look, we can see that they are all intricately interlinked, and the skills learned in one specialism can easily feed DOI: 10.1201/9781003292067-2

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into another. For example, author and historian Sarah Wise describes the study of history as being an exercise in detective work – our view of the past having the ability to piece together the lives and experiences of people disconnected from our own experiences through time. Sarah holds a master’s degree in Victorian Studies from Birkbeck College, University of London, and her debut work The Italian Boy: Murder and Grave Robbery in 1830s London was shortlisted for the 2005 Samuel Johnson Prize – going on to win the Crime Writers’ Association ‘Gold Dagger’ for Non-Fiction,1 and her work has been described as being ‘a haunting blend of scholarship and period empathy’ (Iain Sinclair, Daily Telegraph), and as ‘[shining] a light not only on … turbulent period[s] of … history but on humanity itself’ (Clare Clark, The Guardian). 2 Sarah views the inclusion and understanding of the lived experiences of others as pivotal considerations in her writing: I think social history can be a fantastic resource for understanding the human condition. It can encourage empathy and, as people are more than their physical bodies, it underlines our shared experiences – across time. In my books, I try to use the gaps and the silences as a way of thinking about the past and what does and does not get left behind in the archives. My guiding question is always: how much can we piece together anything meaningful about people who never left testimony about themselves? In the likely absence of their own authentic voice, who could we trust to tell their story, and put their point of view, in an honest, sympathetic, and meaningful way? I have written about paupers and vagrants in the early 19th-century whose very bodies, forfeit to the anatomy schools after the passing of the 1832 Anatomy Act, contributed so much to medical education and to improving surgical techniques. I tried to obtain a picture of what their lives on the streets were actually like. What sort of people could simply disappear unnoticed in a big city? Why, even in death, did their identities remain mysterious? How much of the history of the very-poor – the destitute – has come down to us? What did they think of themselves? As well as providing us with context, and assisting in the development of empathy, the study of history also has the ability to improve our skills of communication in its most basic format – the words we choose, and the arguments we put forward. Leicestershire-born Jake Hallam KC is a leading criminal barrister, who has appeared in many high-profile criminal trials in Britain, involving cases such as homicide, corruption in public office, historic sexual abuse, cybercrime, international criminal conspiracies – and diamond robbery. Jake details his pathway into law as being one born initially from a love of the past, and sees the skills he developed throughout his study of history as pivotal to his successful career in law today: I read History at university largely because I liked facts about people who are long dead or about countries that don’t exist anymore. There was a little

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more to it than that, but not much more. There are many books of scholarly history that are as dry as the bones of the people they’re written about, but there are some whose writing carries you along with them. Studying it for three years brought the analytical side of the subject more to the forefront though – learning how to evaluate arguments, perceive bias, filter opinion to try and discern the fact, and find and justify your own point of view. From History to Law is a fairly well-trodden path, and I took it because I was able to put the skills I’d acquired to use. Analysis and argument building is all well and good, but language – the words you chose to present your argument, to make your point and seek to persuade others that yours is the right one, matters. In terms of interpretation and communication of both information and ideas, it can be seen that the study of the humanities is vital. Nevertheless, many specialisms may not initially seem relevant to the study of medicine or healthcare. You may still therefore find yourself wondering – what can the humanities do for science? a. THE TWO HEMISPHERES There is a common misconception that there is a disparate relationship between the humanities and science, but scratch below the surface and you’ll see that one cannot possibly survive without the other. To illustrate, a short (and simplistic) anatomy lesson is in order. The human brain, of course, has a complex anatomy, being formed of myriad structures – including white and grey matter, lobes, and sulci – but let us simplify it here into merely two distinct hemispheres. Each hemisphere is responsible for certain tasks – a separation which is known as brain lateralisation. The left hemisphere is responsible for logical thought, such as that undertaken when thinking about subjects like science or mathematics, while the right hemisphere is more adept at performing tasks relating to creativity and artistic expression. The two hemispheres communicate with each other by means of the corpus callosum, which we can think of as being like a telephone wire, ensuring that each side of the brain can interact with the other. If the corpus callosum is severed (corpus callosotomy), or damaged, the two halves are prevented from communicating with each other, which can lead to functional neurological problems. In extreme cases, this can result in a condition known as split-brain syndrome (callosal disconnection syndrome), which is characterised by features such as visual disturbances, and perceptual difficulty.3 In extreme cases, the split brain can result in conditions such as alien hand syndrome – a condition in which one hand is not

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under the control of the conscious mind. For example, a 77-year-old woman who suffered a cardioembolic stroke later reported observing her left hand moving around without her knowledge while watching television – even stroking her face and hair as if somebody else was controlling it.4 While alien hand syndrome is rare, it serves as a good example that the brain requires both halves to function fully as a whole, and proper brain function is best achieved through good communication between the two hemispheres. We can see split-brain syndrome as being the divide between the humanities, and the sciences. If we fail to bridge the divide, we cannot perform to the best of our ability – in any sphere. By excluding the humanities from scientific study, we are in effect cutting our own lines of communication. b. C. P. SNOW – THE GREAT DIVIDE While the narrative of C. P. Snow may initially appear outdated, the proper understanding of any situation is always reliant upon its context. To that end, without having an appreciation of the beginnings of arguments, we cannot fully understand and appreciate points of view and opinions formed and expressed at the end point. C. P. Snow therefore becomes relevant in terms of historical setting and background understanding, and has been included here to contextualise the longstanding nature of the perceived divide between the arts and sciences. Charles Percy Snow (1905–1980) was a British novelist, and physical chemist, who worked in molecular physics for 20 years and, at the outbreak of World War II, became a scientific adviser to the British government. 5 Having significant professional experience within both the sciences and the arts, in 1959 he presented his Rede Lecture, in which he argued that practitioners of art and science not only understand little, if anything, about each other’s disciplines, but also have little desire to understand. Communication, argued Snow, is, as a direct result, limited between the two spheres. By training I was a scientist: by vocation I was a writer … [I have had] intimate friends among both scientists and writers … [and] constantly I felt I was moving among two groups – comparable in intelligence, identical in race, not grossly different in social origin, earning about the same incomes, who almost cease to communicate at all, who in intellectual, moral, and psychological climates had so little in common … one might have crossed an ocean.6 In other words, Snow asserts that the arts and sciences essentially stonewall each other – having so much in common, and yet refusing to open channels of discourse due to lack of both understanding and appreciation for each other’s skills.

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Snow highlighted something which, at the time, had been poorly documented, but is now a well-recognised divide. Writing in 2019 for the Canadian Journal of Science, Mathematics and Technology Education, Martin Braund and Michael J. Reiss assert that, while art seems to be as old as human existence, the earliest manifestations of science in our culture are harder to pin down. While both disciplines have rich, and individual, historical context, Braund and Reiss argue that neither is complete without the other and, in practice, science is made more complete by its relationship with the arts. To highlight this, they argued not only that the manner in which the arts and sciences are taught does not comply with a real-life view, but also that science requires both creative and critical thinking to enable innovation. Indeed, they go as far as to say that scientific thought is, from its outset, stimulated by artistic creation, and that successful partnership between the disciplines is what lies at the heart of the modern economy. With this in mind, they concluded that curricula should be organised in a way which accommodates both science and the arts, but particularly in a way which utilises the arts as a means of engaging learners with the sciences, and therefore assisting in student retention to the study of scientific fields.7 This runs in agreement with Snow’s assertions, some 60 years earlier. Snow’s view of scientific education was that ‘at eighteen, our science specialists know more science than their contemporaries anywhere, though they know less of anything else.’8 Furthermore, Snow argued that this lack of understanding, and gross communicative divide, was of detriment not only to each discipline, but also to society as a whole: There seems then to be no place where the cultures meet. I’m not going to waste time saying that this is a pity. It is much worse than that … At the heart of thoughts and creation we are letting some of our best chances go by default … Those in the two cultures can’t talk to each other.9 How, then, can we as scientists help bridge this communicative divide?

c. WHAT CAN THE HUMANITIES DO FOR SCIENCE? To answer this question, it is important that we understand that the humanities encapsulate the power of ideas. The study of the humanities helps us better understand the ever-changing world around us, as well as our roles within it, our moral values, and our spiritual/religious understandings and needs. While our ability to communicate can bring us into contact with new cultures, the humanities are vital in decoding the raw data we collect and bridging the divide – promoting equality, tolerance, and social justice between individuals, communities, and cultures. The humanities encourage us to take imperfect information and think about it creatively, highlighting and teaching the importance of examining several sides of any question,

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and encouraging us to seek deeper meanings between the superficial lines of the information we are given. Edinburgh-based conceptual artist Sarah Wilson describes the process of creating art as being one of layered emotions, with the purpose of art generally being to open channels of conversation: I find the thought process behind a piece to be the most important element, even more so than the final artwork. Works by artists such as Tracey Emin and Marcel Duchamp were created from complex ideas, and the final results have so many layers it gives the viewer the opportunity for both positive and negative discussion. Sarah’s own work is often deeply personal, and she uses art as an expression of her own emotions, whilst at the same time thinking about relatable elements of her work and turning the creative process into an expression of shared experience. It is important to Sarah that viewers of her work not only appreciate her emotions, but also experience their own: I struggled with the loss of my parents and, as I grieved, I slowly built up a body of work around the subject of memory. The result was a large installation that included items my parents had kept – not just in case – but just because. I had no idea of the history of these secret memories, and so I encased them in resin and had them framed. There were 17 resin blocks of my parents’ memories – trapped like insects caught in amber. Whenever this installation has been shown to the public it has been greeted with strong tertiary emotion. People can relate strongly to seemingly insignificant items as they are familiar – whether it’s a cinema ticket stub, or buttons. It sparks a memory, and therefore a strong feeling. The use of objects to promote empathy is not limited to the world of art. The Auschwitz–Birkenau Memorial and Museum, for example, maintains vast displays of personal objects belonging to victims of the Holocaust, including luggage, jewellery, cutlery, and shoes. These familiar, everyday items provide links from the viewer to the victim, and as a result convey lived experiences, and promote cognitive empathy (the ability to see situations from someone else’s perspective). Through these relatable items, the viewer is given an opportunity to place themself directly within the lived experience of someone from the past. In circumstances where individuals are lacking (or have limited) real-world role models to enhance their understanding of diverse groups, there is the potential for them to unconsciously form negative images based on stereotypes, limited experience, and fragmented perception.10 In clinical situations, these negative stereotypes have

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the potential to be extremely harmful, with people who experience the fear of being judged by negative stereotypes (for example relating to weight, age, race, gender, or social class) being more likely to have health conditions such as high blood pressure, and depression. People who feel stereotyped are also more likely to be distrustful of their doctors, and less likely to engage with proffered treatment options, and preventive care.11 I attended a local sexual health clinic because I couldn’t get to my GP to collect my contraceptive pill. I’ll admit I was a bit heavier than I wanted to be, and I was very self-conscious about it. As I walked into the consultation room, the male doctor greeted me with ‘oh, you’re a big one, aren’t you,’ and spent the whole consultation lecturing me about my weight. Before I left, he told me that before eating anything I should always think about how ‘disgusting you look to everyone else.’ I left in tears. I can see what he was trying to do – shock me into eating salad. But it didn’t work, and I never went back to that clinic again. – Anon Engagement with literature is a further, fantastic way to expand our horizons, and challenge stereotypical views. In terms of fictional material, there is empirical evidence that readers’ engagement with imagined narratives involves them taking on the inner perspectives of the characters involved – and the empathy developed as a result is not limited to only one character. In fact, it is possible for a reader to move in and out of different perspectives, and within the processing of fictional material there is room to undergo a great deal of psychological movement, empathising not only through the characters’ experiences but also developing perspectives based on information that such characters may not have access to.12 Journalist and writer A. J. West describes the process of writing as being one of shared understanding, in which the author not only seeks to describe their own inner thoughts, feelings, and experiences, but also tap into those of their audience by relating to universal human emotions: As a novelist, I try to reach inside my own experiences and tell stories that say something about life in a way that feels honest and original. What does love really feel like? Why are we angry or afraid? Not the explanations accepted by popular culture, but the real feelings that drive us all. Like any comedian, filmmaker, or musician, I remind myself of one rather unpopular truth: that we are all pretty much the same. Our worries, hopes, best features and worst failings are actually pretty similar when it comes down to it, if not identical, and I hope my writing might help to remind my readers of that fact, because I often forget it myself.

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And the positive effects of narrative fiction are not only available to those who read. While audiobooks have traditionally been viewed as ‘not as good’ as the written word, in recent years there has been an upsurge in their popularity, and research has found that engagement with audiobooks has the ability to teach skills of critical listening, improve vocabulary, and increase comprehension of the written word.13 West is keen to expand on this further, stating: Audiobooks are so often treated as the runt sibling of ‘proper books’ when, in fact, I can think of no more natural form of storytelling. The vocal tradition goes back millennia, long before the invention of the printing press or even ink itself. Listening to a spoken story can be a deeply immersive experience, blending the imagination with the hypnotic sound of someone’s voice, whispering to us wherever we may be, in a moment of perfect privacy. It’s like a play in a darkened room, just for us. Audiobooks can ease stress, quell, and comfort us, excite us, baffle us, and give us joy, all while we do the washing up, take the train home, or fall asleep. I think that’s magical. Skills taught within the humanities (particularly within literature, music, and the creative arts), include the ability to detect and decipher such techniques as allusion (indirect references to persons, places, historical events, or literary works) and symbolism (objects, colours, sounds, places, etc., which can provide meaning and insight into other themes). This is all very interesting in terms of art and entertainment – but how can decoding such information assist us in our professional lives? Let us take, as a scientific example: the case of the Vacanti mouse. In 1997, a photograph was released of a mouse which had been implanted with labconstructed cartilage in the form of a human ear. The purpose of the laboratory study had been to enable better understanding of the potential for artificial growth, and surgical reconstruction, of human body parts14 – but the general public reacted with widespread shock and derision, promoting a wave of ethical debate, and antigenetic engineering campaigns. The mouse began to be referred to in the media as ‘Franken-mouse’ – but is this a harmless pop-culture byname, or something deeper? The allusion to Frankenstein: Or the Modern Prometheus (Frankenstein) is obvious. First published in January 1818, and to be explored in greater detail in an upcoming chapter, Frankenstein is a science fiction novel by English writer Mary Wollstonecraft Shelley; a Gothic horror, tragic romance, and parable, which took such a firm hold over the public imagination that it has now been reworked and reimagined for over 200 years. Almost everyone knows the story of Frankenstein. It is the tale of the ‘mad scientist,’ and his ‘creature’ – a man composed of stolen

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body parts, brought to life by the powers of electricity, and experimentation. But, if you are unfamiliar with more intricate elements of Frankenstein as a literary work, it is easy to miss the deeper connotations and meanings to be taken from its reference. While a critical reading of Frankenstein shows a relatively balanced view of scientific experimentation – which includes the potential for science to improve the lives of many – to the layperson the work is commonly viewed as a commentary on the cruel nature of the scientist, and the ability of experimentation to cause not only great harm to its subjects, but also a loss of moral perspective on the part of the experimenter.15 Frankenstein is therefore often referenced as an expression of scientific anxiety and, as such, the prefix ‘Franken-’ is commonly used to describe something which is considered to be frightening, or dangerous, because of the unnatural way in which it was created. The use of this prefix is often intended to create a ‘charged word’ – the results being catchy and having the ability to display ‘red flags’ and provoke fear.16 ‘Franken-mouse’ therefore caused people to not only examine their own moral ethics, but also provided a source of fear, with many beginning to question just how comfortable they really were with the advances of modern science and technology. By better understanding the influence of Frankenstein as a display of public mistrust, we gain a new perspective on attitudes towards scientific experimentation and research. This becomes relevant when we consider that public anxieties regarding the perceived ability of science to lose sight of its moral perspective have persevered within arguments such as those surrounding organ and body donation – particularly at times of proposed changes to legislation – issues which have the potential to affect thousands of lives. Furthermore, the study of not only literary history but also history generally plays a vital role in our understanding of not only our past, but also our present and our future – and this understanding is frequently promoted by the use of art. For example, Egyptologist Prof. Joann Fletcher describes her career path as being heavily influenced by ancient works of art, and the interpretations of life and society which are able to be gleaned from them – enabling not only our understandings of our cultures, origins, and ancestors, but also deepening our understanding of intricate channels of communication: Even before I could read, I had a huge passion for ancient Egypt which all came from encountering Egyptian art in my parents’ books. Like most children, I was immediately drawn in by the colourful images, clean lines, and apparent simplicity of what the Egyptians were trying to portray, and it affected me so deeply I’d already decided to become an Egyptologist by the age of 6. The more I’ve learnt about their culture, the more I’ve fallen in love with their take on the world, how they made sense of things and were then

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able to then communicate this in such a sublime and positive way. Although the images may seem simple and child-like, they are stuffed full of meaning and symbolism, which once unlocked releases all manner of information we can now interpret and understand, much like their so-called ‘picture writing’ of hieroglyphs, which again might seem simple yet functions in a highly complex way to convey a wealth of meaning. If we look beyond the pyramids, temples, and mummies to see these people as they truly were, it is quite clear they were supremely conscious of everything around them and were able to interact with their very particular environment in a very clever way. They knew their place in the world and were able to function effectively within it for over 5,000 years – I only wish we in the modern world had enough sense to learn from their example and try to do this too. From the 6-year-old fascinated with ancient artworks, Joann is now an honorary visiting professor in the Department of Archaeology at the University of York, and has studied human remains not only from Egypt, and the royal tombs of the Valley of the Kings, but from around the world – including examples from South America, Yemen, Italy, Ireland, and the Canary Islands. She has appeared in multiple television and radio programmes and was heavily involved in the 2011 BAFTAwinning Channel 4 production Mummifying Alan: Egypt’s Last Secret, in which a donor body was preserved in order to better understand ancient embalming techniques and the preservation of human tissue. Joann’s empathetic skills of interpretation and communication added to the informative and compassionate nature of this documentary, and the outcome of the work performed can be seen as both historically and scientifically significant, as well as being an illuminating study of the way we view life and death17 – both individually, and as a society. In terms of medical importance, the understanding of individual patient history is vital to their successful treatment, and ongoing care. Just as hieroglyphs are to be decoded, so too can seemingly simple information be taken and decoded to form highly complex and influential meanings; from conversation with not only your patients, but also their friends, families, and the wider circle of professionals involved in their care. By engaging with the arts and humanities, individuals are able to expand their world view on both broad and intimate levels, gaining a greater appreciation of not only individual experiences and opinions, but also broader social beliefs, attitudes, and fears. As a direct result, the arts and humanities therefore directly promote the development of characteristics such as empathy, and social justice, and teach us that, in any given scenario, our own lived experience is not the only reality. By taking into account the experiences and emotions of others, we can gain insight below the waterline of their communication; providing us with greater understanding of their lives and allowing us to become better able to appropriately communicate with them, based on their individual wants, needs, and ability.

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DID YOU KNOW?

I ate his liver with some fava beans and a nice Chianti.18 The above statement, spoken by antagonist Hannibal Lecter in the 1991 horror/thriller The Silence of the Lambs,18 is made as he attempts to make the characters around him feel as uncomfortable as possible about interacting with him. Indeed, if we take his statement at face value, it is undoubtedly unsettling. His declaration of cannibalism serves to demonstrate the depths of his depravity; he is a man capable of quite literally consuming his victims. However, where communication is like an iceberg – in his statement we have only seen the 10%. The study of the humanities – particularly literature – promotes the notion that nothing included within a story is irrelevant and, with this in mind, Lecter’s choice of side dishes becomes less of a passing statement, and more of a focal point. Monoamine oxidase inhibitors (MAOIs) are a type of antidepressant medication which can be used for the treatment of not only depression, but also other nervous system disorders such as panic disorder, and social phobia.19 They do, however, come with serious safety concerns, and patients taking such medication are subject to acutely restrictive dietary conditions. Lists of foods which should be avoided while taking MAOIs include those high in tyramine, which interacts with such medication to cause alarmingly high – potentially fatal – rises in blood pressure. Such foods include liver, fava (broad) beans, and Chianti.20 By looking beneath the waterline of Lecter’s communication, we can now see that his statement is in fact a coded allusion. He is not only letting the other characters, and the audience, know the extent of his brutality, but he is also making a medical joke for his own amusement. Lecter is telling us that he was not taking his medication.

d. COOL STORY, POE – THEORY OF MIND To better illustrate the importance of understanding Theory of Mind, a short lesson in literature is required. Stick with me, here – I promise, there is a point. Interpretations of literature are never concrete. Authors may write from both personal experience and/or imagination, for example, and so to reach our own interpretations of their work we must base our opinions on careful reading, research, and analysis. Every interpretation of a literary work is subjective, and what one individual draws from a text may be vastly different to the meaning garnered by someone else. In its simplest analysis, any work of literature possesses two layers: 1. An initial, surface layer to be taken literally, which presents the facts of the narrative as it is presented to us. 2. A figurative, deeper layer, which presents us with the underlying message of the piece.

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It is important to recognise that a story is very seldom only about the literal details it presents, and authors frequently utilise their narrative in a manner which helps them convey a deeper meaning – often about human nature, culture, or society.21 To look at one author in particular, Edgar Allan Poe (1809–1849), is, in my opinion, by far one of the finest writers of all time, and his work frequently displayed layered, multifaceted communication. While at face value his writing is, of course, dark, and disturbing, when you peel back the layers there is so much more to be uncovered than you might initially perceive. What might seem like a simple, light-hearted story of brutally murdering an old man because of his creepy eye (The Tell Tale Heart, 1843 – read it, if you haven’t), for instance, once dissected is actually the story of an individual who is utterly terrified of their own mortality, and simply cannot cope with the inevitable passage of time. Cheery stuff. Poe is credited with being the father of the detective novel, a forerunner of science fiction, a prominent American Romantic, and one of the greatest Gothic horror authors of all time. He died aged only 40, in mysterious circumstances, being found insensible in the street, wearing someone else’s clothes. The expected response to reading Gothic horror is, somewhat obviously, fear. In this respect, Poe unequivocally meets the brief. His characters frequently scream into the void – and screaming, most definitely, is a universally understood communication. Edgar Allan Poe lived a troubled existence, and grief, mental illness, and addiction hounded him throughout his life. Given the countless miseries he suffered – the poverty, the abandonment, and the deaths of every woman he ever truly loved – who can really blame him for his fixation on the darker sides of life and death? More broadly, if we consider that art is to be treated as expression, and each expression as a communication, then across almost 200 years we can still hear the silent cries of Edgar’s anguish. Indeed, many of his short stories arguably fall into these three categories: grief, mental illness, and addiction. However, as well as horror, Poe also wrote comedy, and his works of comedy provide us with excellent examples of his ability to layer his communication. Far from being light-hearted and amusing tales of supernatural comeuppance, his works of comedy are in fact veiled presentations of delusion, mental illness, addiction, and frequently a commentary on the selfish nature of mankind. Poe is often considered to be, well, po(e)-faced, and, indeed, most of his work concerns the macabre and horrific; however, he also envisaged a twisted, Alice in Wonderland world of strange and unsettling laughter. It is in his comic world that he presents horror as a counterbalance – a distorted, unsettling, mirror image of the face-value entertainment he offers to the reader. By masking the horrible with the fantastical, Poe presents us with silent screams – rendering his humorous compositions reminiscent of a parody of Macbeth’s great soliloquy: these are tales told by idiots, full of sound and fury, signifying more than you’d first imagine.

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Let us consider, for example, his 1844 short story The Angel of the Odd. The tale is as follows: the narrator, arrogant and vain, proclaims that there are no such things as odd events, and that anyone who believes in strange occurrences is irrational, and not as educated as he. The Angel of the Odd – a creature made entirely of bottles and barrels – then appears, and proceeds to drag him, kicking and screaming, through a humbling series of unfortunate, odd events – including a house fire, an impromptu naked run, and an incident with a hot air balloon – until, in the end, he is suitably re-educated on the matter. While at face value this is a whimsical work of slapstick, the true horror to be found in The Angel of the Odd lies not in the raucous humiliation, or comical interactions, but in its propensity for masking the terrible. The Angel of the Odd is in fact on a mission to break the spirit of the narrator, the only acceptable outcome being one of subservience, and belief in the absurd. At the end of the story, the narrator has been brought to heel, and he now believes what he is told. The screams of laughter to be found within The Angel of the Odd could easily be replaced with screams of fear. Perhaps the most insightful line in The Angel of the Odd, is born from the painful suppression of the narrator’s spirit as, following two romantic rejections, he gallantly declares, ‘I now considered it high time to die.’22 There is, undoubtedly, an interesting hypothetical argument to be proposed here around how well our witless hero would have coped on modern-day dating apps. But, in the absence of online matchmaking for the nineteenth-century bachelor, what Poe actually describes with this statement is suicidal ideation in the face of growing social hopelessness. The narrator has been left so traumatised by his abuses that the only avenue he now sees open to him is the termination of his very existence. The Angel of the Odd, an entity composed entirely of junk, and master of slapstick moral lessons, is in fact far more powerful than at first we realise. Poe’s influence on the world of art and literature is widespread. Have a go at the following ten questions. While these are, admittedly, remarkably easy – they should go some way toward highlighting things you may already know, but have never really considered before. 1. Poe was a forerunner of which literary movement of the nineteenth century? A. Aestheticism B. Pre-Raphaelitism C . Verismo 2. The Tell Tale Heart contains allusions to which famous Shakespeare villain? A. Iago B. Caliban C . Lady Macbeth

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3. The Edgar Awards are given for achievement in what literary genre? A. Horror B. Mystery C . Romance 4. Which of Poe’s works is said to have had such a strong influence on Herman Melville that he went on to write Moby-Dick (1851)? A. MS. Found in a Bottle (1833) B. The Narrative of Arthur Gordon Pym of Nantucket (1838) C . A Descent into the Maelstrom (1841) 5. On his deathbed, what were Edgar Allan Poe’s last words? A. ‘Lord, help my poor soul’ B. ‘I must go in; the fog is rising’ C . ‘I want nothing but death’ 6. Romanticism acted as a counterbalance to the ideological principles of which literary movement? A. Naturalism B. Realism C . Rationalism 7. The Facts in the Case of M. Valdemar (1845) is a parable surrounding which nineteenth-century medical movement/therapeutic system? A. Galvanism B. Mesmerism C . Anaesthesia 8. Edgar Allan Poe is thought to have suffered with which of the following conditions? A. Dipsomania B. Hypochondriasis C . Pica 9. The Masque of the Red Death (1842) is thought to be based upon which epidemic? A. Yellow fever B. Bubonic plague C . Cholera 10. Which infectious pulmonary condition links Edgar Allan Poe to his literary influence, John Keats? A. Tuberculosis B. Influenza C . Pneumonia

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10. Tuberculosis (A) 9. Cholera (C) 8. Dipsomania (A) 7. Mesmerism (B) 6. Rationalism (C) 5. ‘Lord, help my poor soul’ (A) 4. The Narrative of Arthur Gordon Pym of Nantucket (1838) (B) 3. Mystery (B) 2. Lady Macbeth (C) 1. Aestheticism (A) ANSWERS:

What Did You Score? 8–10 Excellent! Have a glass of Amontillado as a reward. 4–7

Moderate. Read Glover’s Leonidas, Wilkie’s Epigoniad, or Lamartine’s Pilgrimage to brush up your skills.

0–3

Embarrassing. Very surely you do not dream.

For anyone who hasn’t studied literature – or Edgar Allan Poe – even despite having read the information I’ve provided, that task probably wasn’t very easy. Nor did you likely appreciate the literary references in the scoreboard – the allusions to the short stories The Cask of Amontillado (1846), The Angel of the Odd (1844), and The Black Cat (1843). In the face of this knowledge, it would be very easy for a specialist in Gothic literature to decide that, clearly, you are ignorant, and uneducated. Someone who answers these questions very easily can only be superior to you. Right? Of course not. For someone to not understand something does not render them stupid, ignorant, or less educated than yourself. It only means that you have different interests, focuses, backgrounds, and life experiences. Furthermore, the manner in which an individual says something, or their body language, can transform an entire conversation. This is where the importance of exercising Theory of Mind comes to the fore. Sarah Davies is the author of Talking about Oracy, which focuses on the development of effective communication throughout both childhood and beyond. She is currently

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Assistant Head Teacher at a secondary academy in the North West of England and, alongside her passion for teaching English, has written articles for publications such as TES, Sec:Ed, The Headteacher, and The Teaching Times. Sarah describes effective communication as a layered process, of which Theory of Mind – the ability to read someone else’s body language, thoughts, and emotions – is key to achieving: Essentially, our ability to communicate derives from much more than our capacity to hold a monologue. Even respecting the fact that, for a dialogue to take place, one must be able to both speak AND listen (instead of just constructing what you will be saying next), is a fundamental part of developing our oracy skills. On top of this, though, there are a number of key factors that we should take into consideration when we endeavour to classify ourselves as an effective communicator: the ability to read and interpret body language; an awareness of different tones that could be exhibited and how to craft our responses accordingly; the construction of our ideas in the most efficient way possible; taking care and consideration for any social and emotional factors that may be influential to the audience in question. It is important to recognise how explicit awareness of these key components of oracy are also integral to developing life skills that will be applicable outside of the classroom. Theory of Mind can best be demonstrated by the performance of a simple False Belief experiment. 23 For instance, imagine you have two children, Jimmy, and Susie. You leave Jimmy in the corridor, and present Susie with a packet of sweets, and ask her what is inside. Susie will invariably say ‘sweets.’ When the packet is opened, however, there are in fact marbles inside. Whether or not Susie has yet developed Theory of Mind is demonstrated in her ability to answer the following question: ‘When he comes into the room, what will Jimmy think is in the packet?’ If Susie has not yet developed Theory of Mind, she will say ‘marbles.’ If she has developed Theory of Mind, however, she will correctly identify that Jimmy has, as yet, had a disparate experience to that of her own, and acknowledge that just because she knows something, it doesn’t mean everyone else will – and her answer will be ‘sweets.’ Theory of Mind is what enables us to think about, and appreciate, the experiences and perceptions of others – effectively, the ability to put ourselves in someone else’s shoes. It is how we recognise people’s motivations, understand their behaviour, and gain insight into their inner thoughts: ‘I am late, so they think I’ve stood them up;’ ‘The dog ate my homework, but the teacher is going to think I didn’t do it.’ Theory of Mind is both a highly sophisticated skill, and a very basic necessity for human communication. By exercising Theory of Mind, we are able to recognise that

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what is easy for us individually, may be difficult for someone else; understand that someone who hasn’t completed our course of study may not be aware of many of the things we specialise in; acknowledge how someone else might be feeling, what they find interesting, and what responses an individual is having to what we are saying. Scottish entertainer Gus Lymburn has been working in stand-up comedy since 2006 and has a somewhat cavalier attitude to his profession. When the Scottish Comedy Awards awarded him Best Compere in 2016, for instance, he wasn’t even there to receive it: ‘I didn’t think I’d win so I was with my mate Paul in a daffodil field in Dundee, a little worse for wear. Folk were calling going “you’ve won, you’re meant to be here collecting your award!” … daft, eh!’ And yet, despite thinking himself ‘daft,’ Gus is undeniably a very talented – very funny – comedian, and his ability to ‘read the room’ is formidable: My job in its most primitive form could be described as a manipulator of emotions. Unlike music, for example, it rarely gets separated into different genres, so it falls under the extremely vague category of ‘comedy.’ As a performer you get presented with a room full of people from varied cultures, ethnicities, sexualities etc., all with the same objective – to laugh at jokes. Sounds easy, but with so many individual personalities with multiple tastes, it falls on the performer to try and unite that room as one unit as quickly as possible. Imagine being a chef, told to make a meal for 150 guests, without any prior knowledge of dietary requirements. Chances are you’d get it wrong to some degree … For example, a London comedian doing jokes about The Tube isn’t going to land that well doing those jokes in Aberdeen – chances are nobody will relate, and therefore the humour is lost. Over years of gigging, performers develop the skill of ‘reading the room.’ The ability to make strangers relax and form a temporary bond of shared enjoyment. Knowing when to hold back, or alternatively when to go full throttle to win them over. Having the ability to know what subject matter might not garner the desired response, or even quite simply when to tone back on the expletives. Some performers seem to have an innate ability to hold a room, to quickly gain respect and command the stage. A lot of the time, writing material becomes not so much writing what YOU find funny, but writing what you assume THEY, your audience, will find funny. Making your material accessible to the widest array of people you possibly can narrows your chances of it failing to land. None of us are born with Theory of Mind, it is something we develop throughout our childhood and formative years. It is worth noting that individuals with autistic spectrum disorders can struggle to develop and exercise Theory of Mind correctly – rendering them vulnerable in many areas of life. Furthermore, the importance we place upon the ability as a society can often differ. For instance, there is a contrast

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between US children (who have been raised to be individualistic) who recognise the individual beliefs of others from a younger age, and Chinese children (who have been raised to be collectivist). 24 Findings such as this are important in helping us acknowledge both individual and cultural differences across our communication; however, these differences are not set in stone. Unlike, for instance, language acquisition, which takes place during a critical period of learning (between the ages of birth and puberty), 25 Theory of Mind can be developed throughout a whole lifetime and is a critical tool in reading and understanding literature26 – which is filled with characters to get to know, and situations to be absorbed, interpreted, and understood. This therefore means that you can directly improve your Theory of Mind by reading – and, indeed, engaging with other forms of art – at any stage of life. It is remarkably easy, when you’re in a position of trust, and responsibility, to develop a ‘God Complex’ – to overestimate yourself, your abilities, and your importance. But just as you are not stupid, ignorant, or poorly educated for not knowing the answers to questions on a quiz outside of your specialism – the patient who does not understand their conditions, treatment options, lifestyle choices (etc.) are not stupid, ignorant, or poorly educated. We should consider that everyone is as clever as they need to be to be secure in their own place in the world – or, rather, as educated as they need to be to live their current existence. A railway engineer, for instance, does not need to understand the intricate mechanics of a hip replacement – he needs you to understand that. Just as you need him to understand how to drive and repair a train.

e. THE NOTES BETWEEN THE NOTES BETWEEN THE NOTES: TALKING TO EDS CHESTERS The crossover between medicine and the humanities can often be best illustrated by practitioners who have experienced both fields. To this end, musician and osteopath Eds Chesters shares some insights from his careers within both music and medicine (see Figure 2.1). Eds Chesters is a drummer and musician from County Durham, who FIGURE 2.1  Musician and Osteopath Eds Chesters first became involved with music at the age of 11. Eds’s musical style has been heavily influenced by swing, and the music of the 1960s, although in his formative years he admits he would attempt to imitate

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drummers such as Alan Wren (The Stone Roses), Ringo Starr (The Beatles), and John Bonham (Led Zeppelin) before finding his own style – favouring a practical learning approach and joining a band, rather than taking lessons. At the age of 19, he gave up studying chemistry at Newcastle University and embarked upon a tour of America with a dance/electronic group called Soho. Eds is most well known, however, for being a member of indie-rock band The Bluetones (1993–present), and with them has achieved thirteen Top 40 singles and three Top 10 albums in the UK charts, playing and touring extensively around the UK, Europe, America, and Japan. Eds cites the creative process involved in writing music as being one heavily reliant on communication: It has to be, because at the end of the day, there are four of us making the music! As [a] drummer, I can meter songs, or just change the rhythm slightly, and that can spring loads of ideas from the [other] musicians … The idea of rhythm and keeping things simple is crucial. You’ve got to make it from the start of the song to the end of the song without having anyone trip up on the dancefloor. And you’ve got to keep a song's movement and fluidity going27 – considerations which are only achievable by listening to, and paying attention to, the other members of the band. A 2018 multi-institutional US survey found that, while literature, music, theatre, and the visual arts play an often uncertain and limited role in medical education, exposure to the arts and humanities is positively associated by students with improved positive personal qualities, such as those of empathy, and emotional appraisal.28 Music, in particular, is an incredibly powerful tool for communication, and is arguably one of the oldest and most engaged with forms of art. Eds himself describes music as a ‘communicative phenomenon,’ with it being able to not only convey a wide range of emotions to those who listen, but also, by necessity, promote good communication between musicians. Emphasising the cooperative nature of music-making, Eds says that: Music is all about holism. Individual musicians can be fantastic at their own instruments and sound great playing alone, but when they play together in unison, listening to each other, and interacting with other musicians – a certain magic happens. This can be loosely summed up with the phrase – the whole is greater than the sum of its parts. Alongside his musical career, Eds is also an osteopath, having qualified from the British School of Osteopathy in 2010. While the leap from music to medicine might, to many, appear potentially daunting, Eds is a firm believer that it takes more than a scientific mindset to become a competent clinician:

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What makes a great practitioner is more about personality, rather than what you have studied. While I would completely agree that the sciences are a useful starting point to understanding the theory of medicine and healthcare, I believe any relatively intelligent person could learn anatomy, physiology, and pathology, the red flag system [in relation to musculoskeletal disorders], differential diagnosis, and diagnostic skills, and become a competent primary care practitioner. With this in mind, Eds has found that a lot of his skills as a musician were transferable: Music has many parallels with physical therapy. Touch is also a communicative phenomenon, and the skills I’ve developed as a drummer (which are common with other musicians) are directly transferable into physical therapy – for example, a heightened range of palpation skills. Great drummers can be extremely gentle, as well as powerful – able to express a wide range of emotion. In physical therapy, rhythm is also a useful tool for calming down irritated tissues and Golgi tendon organs [proprioceptors]. However, medical and allied health specialism training is, undoubtedly, intense, and the study of medicine, and other health-related fields, is famously competitive. As of 2022, the Medical Schools Council listed the average requirements for a place in medical school (in the UK) as being a minimum of grades AAA at A level or Advanced Highers, with Chemistry and Biology being compulsory. 29 While these high standards of qualification do serve a purpose (with knowledge, accuracy, and clinical skill being of paramount concern in a successful clinician), Eds does feel that, overall, this is doing the medical field a disservice: I think the profession is missing a lot of talent, because it favours high achieving 16, 17, and 18-year-olds over reasonably intelligent, communicative, young and mature people with common sense, and some life experience. Empathy and patient-centred care are, in my opinion, the key attributes to a good diagnosis and evaluation, and hence care and treatment plan. That is for not only the medical profession, but all allied health and care workers. It is a shame that medical schools are missing multitudes of potential doctors because they favour an A-grade in Physics over a caring personality. It is a notable consideration that, from the outset, scientific skills are prioritised above the arts and humanities. This immediate marginalisation gives the latent impression that these must therefore be ‘softer’ subjects and sidelines their importance as a major tool for professional development. Furthermore, the study of medicine also has a high rate of attrition. In 2018, the following rates of attrition were recorded for medical students globally:

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Recorded Attrition Rates (2018) Medical Schools Surveyed % Attrition UK 14 Ireland 5.7 Nigeria 7.8 Jeddah 20.8 Croatia 26 Pakistan 16 Saudi Arabia 3.8 Israel 12.6 Malaysia 5.9 Other countries 12.5 (average) Source: Arulsamy Anand, ‘Attrition rate and reasons for attrition in medicals schools worldwide- an analysis’, Research Gate (2018) [accessed 18 March 2022].

This could be attributed to a lack of flexibility within a medical education, with many students, including Eds, initially struggling – and potentially becoming overwhelmed – with the demands of patient contact in direct contrast to the skills taught within the lecture hall. Eds says of the issue: Being a relatively mature student when I started the osteopathy degree meant I had a real thirst and dedication to the study. I thoroughly enjoyed my first two years at uni, studying the theoretical basis of what I was about to put into practice. I got a bit of a shock in years three and four when patient contact in clinic became a large part of the course, and I struggled with decision making when it came to evaluation of the patient, and diagnosis. Two major causes of attrition have been found to be academic difficulty, and absenteeism, and other reasons identified include isolation, and personal or psychological problems.30 It can be seen that the intensity of medical and allied health specialism training has the potential to overwhelm where it seeks to instruct, and by not taking an holistic view of students and their individual skills, many competent practitioners can be left feeling isolated, and inadequate: On reflection, the fact I struggled was probably due to the very exacting nature of the tutors and mentors at the college clinic. My skills were in the physical aspect of the job, rather than the cerebral. After qualifying, I became much better at decision making when the pressure was off, and I transitioned from consciously incompetent to unconsciously competent. Eds has practice experience in community osteopathy, and sports injury, and his clinical interests include shoulder injuries, and running mechanics. He also explores therapy in the performing arts, including musicians, and he holds the skills he acquired throughout his career in music as pivotal to his provision of patient-centred

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care today – always seeking to take an holistic view of the patient, rather than focus on merely the physical aspects of their care: Holism is a big part of osteopathy, and a lot can be achieved by identifying the many parts of a person’s presenting problems and addressing them all, the physical, emotional, and the chemical/physiological. The actual treatment, the physical therapy, is only a small part of this. The narrative and explanation of where the pain is coming from, the diagnosis, the reassurance that this happens to a lot of people – provide this, and people find they get better. The great advice about changing aspects of lifestyle, not letting stress get on top of you, some practical ideas about exercise and diet – this is all holism to me. The use of narrative to convey health-related explanations, when used appropriately, can be extremely beneficial, and the take-away message should be that being able to understand and appreciate other aspects of an individual’s life and circumstances goes a long way to providing holistic, patient-centred care: Caring for the patient is paramount. Understanding the patient’s needs, fears, and having an understanding of their day-to-day life including occupational stressors, home and relationship stressors, and physical stressors, should all have heavy weighting when considering a patient’s diagnosis and, more importantly, treatment plan. For a crude example, take chronic heartburn/ oesophageal reflux. Proton pump inhibitors may be a good pharmacological treatment plan, but much more can be achieved by addressing the underlying life stressors, such as diet, lack of exercise, and breathing patterns. Clinicians undoubtedly need to be technically skilled, knowledgeable, and competent – and yet there are other personal qualities which undeniably constitute a well-rounded medical professional. Among these are wisdom, empathy, tolerance for ambiguity, skilled observation, and emotional resilience.31 In the words of The Bluetones themselves – ‘it’s easy living in a bubble’32 – but aligning your perspective with that of your patients, and developing the ability to see beneath the surface of your interactions, will directly impact the quality of care, diagnosis, and treatment that you are able to provide, and as a direct result impact the levels of patient satisfaction you achieve.

f. ISSUES OF ACCESSIBILITY There are a substantial number of ways in which we, as scientists, can benefit from taking an appreciation of the arts. As we do so, however, it is especially important that we recognise the often abstract and imaginative nature of the arts, without feeling a need to apply the senses of logic and order that we are all so used to. In 2010, journalist Bryan Appleyard asked – ‘is science taking the fun out of art?’33

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and it’s a valid question – and one which has been posed by artists and creators throughout history. The Romantic poet John Keats (1795–1821), for example, initially trained as an apothecary and a surgeon, displaying a genuine talent and passion for medicine. But his true passions lay in creativity and literature, and he turned away from his medical career in favour of becoming a poet. Although he died of tuberculosis at the age of 25, his significant talents and literary skill secured him a reputation as one of the finest English language poets ever born. Keats addressed the issues of science and art within his poem Lamia, in which he claims that scientific knowledge and understanding ruins our sense of beauty: Original Text (1820) There was an awful rainbow once in heaven: We know her woof, her texture; she is given In the dull catalogue of common things. Philosophy will clip an Angel's wings, Conquer all mysteries by rule and line, Empty the haunted air, and gnomed mine – Unweave a rainbow, as it erewhile made The tender-person’d Lamia melt into a shade.

Modern Translation Rainbows used to be awe-inspiring: But now we know how they are made, we regard them as unremarkable, ordinary things. Science will explain away religion, use logic to remove all of life’s mysteries, and disprove superstition and imagination. Science diminishes the rainbow, just as it has diminished other beautiful things.

With Lamia, Keats is giving us a warning: now that we understand what a rainbow actually is, and how its colours are made, it is no longer something we admire. It has lost its allure. We can think about this in terms of presenting a child with a magic trick. When the coin is pulled out from behind their ear, their response is to be amazed. But, as soon as they discover the coin was in your palm all along, the wonder is lost. We spend so long trying to understand the physical, scientific aspects of our lives that we forget to nurture our spiritual selves. This is by no means to suggest that we should live our lives in ignorance – but just as we nurture our academic understandings, we must also continue to nurture our imaginations. The loss of wonder Keats describes happens a lot across scientific subjects, and particularly in medicine. Take the study of anatomy, for example. The human body is incredible, and intricate – a thing which should be appreciated and marvelled at. But we so often reduce it to figures in a textbook and lists to be memorised – removing the wonder and appreciation we should rightly have of our own physical form, and its capabilities. Cat Irving, Human Remains Conservator at the Surgeons’ Hall Museum, Edinburgh, shares similar frustration at this apparent separation of the two disciplines:

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The distinction between the arts and sciences is relatively new. Through the Renaissance people were trying to understand the world in a much more holistic way, and it was only as fields became more specialised in the nineteenth, and especially the twentieth, centuries that people started to keep their activities in these artificial and arbitrary boxes. Of course, that isn’t how the human mind works, and science would not have progressed without creative leaps whose inspiration comes from multiple sources. Arguably, this separation has evolved due to the heavy emphasis placed on the factual in the study of the sciences. Medicine as we know it today is a refined practice. It thrives on facts, and scientific deduction – and so this is how the scientific mind has trained itself to think about, and understand, the world around us. Because of this, however, while anyone can appreciate the objective beauty of a painting without needing to understand every small nuance and detail, the sciences can often appear out of the reach of the people and communities which they aim to serve – and so can often frighten them instead as a consequence. Human beings are social creatures; however, we all navigate our lives, relationships, and interactions with distinctly individual communicative preferences and needs. Successfully guiding people through this diverse territory is something which is pivotal within the realms of drama and the performing arts, such as plays, television, and radio performances, which can all have a powerful impact on human emotion and are all reliant upon making the information and stories they present as accessible as possible to a wide variety of audience members. Gerry Kielty is an Edinburgh-based writer, actor, director, and lyricist. He began his acting career in the Edinburgh Dungeons, before moving up to busking on the Royal Mile (winning the ‘Spirit of the Fringe’ award with his band The Martians in 2008) and began working as a Walking Tour Guide in 2007. Thriving on audience engagement and interaction, Gerry has gone on to research, write, and perform educational and entertaining guided tours covering the history of theatre, the history of surgery, and ghosts – with a little quantum physics. His library is very eclectic. I am forever trying to engage people; quickly and completely. If there’s one thing more important than anything else, it’s this: don’t lose them. A ghost tour might not seem like a high-pressure environment, but a single crack in your credibility is fatal. If they think you’re too stupid, or too clever; if they think you’re too silly or too serious; if they think you are telling something not true; that you are lecturing; or that you aren’t completely engaged; s­ uddenly you are just some stranger making noise at them. Audiences can have infinite access needs. We get randoms who have no idea what they’ve bought a ticket for. We get amateur enthusiasts with their own thoughts, we get experts and fanatics who are there purely to catch you out doing something ‘wrong’; and they all need to feel like you’re talking to them

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on their own terms. We also get people with different access needs  -  some who  are non-visual, non-hearing, non-English language, non-verbal and more. Sometimes the adjustment is small – I need to speak slowly because they are lip reading; easy. Sometimes it’s bigger – I need to phrase this in a way that can be easily translated. Sometimes it’s really big – I need to tell this story without relying on words. Expression, body language, hand movements, objects, captions, and translators are just as important as ‘knowing your lines and speaking clearly,’ because it is all communication. They’ll read into everything you do; so, anything you do that is not deliberate will be a distraction. The performance is littered with little moments to test the water or to communicate; I’m checking that they are engaged, that they feel safe enough to laugh or ask questions, and I’m showing them when I want them to relax and enjoy, and when I really need them to focus. Essentially the whole thing is a build up to one climactic story that I need their utter focus on. There’s a violent poltergeist. I’m taking them to a place of danger; but I’m going with them – if they trust me. And that’s ultimately the most important thing to communicate with poise, with expression, with voice and with the words or gestures chosen. They are not alone. In the realm of healthcare and science, making our areas of specialist knowledge accessible to other people – letting them know that they are not alone – is something we can all have a hand in. For example, in 2016, the University of Warwick hosted an exhibition of local artists’ work which aimed to make science and medicine more accessible to the layperson. The event saw seventeen artists and academics brought together for collaboration, and organiser Dr Emma Parfitt said of her inspiration for its formulation: ‘I am a storytelling researcher so … the basic idea was that knowledge, like art, should be accessible to all.’34 With this in mind, several medical conditions were illustrated within the exhibition, for example a piece on mental illness in eighteenth-century Mexico. PhD researcher Rebecca Noble, at the Centre for History of Medicine at the University of Warwick, said of the artwork that it was ‘the result of creative conversations about mental health inspired by the past and I hope it will be thought provoking for others.’35 Art, here, has been able to provide and open channels of conversation between medics and the communities they serve, and support a dialogue which may otherwise not have been given the opportunity to take place. And events such as this do work. The Department for Business, Energy and Industrial Strategy (BEIS) report, Public Attitudes to Science (2019), found that, overall, the general public does find the sciences more accessible, and feels better informed about new scientific developments; however, when compared with survey results from 2014, it can also be seen that the proportion of people who feel informed about topics such as vaccination has fallen and, while there is an upward trend in the

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number of people who view science as important, overall the general public is less likely to see science as being relevant to everyday life. 36 These are worrying statistics, particularly in the wake of the Covid-19 pandemic, and this has been reflected in the levels of misinformation spread across multiple social media platforms. While the rapid production of a safe, effective Covid vaccination has been an incredible scientific achievement, the unregulated spread of misinformation has led to conspiracy theories and uninformed beliefs, such as Covid vaccines altering our DNA, being used to implant microchips, or even sterilise us; that Covid itself is caused by 5G radiation, biological warfare, or aliens; that it is a ‘plandemic’ led by Bill Gates, ‘Big Pharma,’ and the World Health Organization (WHO), or even an elaborate hoax. Other individuals have rejected vaccination as they are mistakenly convinced that they are invulnerable to the virus. 37 As individuals, we believe that our own, personal viewpoint on the world is the objective truth. To that end, our perception of the world around us is what shapes and reinforces this view and, as a result, we can only acknowledge and accept truths if we have discovered them for ourselves. 38 This means that, once formed, attitudes and beliefs can often be difficult to alter, and the provision of information, however accurate, will not alter misperceptions or incorrectly held beliefs if it is inaccessible. In relation to medical provision, it is therefore vital that clinicians make science and health-related information as accessible, and as understandable, as possible. NOTES 1 Wellcome Book Prize, Sarah Wise (2014) [accessed 2 July 2022] 2 Clare Clark, and Iain Sinclair, Sarah Wise (2017) [accessed 2 July 2022] 3 Michael S. Gazzaniga, ‘The split brain in man’, Scientific American, 217.2 (1967), 24–29 [accessed 18 March 2022] 4 Ragesh Panikkath, Deepa Panikkath, Deb Mojumder, and Kenneth Nugent, ‘The alien hand syndrome’, Proceedings (Baylor University. Medical Center), 27.3 (2014), 219–220 [accessed 18 March 2022] 5 The Editors of Encyclopaedia Britannica, C.P. Snow British scientist and writer (2022) [accessed 18 March 2022] 6 C. P. Snow, The two cultures and the scientific revolution: The Rede Lecture, 1959 (Mansfield Centre: Martino Publishing, 2013), p. 1–2 7 Martin Braund, and Michael J. Reiss, ‘The “great divide”: How the arts contribute to science and science education’, Canadian Journal of Science, Mathematics and Technology Education (2019), 219–236 [accessed 18 March 2022] 8 C. P. Snow, p. 36 9 C. P. Snow, p. 17 10 Elizabeth Campbell, ‘Editorial: Teaching and learning through lived experience’, Curriculum Inquiry, 38.1 (2008), 1–5 (p. 4) [accessed 18 March 2022]

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11 Felicia Wheaton et al., ‘Healthcare stereotype threat in older adults in the health and retirement study’, American Journal of Preventive Medicine (2015) [accessed 18 March 2022] 12 Amy Coplan, ‘Empathic engagement with narrative fictions’, The Journal of Aesthetics and Art Criticism, 62.2 (2004), 141–152 (p. 143–149) [accessed 16 June 2022] 13 Rebecca Rego Barry, Is audio really the future of the book? (2016) [accessed 16 June 2022] 14 Y. Cao, J. P. Vacanti, K. T. Paige, J. Upton, C. A. Vacanti, ‘Transplantation of chondrocytes utilizing a polymer-cell construct to produce tissue-engineered cartilage in the shape of a human ear’, Plastic and Reconstructive Surgery, 100.2 (1997, August), 297–302; discussion 303–304 15 H. Davies, ‘Can Mary Shelley’s Frankenstein be read as an early research ethics text?’ Journal of Medical Ethics: Medical Humanities [online], 30 (2004), pp. 32–35, p. 32/33 [accessed 24 May 2020] 16 Robert P. Crease, Franken-physics – Physics world. Physics world: Philosophy, sociology and religion [online] (2016). [accessed 2 July 2020] 17 Keith Watson, Mummifying Alan: Egypt’s Last secret is one man’s life of science (2011) [accessed 12 June 2022] 18 ‘The silence of the Lambs’, dir. by Jonathan Demme (Orion Pictures, 1991) 19 Tahrier Sub Laban, and Abdolreza Saadabadi, ‘Monoamine Oxidase Inhibitors (MAOI)’, NCBI (2021) [accessed 18 March 2022] 20 The Dietetic Department, Brighton and Hove, Sussex Partnership NHS Trust, Foods to avoid when taking Monoamine Oxidase Inhibitor (MAOI) Medicines(2013) [accessed 18 March 2022] 21 Casey Rush, Literary analysis based on I.A. Richards’ four layers of meaning (2012)

[accessed 12 June 2022] 22 Edgar Allan Poe, The complete tales and poems of Edgar Allan Poe (New York: Barnes and Noble, 2006), p. 664 23 Adam See, False-Belief Test, The (2016) [accessed 30 May 2022] 24 Ameneh Shahaeian, Candida C. Peterson, Virginia Slaughter, and Henry M. Wellman, ‘Culture and the sequence of steps in theory of mind development’, Developmental Psychology, 47.5 (2011), 1239–1247 (p. 1240) [accessed 24 May 2022] 25 Catherine E. Snow, and Marian Hoefnagel-Höhle, ‘The critical period for language acquisition: Evidence from second language learning’, Child Development, 49.4 (1978), 1114–1128 (p. 1114) [accessed 24 May 2022] 26 Paula Leverage, Howard Mancing, Richard Schweickert, and Jennifer Marston William, Theory of mind and literature, DGO - Digital original edn (Indiana: Purdue University Press, 2011), p. 1–12 [accessed 23 May 2022] 27 Rhythm magazine, Eds Chesters - Down to earth (1998) [accessed 18 March 2022] 28 Salvatore Mangione, Chayan Chakraborti, Giuseppe Staltari, Rebecca Harrison, Allan R. Tunkel, Kevin T. Liou, Elizabeth Cerceo, Megan Voeller, Wendy L. Bedwell, Keaton Fletcher, and Marc J. Kahn, ‘Medical students’ exposure to the humanities correlates

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with positive personal qualities and reduced burnout: A multi-institutional U.S. survey’, Journal of General Internal Medicine, 33.5 (2018), 628–634 [accessed 18 March 2022] 29 Medical Schools Council, Entry requirements (2022) [accessed 18 March 2022] 30 Anand, ‘Attrition rate and reasons for attrition in medicals schools worldwide’ 31 Mangione, Chakraborti, Staltari, Harrison, Tunkel, Liou, Cerceo, Voeller, Bedwell, Fletcher, and Kahn, ‘Medical students’ exposure to the humanities correlates with positive personal qualities and reduced burnout’, p. 629 32 The Bluetones, ‘Cut some rug’, Expecting to Fly, Superior Quality Recordings, 1996 33 Bryan Appleyard, Is science taking the fun out of art? (2010) [accessed 18 March 2022] 34 The University of Warwick, Exhibition to bridge the art-science divide (2017) [accessed 18 March 2022] 35 The University of Warwick, Exhibition to bridge the art-science divide 36 Department for Business, Energy, & Industrial Strategy, Public attitudes to science 2019 (2019) [accessed 18 March 2022] 37 Seren Boyd, Pushing back – Tackling the anti-vax movement (2021) [accessed 18 March 2022] 38 Various, The psychology book, p. 114

Chapter 3

The Role of the Humanities in Medicine Through Time

From biographies to personal statements, memories to eulogies – we frequently think of, and refer to, our lives as stories. Stripped down to their most basic format, a story will have a solid structure – a beginning, a middle, and an end – and thinking about our lives in terms of narrative can help provide structure and meaning where otherwise we might be met with chaos. In relation to health and wellbeing, a narrative can be used to promote the understanding of topics such as diagnoses, and treatment options, as well as ongoing lifestyle considerations such as diet, exercise, and positive habit forming. In 1978, psychologist Walter Fisher proposed a theory of narrative communication, which asserts, in essence, that human beings are, universally, storytellers. Indeed, it is theorised that the act of storytelling developed in close conjunction with the development of language itself, and it can be seen that stories play key roles in our understanding of the world around us, and our roles within it.1 Stories allow for the transmission of information in memorable ways, and evolutionarily this would have been useful in helping individuals and communities communicate, cooperate, and survive. Across all cultures, we are drawn to stories – possibly because in understanding a narrative we feel more in control of the random nature of life, with our development of empathy playing a key role in our senses of community, security, and sense of self. Indeed, it has been shown that the more compelling an individual finds a story, the more empathetic they become in real life. 2 As part of Fisher’s theory, he stated that, in general, people make decisions based on what they consider to be good reason, with factors such as social history, biography, culture, and individual character determining what an individual considers to be good reason. Essentially, we view the world as a collection of stories from which we choose.3 A helpful illustration of this would be to consider our lives as anthologies, DOI: 10.1201/9781003292067-3

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of which we are all editors. As the editor of our own anthology, we are constantly picking stories to include, and choosing others to remove, and based upon our ever-changing table of contents we constantly re-evaluate our lives, values, and understanding of the world around us. It is reasonable therefore that, should we take the time to pick up and read someone else’s anthology, we would be able to gain insight into their lives, values, and experiences – some or all of which may be vastly different from our own – and help us relate ourselves and our circumstances to them. As Rita Charon, Division of General Medicine at the College of Physicians and Surgeons of Columbia University said: The effective practice of medicine requires narrative competence, that is, the ability to acknowledge, absorb, interpret, and act on the stories and plights of others … Adopting methods such as close reading of literature and reflective writing allows narrative medicine to examine and illuminate … [several] central narrative situations: physician and patient, physician and self, physician and colleagues, and physicians and society. [By developing] narrative competence, physicians can reach and join their patients in illness, recognize their own personal journeys through medicine, acknowledge kinship with and duties toward other healthcare professionals, and … [initiate dialogue] with the public about health care. By bridging the divides that separate physicians from patients, themselves, colleagues, and society, narrative medicine offers fresh opportunities for respectful, empathic, and nourishing medical care.4 However, despite its ability to open up channels of understanding and communication, the placement of narrative within the medical field has become confused. From the late eighteenth century onwards, societal attitudes and technological advancements led to a move away from patient-focused medicine toward a more sterilised view which centred around disease or illness classification. Patient records, particularly during the nineteenth century, frequently only recorded basic facts, such as age, address, and occupation, and it can be seen that the humanity of the patient was often erased and replaced with a more pathological description. 5 While there are emerging strategies such as that of narrative practice – which seeks to treat patients as individuals with their own stories, rather than purely based on symptoms6 – this shift in attitude is proving difficult to reverse. Indeed, in the UK, the National Health Service has even been referred to as the National Illness Service, being criticised for taking a reactive rather than pre-emptive stance to health and healthcare provision. This reflects a traditional ‘passive patient’ model, rather than that of an active and engaged one, and waiting for problems (such as increased rates of obesity, diabetes, etc.) to appear before action is taken to improve the health of the population.7 However, this reversal of attitude is not impossible. It is widely accepted that human behaviour is learned through modelling; a child will watch an adult, and follow their example, for instance. Take, for example, the famous ‘Bobo Doll’ experiment,

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performed by Albert Bandura in the early 1960s – in which preschool-age children who had watched adults verbally and physically abuse an inflatable doll later copied the same behaviour.8 Narrative Learning Theory asserts that the links we establish between example and action are so important that they are utilised consistently throughout our development, from early childhood right through our adult lives, and as such, narratives can provide significant ongoing opportunities for individual learning. Furthermore, narratives not only aid us in navigating life’s problems, but can also guide us through the mundane areas of our day-to-day existence. Whilst narrative learning can transform our worldview, in many other ways it strengthens our sense of self or helps us describe our actions in ways which reflect our own humanity. In other words, narrative learning is a lifelong process, which has an open agenda.9 As we each live and experience our own narrative, hearing the narratives of others can help us enrich our world view, and enable us to make decisions based on wider facts. The utilisation of stories and narratives within the classroom provides children with examples to follow – be they lessons of society, morality, or other – and stories are frequently used within the classroom as a powerful teaching aid. Indeed, Victoria Reay, Early Years (primary) class teacher, describes the utilisation of narrative as being part of the very foundations of teaching: Early Years learning is grounded in narrative. We use stories to ‘hook’ the children’s attention and provide purpose to their learning. Stories help children to understand social conventions, and rule following, as well. As Early Years practitioners we use stories and narratives to help children understand how to be kind, how to think like others, how to understand their own emotions and those of others, and how to respond to social situations, all by using stories. But it is important to recognise that the power of stories doesn’t stop at the classroom door. It is unfortunate that in terms of medical education, facts, theories, and concepts are often presented and discussed with little or no historical background, and as a result students fail to appreciate how a particular field has developed from past to present. Understanding and appreciating the history and motivation behind health narratives can greatly assist our understanding of the role of storytelling in respect of future healthcare-related conversations, and broader healthcare-related discussion. On both an individual and societal level, throughout history narrative has been utilised in relation to the wider public understanding of health and medicine – be it by health professionals, journalists, or conspiracy theorists, and it has long been known that testimonials, or first-person narratives, strongly influence health behaviour and health-related decision making. Gaining traction in the late nineteenth century, a popular medical marketing strategy involves the use of patient testimonials, which (contemporarily) were often

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aimed at increasing sales of ‘cure-all’ wonder drugs, such as Eno’s Fruit Salt (a simple bicarbonate of soda mixture), or Mother Seigel’s Syrup:10

'My illness was indigestion and biliousness. I was weary and disinclined for work. I had splitting headaches, would vomit, and lost my appetite entirely. After a few doses of Mother Seigel’s Syrup, the headaches became less severe; the biliousness went; I had more energy. Soon I won back my lost health completely. For more than twenty years, Mother Seigel’s Syrup has been our family medicine.’

‘In 1896, I began to suffer from indigestion – a dull, heavy pain at my chest, which gave me no rest night or day. The terrible pain grew worse until, at last, I was unfit for work, and very dejected. I took less than one bottle of Mother Seigel’s Syrup, and in a week, the pain which had tormented me so long was gone. It has never come back.’

‘Last summer I began to be troubled with Indigestion. I am turned 73, and have lost my teeth, so I think my stomach trouble Is because I am unable to chew my food. I suffered frequent, severe headaches; became very weak, and fell away in flesh. Then it occurred to me to try Mother Seigel’s Syrup. In the course of a few weeks, the headaches entirely left me. My appetite began to pick up, I slept well, and awoke refreshed, ready for the day’s work.’

Miss Rebecca Turner, Testimonial in the Luton Reporter, 3 March 1910

Mr Edward Preston, Testimonial in the Luton Reporter, 3 March 1910

Mrs Mary Gagg, Testimonial in the Luton Reporter, 3 March 1910

Testimony such as these provided the reader with first-hand, relatable accounts, which brought the experiences of others into view and promoted the experiences of empathy, and emotional connection. They also highlighted the maintenance of health as being a shared experience: ‘This person relates to me in these ways, perhaps this medicine will help me, too.’ In the modern age, this narrative method has evolved to become a powerful strategy in terms of charity promotion, with Charity Digital describing an effective and emotive narrative as being one of the most important tools in a fundraising toolkit.11 In the UK, entertainment-based charitable programmes such as Stand Up to Cancer (SU2C), Comic Relief, and Children in Need utilise not only celebrity influence, but also both narrative and individual testimony incredibly effectively, broadcasting the experiences of others directly into people’s homes to great effect. Indeed, in 2021, SU2C announced a record-breaking fundraising total of £31,169,340, to be directed towards cancer treatment and research.12 In terms of direct benefit to healthcare interactions, the narrative mode can prove extremely influential. For example, a documentary following the treatment for, and eventual death from, cervical cancer, of 27-year-old UK reality TV star Jade Goody in 2009 led to what is now commonly described as the Jade Goody Effect, with more women attending for cervical screening in England and Wales than in 2008.

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In fact, over a third of the 890 women surveyed expressed that Goody’s story had influenced their decisions about cervical screening (40%).13 The use of narrative is deemed to be so influential that many hospital trusts are now implementing a process of story-taking, in an effort to improve not only patient, but also carer and staff experiences and outcomes. Stories are also seen to provide valuable insights into how trusts can improve different aspects of service delivery and care in not only hospitals, but also across community-based healthcare programmes.14 Narrative, here, serves not only as an indicator of patient/carer satisfaction, but also as a means of service improvement, and an indicator of staff morale. By examining the use of narrative throughout medical history, we are able to gain a better appreciation and understanding of the ways in which storytelling can be adapted in terms of public and individual health, and also utilise the experiences of patients, carers, and staff to directly improve ongoing service provision. In order to do this as effectively as possible, it is important that we understand the use of these techniques in context: ‘Without context, a piece of information is just a dot. It floats in your brain with a lot of other dots and doesn’t mean a damn thing. Knowledge is information-in-context – connecting the dots’15 – Michael Ventura. a. FRANKENSTEIN, OR, THE MODERN PROMETHEUS (FRANKENSTEIN) Despite being published in 1818, the influence the narrative of Frankenstein has had over scientific research and perceptions (both public and professional) to date mean that to omit it from this discussion would be remiss. While arguably being one of the most well-known Gothic literary works of all time, the value of Frankenstein is not purely to be found within its capacity to entertain. The work also serves as a social commentary, with author Mary Wollstonecraft Shelley calling upon the scientific and medical theories of the time in order to present the reader with moral warnings – in particular, that science can often fail to recognise both its responsibilities, and its limitations. The story is well known. A gifted scientist named Victor Frankenstein becomes transfixed by understanding the processes of life and death, and an obsessive, secretive course of experimentation leads him to create a ‘monster’; a man whom he stitches together using stolen body parts – pieces from graveyards and charnel houses, and animal organs from the slaughterhouse. Successfully animating his creature using the power of electricity, Victor then panics – flees from the scene – and abandons his bewildered, child-like, yet powerful creation to navigate the world alone – with deadly consequences. Unleashed by Shelley upon our society, Frankenstein’s Monster has since become ‘the ultimate emblem of the uneasy borderline separating what science can do and what it should do’16 and, in an age where advances in fields such as biogenetics and DNA sequencing are making ongoing leaps and bounds, perhaps the most powerful shadow Frankenstein has cast has been over the public perceptions of the attitudes of practitioners, and the field of medical ethics.

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I saw the dull yellow eye of the creature open; it breathed hard, and a convulsive motion agitated its limbs … His limbs were in proportion, and I had selected his features as beautiful. Beautiful! Great God! His yellow skin scarcely covered the work of muscles and arteries beneath; his hair was of a lustrous black, and flowing; his teeth of a pearly whiteness; but these luxuriances only formed a more horrid contrast with his watery eyes, that seemed almost of the same colour as the dun-white sockets in which they were set, his shrivelled complexion and straight black lips … I had worked hard for nearly two years, for the sole purpose of infusing life into an inanimate body … but now that I had finished, the beauty of the dream vanished, and breathless horror and disgust filled my heart.17 The physical horror we, as the audience, see within Frankenstein’s Monster can be seen to be directly related to problems we see in the representation of ourselves as a species.18 For instance, as he witnesses the ‘birth’ of his creation, Victor realises that mankind is, essentially, chaotic, and disordered, a collection of individual qualities which – despite the best of scientific efforts – cannot be ordered or controlled. Victor’s reaction, therefore, is best explained as being one born from fear of the uncontrollable. This creates a surprisingly accurate allegory when we consider the challenges of communication, with it being seen that – while we are social animals – we also want to feel like we stand out from everyone else. This is known as our Need for Uniqueness and explains why we often experience unpleasant emotions when we perceive our treatment to be too similar to that of other people’s.19 As such, we cannot consider our professional interactions to conform to a ‘talk-by-numbers’ format, as each individual social interaction will require different things from us at different times. An understanding of both the narrative of Frankenstein, and its historical influence, highlights the ongoing public perceptions of science as inaccessible and detached, and the theme of public mistrust can be seen widely within popular entertainment; in particular the darker genres, such as horror, and science fiction. Public anxieties regarding the perceived ability of science to lose sight of its moral obligations continue to persevere, particularly within arguments such as those surrounding topics such as medical experimentation, end-of-life care, and organ donation. The narrative of Frankenstein teaches us the importance of individuality and autonomy, and also highlights the necessity for practitioners to take responsibility for their patients’ care. As stated by the General Medical Council, practitioners can do this by showing respect, and making patient care their first concern; by working within the limits of their professional ability/competence; by taking prompt action if patient safety, dignity or comfort is compromised; and by treating patients as individuals, working in partnership with them, and respecting their rights to reach informed decisions about their treatment and care. Furthermore, practitioners

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should support patients in their continuing care (by providing such information as lifestyle advice, and referrals to supportive services, etc.), in order to help improve and maintain their ongoing health.20 He had abandoned me, and in the bitterness of my heart I cursed him.21 The relationships patients formulate with their practitioners have the power to be extremely beneficial. When faced with illness, patients will often construct a sense of security from the formation of strong, positive relationships with their healthcare providers, making them feel more secure in their care, and confident in their treatment. However, while these relationships can be a positive influence, they can also encourage expectations in patients which are not necessarily shared by their clinicians. Healthcare practitioners often focus purely on treating disease, while failing to fully appreciate the power of the patient/practitioner relationship. This is problematic when we consider that patients expect much more from their healthcare providers than just technical competence. Alongside knowledge and skill, patients also expect to receive open and clear communication, security, continuity, and swift access to services and, even when their care is technically sound, individuals are often left feeling abandoned when their providers do not meet these expectations. 22 This issue becomes particularly pertinent around terminal diagnoses and palliative care, where surveys and anecdotes have suggested that patients and their family members sometimes feel abandoned by their physicians at the transition to end-of-life care, and at the point of death.23 Continuity, and closure can all be seen to contribute greatly to the mitigation of such feelings, and communication plays a key role in the maintenance of both. Continuity of care, in particular, is often pivotal in such situations, as it can be seen that establishing a strong relationship with one practitioner can facilitate difficult conversations regarding preferences for future care.24 Contrastingly, where multiple practitioners are involved – disrupting continuity – this can lead to the patient feeling isolated, with the establishment of multiple rapports taking up time which could better be spent on meaningful consultation. In such scenarios, it has been found that practitioner attention has been focused on handover for informational continuity and patient safety; with less attention potentially being continuity of patient experience.25 While efforts to achieve closure can include openly acknowledging that a visit might be the last with a patient, or calling the family or sending a condolence note after death, 26 continuity can be maintained by all practitioners involved being familiar with how an individual likes support to be given; where possible, consultations being held with the same practitioner; maintaining robust handover arrangements; and ensuring all staff involved share similar levels of skill and competency. 27

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b. TYPHOID FEVER: THERE’S SOMETHING ABOUT MARY MALLON The case of Mary Mallon (1869–1938) provides us with interesting insights in several respects. Not only is it an excellent example of how traditional health narratives often inspire negative societal attitudes towards disease carriers, who are in turn often subjected to prejudice, 28 stigma, and contempt – but it also provides valuable learning tools in respect of illness denial, and the disengaged patient. Typhoid fever (typhoid) is a systemic disease, caused by the bacterium Salmonella typhi, which is spread by the ingestion of excrement-contaminated food or fluids. Symptoms of the condition include a high fever, general aches and pains, and changes in bowel habit and, if left untreated, serious – and potentially fatal – complications can arise. While a vaccine was developed in 1911, 29 and today typhoid can be successfully treated with a short course of antibiotics, 30 historically (particularly in the nineteenth century) as people lived in overcrowded and unsanitary conditions typhoid often ran riot and was responsible for many thousands of deaths. A good historical snapshot-illustration of the spread and mortality rates of typhoid can be found within records of military deaths: Historic Typhoid Cases Reported by Armies in the Field (Approximate) Conflict Size of Army Cases of Typhoid Deaths American Civil War (1861–1865) 430,000 (American) 75,000 (17.4%) 27,000 (36%) Spanish-American War 107,000 (American) 20,000 (18.7%) 1,500 (7.5%) (1898–1898) Boer War (1899–1902) 500,000 (British) 57,000 (11.4%) 8,225 (14.4%) Source: Joseph Chapman Doane, ‘Typhoid fever’, The American Journal of Nursing, 27.9 (1927), 711–719 (p. 713) [accessed 19 March 2022].

From records such as these it can be established that, in heavily populated areas where typhoid was present, the average rate of infection was up to around 15% (1 in 7), with the average rate of death being 24.2% (1 in 4 of those infected). Typhoid particularly affected overcrowded city populations during the Industrial Revolution, where people had little or no choice but to drink from contaminated water sources, as while understanding of the water-borne transmission of typhoid was gaining traction, local authorities shied away from the additional costs and responsibilities of maintaining proper sanitation: There is a very important circular from the Local Government Board … [which] deals with the proper control of water supplies … [Typhoid is] a disease which could be easily stamped out if only proper care were exercised in regard to the prevention of contamination of water by cattle and humanity … Unfortunately, public authorities – or at least many of them – do not do

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their duty in this respect. They take things far too easily and typhoid is upon the people before they know where they are. – The Cornish Telegraph – Thursday, 13 January 1898 In New York, between 1896 and 1900, typhoid was recorded as having up to an almost 30% death rate among those infected,31 and in London typhoid was most frequently reported to have affected individuals under the age of 3032 – a key working-age demographic. However, while a diagnosis of typhoid was generally viewed openly as life-threatening, it is possible to have an asymptomatic presentation. Children, for example, can be born with typhoid which has been transmitted in utero, and as a result they are born insusceptible to the disease having received passive immunity via placental transfer from their mother’s immune system. One such child was Mary Mallon, who was born in Ireland in 1869. Mary emigrated to America at the age of 15 in the early 1880s, most likely seeking a better life due to the economic hardship of the Long Depression (1873–1896). Mary had developed considerable skill in cookery, and employment opportunities were greater in America than in Ireland;33 but where she sought advancement, she instead found infamy – as the first identified asymptomatic, healthy carrier of typhoid in the US. Career options for women during the nineteenth century were limited, and work in domestic service was a common occupation. Given her aptitude, it was not long before Mary was employed as a cook for a wealthy New York banker – and it turned out to be an occupation she enjoyed, showing a genuine passion for working with food. But, within weeks of her engagement, six of the eleven people resident in the household were suffering from typhoid. While the outbreak was initially blamed on a bad batch of shellfish, eventually suspicion fell upon Mary, as it came to light that she had previously served as a cook in as many as eight other households, seven of which had experienced outbreaks of typhoid, with several fatalities.34 Mary was tested and found to be positive, and as a result was immediately quarantined – for a period of over two years. During this time, it was suggested she undergo curative cholecystectomy (gallbladder removal aimed at removing the locus of infection), which she refused, and instead her asymptomatic infection was unsuccessfully treated with a variety of experimental preparations including Hexamethylenamin (an antiseptic), laxatives, Urotropin (a urinary tract prophylactic), and Brewer’s yeast. As none of these treatments were successful, she was eventually released – on the condition that she did not take up further work in a kitchen. 35

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But kitchen work was what Mary knew, and what she was good at, and within weeks of her release she had taken a job as a cook in a hospital, under a false name. Over a period of just three months, Mary was responsible for the infection of at least twenty-five people, two of whom died, 36 and as a result she was sent back into isolation. Mary Mallon subsequently lived in enforced confinement for a total of twenty-three years, until her death in 1938. Mary’s legacy is not one which typically provokes sympathy, and her narrative has been described as ‘a lesson about following medical advice even when you don’t really understand it’;37 however, it can be argued that this is an unfair view which presents her as a villain – an ignorant and poorly educated individual, with a lack of care and understanding for either the health or the wellbeing of those around her. The reality, though, is that she was merely a person of limited means, with limited opportunities and restricted choices, attempting to become an active and functioning member of the society she lived in. To be able to properly understand Mary’s behaviour, we must first properly understand the cultural context of her actions – and it can be seen that her options, overarchingly, were limited by the societal expectations of her time. Indeed, the Women’s Suffrage Movement (1840–1920) was started as women grew increasingly frustrated with the limits placed upon them by an oppressive, patriarchal society. For instance, women were generally considered best suited to working within the domestic sphere and, in terms of education, women who engaged too enthusiastically with intellectual pastimes – such as novel reading – were widely considered to be unfeminine and unhealthy; some medical professionals even claimed that too much education for a woman had a damaging effect upon the ovaries. Higher education or professional work was considered out of the question.38 There were also restrictions placed upon women’s rights to vote, initiate a divorce, or own property and, indeed, a woman was widely considered to be the ‘property’ of her husband. In the UK, Martin’s Act (1822) prohibited cruelty to cattle and horses and was extended in 1835 to cover all domesticated animals, including dogs and cats;39 however, no such equivalent law existed for the protection of women. Husbands were expected to regulate their wives’ public and private behaviour, and ‘scolds,’ ‘nags,’ and ‘outspoken women’ could be physically or emotionally disciplined without comment.40 The law in England was designed to protect marriage, not wives, and, prior to the Divorce Act (1857), divorce was contingent upon acts of both adultery and assault on the part of the husband.41 As society progressed, women were fighting to keep up. Horses were doing ok, though! In a world where not only education but also employment options were severely limited, Mary’s choices, then, were domestic service, child-rearing, or prostitution. For a short time, she did take employment as a laundry woman, and then a cleaner – but these jobs paid only a fraction of a cook’s wage and, medically, her presence in the community was not causing any issues.42 Surely, then, from Mary’s perspective, the doctors had been wrong. As she was presented with no day-to-day evidence – or

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symptoms – to support the condition so many medical professionals had ascribed to her, we must ask ourselves if it is really any wonder she returned to cooking, falling back on the skills she knew? Mary was also not an isolated carrier. Indeed, thousands of cases of typhoid each year were attributed to contaminated food and water supplies, and it is now estimated that somewhere between 1–6% of people infected with typhoid become chronic, asymptomatic carriers.43 Furthermore, while many more asymptomatic cases were identified during Mary’s lifetime, none of them were quarantined or stigmatised in the same way, and it was only Mary who was singled out as a callous poisoner.44 Indeed, many men employed as food handlers were identified as carriers, and were subsequently given alternatives to isolation, including training in alternative employment.45 There was never any effort by the Board authority to do anything for me excepting to … keep me a prisoner without being sick nor needing medical treatment … I have in fact been a peep show for everybody.46 – Mary Mallon The most astonishing factor in Mary’s case, however, is that nobody ever attempted to explain to her the significance or implications of what it meant to be a disease ‘carrier.’47 As can be assumed by her return to the kitchen, due to the asymptomatic nature of Mary’s presentation she did not believe, or understand, how she was a carrier at all. Without having symptoms, in Mary’s eyes she was perfectly well, and perfectly able to work. Kitchen work at that time was hard, physical work, performed in small, unventilated spaces and, like the majority of cooks at that time, Mary carried out most of her work with her bare hands.48 A basic understanding of disease transmission, or even improved hygiene, could have made a tremendous difference to Mary’s behaviour and working life, and subsequently could have made a huge impact on public health. Instead, where Mary could have been educated and supported, she was stigmatised and isolated, and where she only ever wanted to become a good cook, she was instead turned into a figure of public ridicule, and a laboratory curiosity. I have never had typhoid in my life, and have always been healthy. Why should I be banished like a leper and compelled to live in solitary confinement with only a dog for company? It is true three servants in a family where I was employed two years ago had typhoid, but what of it? It was the drinking water, not me, that caused the trouble … I am an innocent human being. I have committed no crime, and I am treated like an outcast – a criminal. It is unjust, outrageous, uncivilised.49 – Mary Mallon Indeed, to this day, Mary Mallon remains better known by the derogatory nickname ‘Typhoid Mary,’ and her life has been diminished to the value she held to the medical profession, rather than any consideration being taken of her as an individual with

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her own agency. While the narrative of ‘Typhoid Mary’ is now used widely for the teaching of such topics as microbiology and hygiene, it seems incredible nobody took the time to speak with the woman herself and help her understand the meaning and severity of her carrier status. To make matters worse, the sobriquet ‘Typhoid Mary’ was created by the American Medical Association itself, and the press and public responded to it with fascination almost immediately. Mallon herself was deeply resentful of the phrase, and no wonder – in a short time, she was demonised by an entire population who knew nothing about her. Parents would use her story as an example, to improve the behaviour of their children, and a common playground chant of ‘Mary, Mary, what do you carry?’ became popularised around the playgrounds of New York.50 Understanding the life and experiences of Mary Mallon can assist us in better understanding individual reactions to chronic illness. Paediatric neurologist Harry S. Abram identified several ways in which the chronically ill may attempt to rationalise their illness, including the strategies of denial, and projection. With denial, a patient avoids engaging with their illness, and handles anxiety by not allowing themselves to think about their situation. With projection the patient blames others, or the environment, for their illness.51 While denial may help reduce stress levels, and minimise anxiety, it may also prevent a patient from seeking medical advice – at which point it becomes a detrimental strategy, with potentially life-threatening consequences. Projection also removes from the patient the responsibility of their illness,52 and they may be difficult to engage productively in ongoing health strategies as a result. When thinking about the disengaged patient, it is useful to view their situation from their perspective. Imagine, for a moment, that Mary Mallon is a modern-day patient. Where her contemporaries dealt with the complexities of her case by use of enforced isolation, we are able to view Mary holistically, as opposed to pathologically. Thus, we can be better aware of her personal, social, and educational background, and the following considerations could then be taken into account to better engage her with her care – which could ultimately provide a more satisfactory outcome on both an individual and societal level: Consideration Right to Confidentiality

Potential Actions Mary’s confidentiality should be maintained at all times, to not only allow her to feel safe within her medical experience, but also to ensure that she does not face stigma outside of a medical environment. Patient trust in the maintenance of confidentiality is vital. In feeling confident that their personal information and circumstances will be kept confidential, patients are provided with an environment in which they feel safe, and able to express themselves, their worries, fears, and treatment preferences.

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Respect for Autonomy

If confidentiality is not maintained, individuals may become guarded, and reluctant to share information about themselves, their symptoms, and their treatment preferences. As such, they may disengage from interactions with their healthcare providers. Mary should be recognised at all times as an autonomous, valuable individual. Respect for autonomy is usually associated with allowing or enabling patients to make their own decisions about which healthcare interventions they will or will not receive,53 and to this end disparaging nicknames or derogatory language will cause Mary to disengage from healthcare provision.

Level of Health Literacy

It is important that Mary’s conversations with her healthcare practitioners are free of judgement and provide her with a safe space in which to discuss, query, and come to terms with her illness at a rate suitable for her. The WHO defines health literacy as being ‘the personal characteristics and social resources needed for individuals and communities to access, understand, appraise and use information and services to make decisions about health,’ and low levels of health literacy have been seen to significantly impact upon an individual’s ability to manage long-term conditions.54 By taking into consideration Mary’s limited educational background, practitioners involved in her care are able to identify meaningful ways in which to communicate her asymptomatic illness to her. As well as engaging Mary in conversation, the use of graphics or illustration could be utilised where her literacy is poor, and the use of appropriate language (for instance avoiding jargon) would enable her to better process information about her condition.

Illness Denial

Mary could also benefit from a multidisciplinary team approach, with the involvement of services such as occupational therapy, and psychology, being able to support Mary through changes in lifestyle, and positive habit forming. Mary has responded to her diagnosis with denial – ‘I have never had typhoid in my life.’ It is important that, when discussing her diagnosis, Mary feels respected as an individual, and free from judgement and condescension. Denial of illness can be seen to serve important adaptive or coping functions and can therefore be difficult to challenge. It is important that Mary is allowed time to process distressing information about her condition at a rate that she finds manageable.55 While Mary’s denial is maladaptive, it is important to recognise that she is utilising it as a defence mechanism, as her diagnosis affects her way of life, and career prospects.

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Economic Considerations

Helpful strategies in helping Mary overcome her denial include skills of active listening, avoidance of confrontation, and ensuring that adequate information has been provided in appropriate and accessible ways. With this latter point in mind, it is important that the practitioner makes themselves available to Mary at a later time, should she not wish to immediately engage. Mary should feel supported at all times, and to this end it may also be helpful to offer to speak with members of her support network (friends and family).56 Mary’s diagnosis will significantly affect her working life, and she may now struggle to meet her financial needs. A multidisciplinary approach should once again be optimised, with the role of social work in the management of chronic illness potentially being of benefit. Mary could also benefit from financial assistance, and a specialist/community nursing team may be able to offer assistance and advice in this regard.

Denial of Treatment

Referral to community services could also be appropriate, such as careers and skills training services, which have the potential to help her find alternative, meaningful employment. Assuming all possible steps are taken to ensure Mary is fully aware of her condition, the treatment options available to her, and the limitations it places upon her day-to-day life; should she still refuse treatment, as her condition poses a risk to public health the situation becomes a legal matter. Mary may be examined to determine her mental capacity and, should this be found to be impaired, she may be subject to detention under mental health legislation. If, however, Mary is deemed to have capacity to make decisions about her care and treatment, she may fall subject to public health law. In either circumstance, Mary may be subject to a form of compulsory treatment order. It should be noted that, where they exist and are of relevance, compulsory treatment orders should restrict individual liberty only to the extent necessary to most effectively reduce risks to individual/public health.57

This is not merely an historical example, but a recurring issue. Mary Mallon’s story provides us with better insight into incidents such as that of 31-year-old lawyer Andrew Speaker, who in 2007 tested positive for multidrug-resistant tuberculosis. Despite his diagnosis, Speaker embarked on two transatlantic flights, as well as several European flights, sparking an international panic. 58 Speaker admitted flying with full knowledge of his diagnosis; however, he maintained that he was not specifically told he could not travel – his doctors only ‘preferred’ him not to do so. Once he was expressly forbidden from taking a further flight, Speaker panicked and fled from authorities59 – ignoring instructions to turn himself in to Italian health officials, be isolated, and receive treatment there for an indefinite time. Speaker later claimed that he felt abandoned by US officials, and that he had feared for his life.60

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While Speaker was ultimately not responsible for spreading infection, it does seem that the cautious nature of his doctors may have led to the initial confusion on his part about his ability to travel. In Speaker’s case, as an educated man working in the legal field, the implied nature of his advice not to travel was inappropriate; when he asked, ‘can I fly?’ the answer ‘we would prefer you not to’ did not equate, especially to a legally trained mind, to a firm negative. Illness denial also played a role in Speaker’s decision to travel, as he felt subjectively well, and therefore did not consider himself to be contagious. It can be argued that the failure of Speaker’s practitioners to effectively communicate his condition to him led to him being the first patient in America to be placed on an involuntary isolation order in over 40 years, and also led to him being victimised by the media: being labelled a terrorist, and with members of the general public calling for him to be ‘eradicated’.61 It can therefore also be argued that by ensuring Speaker felt supported, and appropriately communicating to him the implications of his diagnosis, his practitioners could have better enabled him to engage with the severity of his situation. This may have meant that Speaker accepted voluntary treatment, as opposed to enforced isolation. Furthermore, had his identity been better protected by health officials, it would have removed the threat of violence toward him from members of the public. On both professional and personal levels, it can be frustrating when patients disengage with health provision; however, where factors such as understanding have been addressed, it is important to consider other factors which may influence decision making. Poor health can render patients with a sense of powerlessness, and they may react to distressing information by attempting to control the situation from their own perspective. Life can be viewed as a struggle to find order where there is predominantly chaos, and it has been found that merely the existence, or perception, of choice – however limited – can vastly improve performance in a variety of situations.62 Provided the decisions are informed, and made with capacity, it is important to remember that a patient may not always make the choice you would recommend, but this should not be taken as a direct reflection on the effectiveness of your practice. The elements of power, autonomy, and choice are essential in the way we perceive our sense of self and should be promoted as such within all patients during healthcare interactions. The narratives of Mary Mallon and Andrew Speaker present us with moral questions, such as how we protect public health without victimising the individual, and their examples serve as important reminders of the importance of education, understanding, and respect for confidentiality and autonomy. Their cases are perfect examples of how the healthcare system can provoke societal attitudes toward disease carriers which are often associated with prejudice,63 and an appreciation for the experience of both Mallon and Speaker can help us better consider issues with which we continue to struggle today, for instance in terms of illness denial, maintenance of

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patient confidentiality, and victimisation by the media – as well as public attitudes toward issues such as gender bias, and infectious diseases such as HIV/AIDS, as well as the Covid-19 crisis. c. THE AIDS CRISIS: ‘ART LIVES ON FOREVER’ Human immunodeficiency virus (HIV) is a disease which progressively renders those infected immunodeficient. Without treatment, the condition of acquired immunodeficiency syndrome (AIDS) can develop, which is defined by the development of some cancers, infections, or other, severe, long-term clinical manifestations which directly shorten the natural lifespan of those affected. HIV infection is spread by the exchange of bodily fluids such as blood/needle-sharing, breast milk, semen, and vaginal secretions (but not saliva, sweat, or tears). Transmission in utero is also possible; however, individuals cannot become infected through ordinary day-to-day contact such as hugging, shaking hands, or sharing personal objects, food, or water.64 The conditions of HIV/AIDS first came to public attention in the early 1980s, and the resulting AIDS crisis of the late 1980s/early 1990s shines a light on the contemporary (and all too often, persistently insidious) stigma of homosexuality, and drug addiction, providing us with valuable lessons in terms of both moral and social justice, and the importance of challenging negative stereotypes. The use of art, produced by both victims and their supporters, throughout the AIDS crisis can provide us with invaluable insights which are able to directly challenge such negative stereotypes, and – as stated earlier – directly promote empathy, as they improve our understanding of other people’s lived experience. Furthermore, art, be it visual/performative, written word, musical, or otherwise, has the power to return individuality and identity to those who have otherwise become categorised by their diagnoses. The use of narrative by the medical profession throughout the HIV/AIDS crisis was, unquestionably, problematic. Much as the use of the nickname ‘Typhoid Mary’ victimised an individual, as initial reports of HIV/AIDS utilised labels such as ‘Gay Men’s Pneumonia’ (in reference to the gastrointestinal cancer Kaposi’s sarcoma), and ‘Gay-related immunodeficiency’ (GRID), the implication that the disease only affected homosexual men victimised a whole community and remained a widespread misconception for many years. Further misconceptions, such as the manner of transmission of HIV/AIDS, were also perpetuated despite growing awareness of the condition, and there was a widespread reluctance to acknowledge the epidemic status of the disease. Indeed, in the US, the Reagan administration prevented the health system from responding appropriately to what very early on was known to be an extremely dangerous transmissible virus,65 and in the UK the government under Margaret Thatcher attempted to limit public information campaigns, seeing the descriptions of explicit sexual behaviours, ironically, as being ‘damaging’ to the teenage population of the time.66 Art, it can be seen, played a pivotal role in challenging both this perpetuated stigma, and misconception.

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Part of the issue when considering large-scale illness, is that the human brain is hardwired to subitise – or recognise quantity without counting. It has been argued that this is due to a modular structure of brain composition, and that the brain contains a ‘number module;’ a highly specialised set of neural circuits which enable subitising, allowing us to categorise small collections of items in terms of their quantity. For instance, when we see a black cat, our brains are able to establish both that it is a single cat, and that it is black; and so on when there are two, three, or four cats of whatever colour in the group. ‘Just as we see [colours] automatically and involuntarily and without being taught the concept of [colour], so we immediately [recognise] and distinguish small numerosities without being taught the meaning of number.’67 While the modular structure of the brain is contested by fMRI studies,68 our ability to subitise, and innately quantify small numbers of objects, does make sense in that it serves a distinct evolutionary purpose – allowing us to distinguish numbers of predators, rivals, or prey, for example. The problem comes when we are presented with bigger numbers. In terms of modular structure, we have no evolutionary need to innately recognise or visualise quantities such as 1,000, 10,000, or even 100,000. We, of course, learn how to quantify such amounts, but in terms of concrete thinking, these types of numbers often become unimaginable, abstract concepts. To assist, we relate these abstract concepts to more tangible examples. YouTuber and financier Humphrey Yang, for instance, created a video in January 2021 which visualised Elon Musk’s $195 billion net worth with grains of rice, where each grain of rice represented $100,000 – utilising 93 lb of rice in total.69 UNAIDS reports that, as of 2022, 36.3 million (27.2–47.8 million) people have died from AIDS-related illnesses since the start of the epidemic70 – an elephantine figure which, without tangible representation, our brains are simply unable to usefully quantify. As such, the people affected run the risk of losing their individuality, as we quantify the number of diagnoses and deaths in terms of numbers on a page – intangible, abstract concepts. The AIDS crisis, and the public response to it, had a significant impact on the lives of the people and communities affected by both the virus and the perception of stigma, and it can be seen that a profound need existed, particularly in the gay community, to openly express feelings, fears, and beliefs around the topic of HIV/ AIDS.71 To this end, the AIDS crisis was responsible for a tremendous outpouring of artistic expression – aimed at not only documenting the human experience, but also at returning individuality to people who had, irremissibly, become viewed as relatively meaningless statistics.72 By paying attention to the art of the AIDS endemic, we are better able to expand our world view, develop our skills of empathy and compassion, and gain a greater appreciation for not only individual experiences but also broader social beliefs, attitudes, and fears. The following examples – featuring works of visual art,

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music, and film – highlight the ways in which such pieces can connect the viewer emotionally with not only artists but also the subjects of their artwork and, in doing so, increase our levels of empathy. By becoming more familiar with different voices, cultural manners of expression, and especially the fears and anxieties which may be experienced by individuals in circumstances different to their own, a medical practitioner is able to be fairer in their practice – better appreciating the lives of the people they treat, improving understanding, and mitigating discrimination against those whose culture or values do not tally with their own. i. The NAMES Project AIDS Memorial Quilt The AIDS epidemic and the appalling number of lives taken by it was all too often portrayed in the media as being about a faceless mass of unknown people. In truth, of course, it was an all too large patchwork of individual stories; of real people with names and lives, with loved ones and families and careers and talents never quite allowed to reach fruition.73 – Jay Rayner The NAMES Project AIDS Memorial Quilt, as of 2020, is the largest ongoing folkart project in the world.74 The quilt is composed of patches, the size of a standard burial plot, designed by the friends and family of AIDS victims – or, in the case of high-profile individuals such as Elizabeth Glaser, Freddie Mercury, and Liberace, fans and admirers – and is aimed to not only commemorate death but also celebrate life. Nominated for a Nobel Peace Prize in 1989, the project was devised by San Francisco gay rights activist Cleve Jones, in 1985, and can now be added to virtually. As of 2021, there are 50,000 panels, which are embroidered with over 110,000 names, and the piece has proven itself not only an incredibly effective and emotive tribute, but also a powerful tool in relating the statistical to the human. The quilt is both searchable and viewable online via the National AIDS Memorial website,75 and examples of the work to be found within it range from simple, markerpen or graffiti-style monikers, to elaborately sewn, highly decorated patchworks. One of the panels, dedicated to actor and horror-icon Anthony Perkins (1932–1992), for example, displays a shower curtain and a bloodied knife – indicating his starring role in the Psycho franchise; while another, dedicated to model Gia Carangi (1960–1986), consists of simple black and white caricature illustration on a plain white background. Whatever the level of craftsmanship, the viewing of the panels is an incredibly emotive experience, which brings home the true cost of human life – displaying talent, individuality, love, admiration, and pride in the existence of people who were often, at the time of their deaths, viewed as members of undesirable populations. By viewing the quilt, we are able to see tangible examples of the true human cost of the AIDS crisis, which allows us to associate the statistical to the human.

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It has been argued that visual art, such as paintings, sculpture, mosaics, drawings, and patterns, are merely static, two-dimensional images, and as such are associated with limited narrative means. Correspondingly, their ability to engage sufficiently with the viewer’s associative-memory system (which enable a person to cognitively link seemingly unrelated items) is also limited, and so such works do not lead to identification and augmentation of empathy, or induce fundamental human emotion.76 However, this is a view which would be largely contested by artists themselves, or those who engage with art on a regular basis. For instance, Katrina Armitage, Curriculum Leader of Art and Photography (secondary school), argues that, historically, the quilt as a medium is an incredibly personal and emotive artform, able to provide both meaning and narrative to the lives of people otherwise entirely disconnected to the viewer: Quilt making has a long tradition in many cultures as a way of bonding people together, not only over the physical act of crafting, but also across time and in their ancestry, passing down skills and stories over generations. Quilts have the practical significance of providing something warm, comforting, and beautiful, as well as embodying elements of community, togetherness, and yet still finding room for individuality. With these artistic and historical contexts in mind, it becomes possible to understand the deeper meaning behind the quilt as a collective, commemorative experience, and Katrina explains the effect it has upon the viewer as being a powerful expression of solidarity, emotion, and individuality: From a distance, it is a pixelated rainbow of colour, and presents a desire to look closer, to separate the pixels and define the colours more clearly. We are invited to acknowledge the history, names, and colours of the people who have passed away. Everyone is given their space – capturing feelings, human experience, and love – and this opposes their reduction to a meaningless statistic. We can see the names of people embroidered next to their favourite colours, sports, hobbies, where they lived, and it gives us meaning; we recognise a person in the vast crowd of the quilt. The quilt is an accessible piece of art for all to understand and appreciate aesthetically, but also to contribute to and express love for someone lost, further enhancing this idea of community and folk-art. Love, emotion, and memory is tangible in this piece, with every colour, every patch, connected, collectively memorialised as a legacy of the community we have lost. It has been found that, regardless of the medium chosen, people will benefit overall from increased experience with visual art. As technology advances, our visual stimuli often have the potential to become overwhelming, with digital media such as computer games, television, advertising, and film decreasing our sensitivity to distressing images. Art which focuses on emotion, therefore, not only has the ability to awaken us to new perspectives, but also keep us connected to our humanity.77

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As well as the NAMES Project AIDS Memorial Quilt, there is also the UK AIDS Memorial Quilt, which consists of forty-eight panels, representing approximately 384 people from the UK. In addition to these panels, photographs, letters, and personal documents have also been collated, which tell the stories of those being commemorated.78 The panels are also viewable online, via the UK AIDS Memorial Quilt website.79 ii. John Corigliano’s Symphony No. 1 for Orchestra (1988) Inspired by his viewing of the NAMES Project AIDS Memorial Quilt, John Corigliano’s 40-minute orchestral composition aims to memorialise three of his friends, as well as wider individuals, affected by – or lost to – AIDS. Writing in the programme note for the premier, Corigliano stated that: During the past decade I have lost many friends and colleagues to the AIDS epidemic, and the cumulative effect of those losses has, naturally, deeply affected me. My First Symphony was generated by feelings of loss, anger, and frustration … [I wanted] to [memorialise] in music those I have lost, and reflect on those I am losing. 80 The piece itself is constructed of four movements (parts): the first, Apologue: Of Rage and Remembrance, memorialises one of Corigliano’s close friends; the second, Tarantella, was written in memory of a music executive and amateur pianist; the third, Chaconne: Giulio’s Song, was written in memory of a university friend. The final movement, Epilogue, recalls all three individuals represented within the overall piece.81 Classical musician and musicologist Michael Mitchell explains why the magnitude of emotion expressed within Symphony No. 1 is evident immediately: [In the first movement], dramatic accelerations and deceleration instil a sense of pain, rage, and uncontrolled emotion. Forceful gestures interspersed with heartrending, lyrical melodies take full advantage of the emotional range of the movement. The upbeat, folk-like character of the Tarantella is interrupted by bold gestures, and Chaconne: Giulio’s Song sees lush melodic material swapped between the various instrumental groups. Tubular bells herald a twisted, funeral march section, which uses only very small fragments of melody, which relentlessly repeat until they lose their inherent character, and function only as a gesture right at the end of the movement. The epilogue is calm throughout, and we are left with the sense of remembrance after having moved through rage and pain. Music has its roots settled deep in human evolution and, in our distant past, the production of music may have held certain importance in terms of our survival. Social

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music making/enjoyment enables individuals and societies to bond, set rhythm for communal tasks, and can either reduce inter-group conflict, or cement social ties for defensive cooperation. Indeed, there is a particularly social element instinctive within musical engagement which remains relevant today, as we enjoy in groups activities such as bands and concerts, carol singing, and karaoke nights. The suggestion, therefore, is that music serves distinct social and developmental purposes – conferring social cohesiveness and forging empathetic connections between members of a group.82 It seems only natural, then, that music, and musical narrative, have the ability to induce a wide range of powerful emotional responses from those who listen – such as grief and remembrance, sadness, tranquillity, contentedness, joy, euphoria, and nostalgia; however, while other art forms have the same ability, the manner of communication found within music is unique. The communication of music is rooted deep within our primal emotions, rather than within our logical thought, and research has shown that what we feel on an individual level when listening to music is not dissimilar to the emotions being experienced by other people listening to the same piece. In short, music has the ability to universally manipulate our mood to a far greater extent than that which can be achieved by words alone.83 Furthermore, music, in comparison to other art forms, has the additional dynamic of underlying emotional honesty. Musician and composer Adam Devlin, best known as guitarist and songwriter with The Bluetones and Thee Cee Cees, describes the process of musical composition as being one of raw, unconcealable sentiment: As someone who writes both music and lyrics, it is the music, by its nature, that cannot help but be the more honest expression. Words and lyrics are malleable. They can be deceptive, they can be played with, and projected. If a lyric is uncomfortable for a songwriter, it can be written in the third person, or from another person’s point of view, and millions of lyrics have been. You can’t do that with music, it can’t use those devices. How it sounds is inescapably how you feel. This emotional honesty is also reflected in what a person chooses to listen to. A grieving friend might tell you they are ‘fine,’ for instance, and may even outwardly engage in happy or light-hearted literature, or film – but their solitary musical choices will rarely reflect such fabrication. A skilled musician is able to manifest and relay their feelings through their composition, and many albums have been written about emotional experience – for example, that of grief: Neil Young’s Tonight’s the Night (1975), Nick Cave & the Bad Seeds’ Skeleton Tree (2016), and Joni Mitchell’s Mingus (1978) – amongst myriad others. However, this is certainly not to say that a grieving individual will seek out sad music in order to feel ‘more sad.’ A 2012 study by Vuoskoski et al. found that, while sadness was the most significant emotion experienced in response to sad music, other emotions such as nostalgia, peacefulness, and wonder were also expressed. Furthermore, the sensation of empathy was also

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associated with the experience, which suggests that empathetic engagement plays a pivotal role in the personal enjoyment of sad music84 – ‘this has articulated how I am feeling – I am not alone in my experience.’ Conversely, then, by engaging with musical narrative we are naturally also able to engage our perception of empathy and gain an appreciation for emotions we have not ourselves experienced, being party to the innermost thoughts, emotions, and, often, vulnerabilities of those who composed it. Australian recording artist and songwriter Carus Thompson describes his writing style as being one heavily reliant on the description of emotion, and the human experience: Many of the songs I write are in the narrative form, and they seek to empathetically document socio-political-historical events. For me, songs play an important role in documenting events. Songwriters are able to give voice to marginalised peoples, which may get lost as part of mainstream documentary forms. With narrative song writing, if we can create a realness or ‘truth’ within the song, the listener can connect empathetically. I believe that when an event is explored and documented through a subject’s unique position, it is possible to disrupt the dominant discourse. Using lyrical and musical empathy-building techniques you can reverse the mainstream tendency to oversimplify, and turn humans into things, rather than people. Even if it is momentary, the listener feels the humanness of those involved, and like a magician’s trick, once the spell of the dominant discourse is broken, empathy and perhaps a different view is made possible. Music, and musical narratives, can provide universally accessible means to witness alternative viewpoints, which directly challenge stereotypes. As a result, engagement with music therefore promotes empathy, and improves individual understanding of other peoples’ lived experience; promoting senses of power, community, and the acceptance of alternative viewpoints. iii. Act to Make a Difference: AIDS in Drama Drama and the performing arts, such as plays, television, and radio performances, can have a powerful impact on human emotion and, within the performing arts, the concept of emotional response, and the differentiation between sympathy and empathy, is of fundamental concern. Sympathy, for example, is reliant upon the audience remaining self-conscious and emotionally cognisant, and as such remaining ‘outside’ of the action being portrayed; whereas empathy is reliant upon an unself-conscious viewer, who becomes an emotionally absorbed participant – in essence, a person who loses themself in the action or story being portrayed. The underlying notion is that people who experience

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sympathy remain emotionally conscious of their personal lives and understand but do not directly relate themselves to another individual’s lived experience, whereas people who experience empathy completely forget their own personal existence, and thereby intimately share the emotions of the characters they are presented with.85 Empathy as a dramatic technique, therefore, is incredibly powerful. This differentiation between sympathy and empathy can be clearly illustrated in literary examples, such as the characters of Jane Eyre and Bertha Antoinetta Mason in Charlotte Brontë’s 1847 novel Jane Eyre. Jane Eyre is the eponymous story of a young woman who, throughout her life, experiences abandonment, hardship, and oppression. Throughout her narrative, we witness her overcome emotional abuse, neglect, and financial hardship, and also experience her triumphs as she falls in love with, and becomes engaged to, her employer – the wealthy and impassioned Edward Rochester. On their wedding day, however, the audience is introduced dramatically to the insane Bertha – already Mrs Rochester – who is imprisoned in the attic due to her violent, unpredictable nature. As Jane’s heartbreak is revealed, we feel empathy for her, as throughout her journey we have followed her trials and sufferings and feel her pain as her hopes for a happy ending are pulled cruelly from under her feet. But the experience of Bertha is pushed to the sideline. For Bertha, the reader feels sympathy – for a woman restrained in squalor against her will, with no hopes for recovery from her mental illness. But we are given no insight into Bertha’s own thoughts or feelings, and so while we share the emotions of Jane, being placed almost directly into her lived experience, we view her rival only with pity. Engaging with drama and the performing arts can directly heighten our skill of empathy, as such narratives manipulate our feelings. As we have already discussed, human beings are social creatures, and our ability to communicate to such a great extent has played a pivotal role in our survival as a species. So, too, has our development of empathy, as it can be seen that our success overall depends on the effectiveness of our society. Feeling what others feel – empathising – directly contributes to this success.86 Narratives of HIV/AIDS within the performing arts have been incredibly effective in terms of the proportion of empathetic response – be they in the form of theatre, film, or television. iv. Rent, Jonathan Larson (1994) It has been found that engagement with theatrical production, and the professional theatrical processes of storytelling (including such techniques as reminiscence, and playfulness) can assist individuals in understanding their own personal health situations. Furthermore, by comparing their experiences to that of others, individuals

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are better able to relate to one another, and theatrical interactions have the ability to challenge and alter attitudes about other people, increasing levels of both tolerance and diversity. Group interactions and skills learned in professionally led drama programs can produce a broad range of transferable abilities which promote overall wellbeing and,87 by engaging in the viewing of theatrical production, the audience is provided with an immersive experience, which can provide insights into varying themes, emotions, and experiences. Theatre, then, has an incredible ability to promote empathy between and amongst individuals and communities, and theatrical production can have a wide-reaching impact on perceptions of both illness and wellness. Playwright Thom Sellwood has been involved with the theatre for upwards of two decades, working not only within stage production marketing, but also writing and directing numerous musicals throughout his career to date. Most notably, he joyously claims to have seen ‘just about every musical ever written,’ and he describes the immersive experience of theatre as one of heightened empathetic reaction: Live theatre, at its best, creates an unparalleled relationship between text and audience. The text is brought to life for that one audience. That connection allows the audience to lean into the world and feel the emotions on stage with the actors and the characters. Watching someone fight for their life a few feet away allows the audience to invest more keenly in the action and make themselves part of it, in their lived experience. Given his extensive theatrical experience, and with this increased empathetic communication in mind, Thom is a firm advocate for the power of theatre, highlighting that it has provided myriad responses to the AIDS crisis which directly highlight and convey the experiences and emotions of those affected: Tony Kushner’s 1991 Angels in America, for instance, is a seven-hour epic, set during the height of the crisis, which seeks to examine homosexuality and the crisis within the context of the increasingly commercial 1980s America, utilising supernatural elements, and a wildly complex plot. In contrast, the late Jonathan Larson’s musical Rent tells the story of a group of impoverished New York artists as they deal with the reality of living with AIDS. Whilst the show does look at general themes of homelessness, addiction, and gentrification, these are more the backdrop than the core of the performance. Instead, the show places the emphasis on the emotions felt by those with the disease, as well as their loved ones, using its musical score to understand the human experience of the HIV/AIDS epidemic. For example, one song, entitled ‘Will I?’ is presented to the audience in the setting of an AIDS support group. The simple, stark lyrics of the song are repeated by the company singing in a round. The focus here is on the fear that any patient would

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have, knowing that they are destined to gradually become more unwell, with an early death all but certain for them. The show goes much deeper, though, looking at more incongruous emotions. The song Out Tonight, sung by a 19-year-old woman living with AIDS, is an exuberant celebration of living life to the full and enjoying oneself when there isn’t much time left. It leads into a powerful number entitled No Day but Today, in which the cast persuade a character, who has already lost his girlfriend to the disease, to leave his apartment and embrace life. This song provides an optimistic mantra which galvanises the characters, helping them to accept that they must make the most of the time they have, with the people they care about. The show also examines the attitudes and emotions of those not directly affected by AIDS, with one character expressing his sadness that he is destined to be ‘the one of us to survive,’ as a result keeping the people around him at arm’s length – in turn allowing him to disassociate from the terrible experiences he is watching his friends go through. Rent is able to connect with an audience on a human level and gives a voice to what many people going through a personal health crisis may appreciate. As Thom states – ‘the fact that Larson died the night before its first performance, from an undiagnosed aortic aneurysm, gives more voice to the message: no time like the present.’ v. Dallas Buyers Club, Truth Entertainment Voltage Pictures (2013) When viewing a film, in order for us to understand and internalise a situation, it can be seen that it is not necessary for us to identify completely, or even at all, with the protagonist. Indeed, the viewer only needs to have a sense of why the protagonist’s response is appropriate to their situation. If we consider this in respect of – for example – horror films, we do this most easily when supernatural entities appear; we understand why, for instance, a character might run from a haunted house. Especially in circumstances where we share the same culture as the protagonist, we can easily establish why the characters we are watching find supernatural or horrible villains unnatural.88 In respect of illness in film, the same is true. We do not need to identify entirely with the protagonist to be able to understand and internalise their responses to diagnosis and illness – only that illness and disease is a universal threat. Character reactions, therefore, often become the most powerful empathetic element in film. Directed by Jean-Marc Vallée, Dallas Buyers Club is a biographical account of the life of electrician, Ronald (Ron) Dickson Woodroof (1950–1992), following his diagnosis with AIDS. The film documents his remarkable response, as he is initially given 30 days to live following his diagnosis but refuses to accept his fate. The audience watches as Ron seeks out alternative, non-approved medical treatments outwith America, imports them into the state of Texas and sets up a ‘buyers’ club’ – an association which provides much sought-after medical treatment to individuals who otherwise would have struggled to obtain a supply.

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While the film was produced long after the height of the AIDS crisis and does exaggerate many elements – for example, Woodroof’s homophobia – it remains a powerful piece, which provides insight into a stigmatised community from the perspective of an outsider. Throughout the film, ‘[Woodroof] makes common cause with the gay [men] he used to hate, and … becomes an inspirational figure, breaking down the ignorance and general homophobia thereabouts – his own included’89 – a journey which is able to directly challenge any negative stereotypes which may remain within members of the audience. Much like both literature and theatrical production, within film there is frequently a differentiation between the emotions of sympathy and empathy, and within Dallas Buyers Club, this is best highlighted between the characters of Ron, and the character of Rayon, with whom he develops a friendship whilst in hospital. In the story of Woodroof’s life, Rayon is an entirely fictionalised creation – introduced by the scriptwriters as a means of providing the depicted Ron with a direct, dramatic challenge to his prejudices while facing disease.90 Throughout the film, we feel empathy for Ron, as he struggles to come to terms with not only his diagnosis, but also the challenges to his long-held beliefs surrounding the gay community of the time; while for Rayon we feel sympathy, as they are presented almost as ‘light relief’ – a portrayal which has drawn notable criticism: ‘[Rayon is] a ­sad-sack, clothes-obsessed, constantly flirting transgender drug addict prostitute … an exaggerated, trivialized version of how men who pretend to be women … behave … the only figure played consistently for comic relief.’91 While this problematic representation can, naturally, give weight to many very valid arguments surrounding the stigma and misunderstanding of transgenderism, it can also be argued that it is precisely this ‘light relief’ element to Rayon’s character that gives them the most powerful line in the film: ‘I don’t wanna die.’92 While the film, to this point, has focused on the experiences of Ron, the dramatic shift in perspective to the innermost thoughts, feelings, and experiences of Rayon comes as a powerful shock. The audience, used to Rayon being the irresponsible, silly counterbalance to the serious, enterprising Ron, are taken aback as they collapse under the weight of their diagnosis, and the terror of their impending death. The predominant feeling immediately becomes one of empathy, as the viewer is transported into the life of Rayon – feeling for themselves what emotions the knowledge of a terminal diagnosis must evoke, such as denial, injustice, anger – and fear. As we have now established, when viewing fictional characters on film we don’t need to identify with every aspect of their personality – the most important element is that we understand their motivations. Engagement with film, particularly where the topics covered are controversial, or highly emotive, can provide us with outlooks, experiences, and world views we may not otherwise ever be party to, and as a direct result challenges stereotypes, and promote the development of empathy.

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d. WRITE YOUR OWN NARRATIVE JOURNEY If you’re reading this book, it can safely be established that you want to be involved in medicine and healthcare provision. This is the end point – the ‘dot’ – but we are missing the context. Complete the questions below to document influential factors along your own journey into medicine, and then compare it to someone else’s. In what ways do your stories differ, converge, and what do you learn about yourself and your colleagues in the process of this discussion? Who do you think of as a role model, and how have you followed their lead?

Did you ever disregard advice, for example in choosing academic subjects? If so, why?

Think about a time you succeeded in achieving a goal. What made you successful? How would your life be different had you not achieved this goal?

Think about a time you did not succeed in achieving a goal. Why not? Do you appreciate the experience? Why/why not?

NOTES 1 National Geographic Society, Storytelling (2022) [accessed 29 May 2022] 2 National Geographic Society, Storytelling 3 Lara C. Stache, ‘Fisher narrative paradigm’, The SAGE encyclopedia of communication research methods (2018) [accessed 29 May 2022] 4 Rita Charon, ‘Narrative medicine a model for empathy, reflection, profession, and trust’, JAMA, 286.15 (2001), 1897–1902 [accessed 16 April 2022]

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5 Kristin Hussey, Imperial bodies in London (Pennsylvania: University of Pittsburgh Press, 2021), p. 25 6 Yang et al., ‘The experience of patients with cancer on narrative practice: A systematic review and meta‐synthesis’, Health Expectations, 23.2 (2020), 274–283 [accessed 18 March 2022] 7 Robin Stern, Turning the national illness service into the national health service (2021) [accessed 29 May 2022] 8 Lynna Lan Tien Nguyen Do, Bobo doll experiment (2020) [accessed 18 March 2022] 9 Ivor F. Goodson, and Scherto R. Gill, ‘Narrative pedagogy: Life history and learning’, Counterpoints, 386 (2011), 113–136 (p. 118) [accessed 19 March 2022] 10 Hussey, Imperial bodies in London, pp. 50–51 11 Aidan Paterson, The art of storytelling and the science of fundraising (2021) [accessed 19 March 2022] 12 Channel 4, Stand up to cancer smashes record with over £31 million raised (2021) [accessed 19 March 2022] 13 Laura Av Marlow, Amrit Sangha, Julietta Patnick, and Jo Waller, ‘The Jade Goody effect: Whose cervical screening decisions were influenced by her story?’ Journal of Medical Screening, 19.4 (2012), 184–188 [accessed 19 March 2022] 14 Shropshire Community Health NHS Trust, Using stories to improve patient, carer and staff experiences and outcomes [accessed 19 March 2022] 15 Claire M. Ghetti, ‘The crisis of the unacknowledged context’, Nordic Journal of Music Therapy, 29.5 (2020), 395–397 [accessed 19 March 2022] 16 Zoë Lescaze, The pop-culture evolution of Frankenstein’s monster (2017) [accessed 19 March 2022] 17 Mary Shelley, Frankenstein, or, the modern prometheus, 1st ed. (Ware: Wordsworth Classics, 1993), chapter 5 18 D. Cottom, Frankenstein and the monster of representation [pdf] (Baltimore: Johns Hopkins University Press, 1980), 9(28), pp. 60–71 (p. 61) [Accessed 2 July 2020] 19 Birga Mareen Schumpe, and Hans-Peter Erb, ‘Humans and uniqueness’, Science Progress (1933–), 1 (2015), 1–11 [accessed 19 March 2022] 20 General Medical Council, The duties of a doctor registered with the General Medical Council (2022) [accessed 19 March 2022] 21 Shelley, Frankenstein, or, the modern prometheus 22 Daniel E. Epner, Vinod Ravi, and Walter F. Baile, ‘When patients and families feel abandoned’, Support Care Cancer, 19.11 (2011), 1713–1717 [accessed 19 March 2022] 23 Back et al., ‘Abandonment at the end of life from patient and clinician perspectives: Loss of continuity and lack of closure’, The Archives of Internal Medicine, 169.5 (2009), 474– 479 [accessed 19 March 2022] 24 Claire Edmonds, Fiona McFatter, and Martin Leiper, ‘How many doctors? Relational continuity in end of life care’, BMJ Supportive & Palliative Care, 2 (2012), A87–A88 [accessed 19 March 2022]

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25 Edmonds, McFatter, and Leiper, ‘How many doctors?’ 26 Pauline W. Chen, When patients feel abandoned by doctors (2009) [accessed 19 March 2022] 27 National Institute for Health and Care Excellence, People’s experience using adult social care services (2019) [accessed 19 March 2022] 28 Marineli et al., ‘Mary Mallon (1869–1938) and the history of typhoid fever’, Annals of Gastroenterology, 26.2 (2013), 132–134 [accessed 19 March 2022] 29 Marineli et al., ‘Mary Mallon (1869–1938) and the history of typhoid fever’ 30 NHS, Typhoid fever (2022) [accessed 19 March 2022] 31 C.-E. A. Winslow, ‘A statistical study of the fatality of typhoid fever at different seasons’, Publications of the American Statistical Association, 8.59 (1902), 103–125 (p. 106) [accessed 19 March 2022] 32 Mary Kilbourne Matossian, ‘Death in London, 1750–1909’, Journal of Interdisciplinary History, 16.2 (1985), 183–197 (p. 193) [accessed 19 March 2022] 33 Charles Rivers Editors, Typhoid Mary: The notorious life and legacy of the cook who caused a typhoid outbreak in New York ([n.p.]: Independently published, 2020), p. 15 34 Marineli et al., ‘Mary Mallon (1869–1938) and the history of typhoid fever’ 35 Marineli et al., ‘Mary Mallon (1869–1938) and the history of typhoid fever’ 36 Marineli et al., ‘Mary Mallon (1869–1938) and the history of typhoid fever’ 37 Kevin Connolly, How Typhoid Mary left a trail of scandal and death (2020) [accessed 19 March 2022] 38 Kathryn Hughes, Gender roles in the 19th century (2014) [accessed 19 March 2022] 39 Sally Mitchell, Victorian Britain (Routledge Revivals) (London: Routledge, 2011), p. 26 40 Barry Godfrey, Jane Richardson, and Sandra Walklate, Domestic abuse in England and Wales 1770–2020 working paper no. 2, p. 1 (2020) [accessed 16 April 2022] 41 Jenna Dodenhoff, ‘“A dangerous kind”: Domestic violence and the Victorian middle class’, TCNJ Journal of Student Scholarship, 10 (2008), p. 1 [accessed 16 April 2022] 42 Charles Rivers Editors, Typhoid Mary, p. 53 43 Bruce Goldman, Scientists get a handle on what made Typhoid Mary’s infectious microbes tick (2013) [accessed 16 April 2022] 44 Charles Rivers Editors, Typhoid Mary, p. 30 45 Rosalind Carter, ‘The legacy of Typhoid Mary’, The Lancet, 349.9053 (1997), 739 [accessed 16 April 2022] 46 Charles Rivers Editors, introduction (p. 1) 47 Marineli et al., ‘Mary Mallon (1869–1938) and the history of typhoid fever’ 48 Charles Rivers Editors, Typhoid Mary, p. 19 49 Wicklow People - Saturday 21 August 1909 50 Charles Rivers Editors, Typhoid Mary, pp. 29–30 51 Harry S. Abram, ‘The psychology of chronic illness’, The Annals of the American Academy of Political and Social Science, 447 (1980), 5–10 (pp. 6–7) [accessed 16 April 2022]

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52 Abram, ‘The psychology of chronic illness’ 53 V. A. Entwistle, S. M. Carter, A. Cribb et al., ‘Supporting patient autonomy: The importance of clinician-patient relationships’, Journal of General Internal Medicine, 25 (2010), 741–745 [accessed 16 April 2022] 54 NHS, Enabling people to make informed health decisions (2022) [accessed 16 April 2022] 55 Terry Rabinowitz, and Ryan Peirson, ‘“Nothing is wrong, doctor”: Understanding and managing denial in patients with cancer’, Cancer Investigation, 24.1 (2009), 68–76 [accessed 16 April 2022] 56 Terry Rabinowitz, and Ryan Peirson, ‘“Nothing is wrong, doctor”’ 57 Sérgio M. Martinho, Bárbara Santa-Rosa, and Margarida Silvestre, ‘Where the public health principles meet the individual: A framework for the ethics of compulsory outpatient treatment in psychiatry’, BMC Medical Ethics, 23.77 (2022) [accessed 11 December 2022] 58 Janice Hopkins Tanne, ‘Tuberculosis case exposes flaws in international public health systems’, BMJ, 334.7605 (2007) [accessed 11 December 2022] 59 The New York Times, TB carrier Andrew Speaker apologizes (2007) [accessed 11 December 2022] 60 Janice Hopkins Tanne, ‘Tuberculosis case exposes flaws in international public health systems’ 61 New York Times, TB carrier Andrew Speaker apologizes 62 Lawrence C. Perlmuter, and Richard A. Monty, ‘The importance of perceived control: Fact or fantasy? Experiments with both humans and animals indicate that the mere illusion of control significantly improves performance in a variety of situations’, American Scientist, 65.6 (1977) [accessed 11 December 2022] 63 Marineli et al., ‘Mary Mallon (1869–1938) and the history of typhoid fever’ 64 WHO, HIV: Key facts (2022) [accessed 11 December 2022] 65 Donald P. Francis, ‘Commentary: Deadly AIDS policy failure by the highest levels of the US government: A personal look back 30 years later for lessons to respond better to future epidemics’, 33.3 (2012), 292 [accessed 11 December 2022] 66 Owen Bowcott, Thatcher tried to block ‘bad taste’ public health warnings about AIDS (2015) [accessed 11 December 2022] 67 Malcolm J. Sherman, ‘Review: Author argues that everyone is born with a head for numbers reviewed work: What counts: How every brain is hardwired for math by Brian Butterworth’, American Scientist, 87.5 (1999), 458–461 [accessed 12 December 2022] 68 Michael Shermer, The brain is not modular: What fMRI really tells us (2008) [accessed 12 December 2022] 69 Humphrey Yang, Elon Musk’s $195 billion net worth visualized with rice (2021) [accessed 12 December 2022] 70 UnAIDS, Global HIV & AIDS statistics — Fact sheet (2022) [accessed 12 December 2022] 71 Ian Stulberg, and Margaret Smith, ‘Psychosocial impact of the AIDS epidemic on the lives of gay men’, Social Work, 33.3 (1988), 280 [accessed 12 December 2022]

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72 Douglas Crimp, ‘Introduction’, AIDS: Cultural Analysis/Cultural Activism, 43 (1987), 3–16 [accessed 12 December 2022] 73 UK AIDS Memorial Quilt, Memorial quilt (2022) [accessed 12 December 2022] 74 National AIDS Memorial, About the AIDS memorial quilt (2022) [accessed 12 December 2022] 75 National AIDS Memorial, The National AIDS Memorial (2022) [accessed 12 December 2022] 76 Vladimir J. Konečni, ‘Emotion in painting and art installations’, American Journal of Psychology, 128.3 (2015), 305–322 [accessed 12 December 2022] 77 Cindy Zerm Ingram, ‘States of feeling: Using emotion to connect artist and viewer’, Art Education, 60.3 (2007), 25–32 [accessed 12 December 2022] 78 UK AIDS Memorial Quilt, About the UK AIDS Memorial Quilt (2022) [accessed 12 December 2022] 79 UK AIDS Memorial Quilt, Memorial quilt 80 Rosenthal Archives, 125 Moments: 040 Corigliano’s symphony no. 1 (2016) [accessed 12 December 2022] 81 Dave Kopplin, Symphony no. 1 (2022) [accessed 12 December 2022] 82 Karen Schrock, ‘Why music moves us’, Scientific American Mind, 20.4 (2009), 32–37 (p. 35) [accessed 12 December 2022] 83 Schrock, ‘Why music moves us’, p. 34 84 Jonna K. Vuoskoski, William F. Thompson, Doris McIlwain, and Tuomas Eerola, ‘Who enjoys listening to sad music and why?’, Music Perception, 29.3 (2012), 311–317 [accessed 12 December 2022] 85 Jennifer Edson Escalas, and Barbara B. Stern, ‘Sympathy and empathy: Emotional responses to advertising dramas’, Journal of Consumer Research, 29.4 (2003), 566–578 (p. 566) [accessed 12 December 2022] 86 Suzanne Keen, ‘A theory of narrative empathy’, Narrative, 14.3 (2006), 207–236 (p. 212) [accessed 12 December 2022] 87 Sharon Anderson, Janet Fast, Norah Keating, Jacquie Eales, Sally Chivers, and David Barnet, ‘Translating knowledge: Promoting health through intergenerational community arts programming’, Health Promotion Practice, 18.1 (2017), 15–25 [accessed 12 December 2022] 88 Murray Smith, ‘Altered states: Character and emotional response in the cinema’, Cinema Journal, 33.4 (1994), 34-56 [accessed 12 December 2022] 89 Peter Bradshaw, Dallas Buyers Club – Review (2014) [accessed 12 December 2022] 90 Aisha Harris, How accurate is Dallas Buyers Club? (2013) [accessed 12 December 2022] 91 Steve Friess, Don’t applaud Jared Leto’s transgender ‘Mammy’ (2014) [accessed 12 December 2022] 92 ‘Dallas Buyers Club’, dir. by Jean-Marc Vallée (Focus Features, 2013)

Chapter 4

Medical Ethics

Note: The field of medical ethics is complex, and broad. While this work touches on common ethical theory, it does not aim to provide an in-depth analysis of any particular view, and supplementary reading is essential. Rather, this work outlines the ways in which arts/humanities engagement can supplement your knowledge and assist in the provision of context and alternative viewpoints, which may act as a guide as you attempt to convert ethical theory into practical application. Medical ethics is traditionally viewed, in medicine, as the way in which a practitioner conducts themselves, and guides their clinical practice by means of adherence to the ‘four pillars.’1 Before embarking upon any particular treatment recommendation/ decision, a practitioner should always consider the following: 1. Beneficence – is it in the patient’s best interests? 2. Non-maleficence – do the benefits outweigh the risks? 3. Respect for Autonomy – has the patient been enabled to reach an informed decision? 4. Justice – is it fair? In order to answer the question of beneficence, it is often necessary to explore the answers to the other three pillars. To expand upon this a little more, it becomes helpful to view these considerations in terms of (hypothetical) clinical scenarios.

DOI: 10.1201/9781003292067-4

M edical Ethics   

Scenario 1 A 15-year-old patient attends a GP appointment to request prescription of the contraceptive pill. The legal age of consent for sexual relationships within Scotland is 16. •

Beneficence – would prescription of oral contraceptives be in the patient’s best interests? The patient is engaging in sexual activity below the age of consent. It would be in their best interests to mitigate the risk of unplanned pregnancy.

•

Non-maleficence – do the benefits of oral contraceptive prescription outweigh the risks? When taken correctly, oral contraception can be up to 99% effective in preventing unwanted pregnancy.2 Common side effects are usually minor, and can include mood swings, nausea, breast tenderness, and headaches, with more serious complications including blood clots, and certain cancers, being identified as low risk.3

•

Respect for Autonomy – has the patient been enabled to reach an informed decision? As this patient is below the legal age for consent, consideration should be given to whether or not they can be deemed Gillick competent, or whether or not they meet Fraser guidelines. These are sets of competencies/guidelines which determine what constitutes appropriate advice (specifically relating to contraceptive treatment options and sexual health), as well as a child’s capacity to consent to treatment without parental consent/knowledge; however, there are no set questions which determine this, and each practitioner must exercise reasonable judgement. In this instance, the patient’s GP talks them through the contraceptive options available and assesses their maturity level alongside this conversation. The risks and benefits of oral contraceptive use are discussed, as well as a discussion of the consequences which may arise from their decision (for instance, the fact that oral contraceptives will not prevent sexually transmitted infection). The less invasive alternative of condom use is discussed; however, while the patient uses these already, she expresses concern about their reliability. Discussion is also held around issues of consent, and the recommendation is made that she informs her parents. She expresses a wish not to do this, but it is agreed that she will consider it in future.4 Following this discussion, her practitioner deems that she is able to provide informed consent.

•

Justice – is it fair to prescribe oral contraceptives? Contraceptive medications are widely prescribed and are free in the UK to those who wish to utilise them.

Outcome: Prescription of oral contraceptives in this instance is ethical. The patient is below the legal age of consent, but from discussion it is determined that she has a reasonable understanding of the risks and benefits of taking such a prescription, as well as a good understanding of the reason to request the prescription (i.e., to avoid unwanted pregnancy/mistrust of less invasive options available). While uncomfortable side effects are common, more serious potential side effects are considered to be very low risk, and her physical observations (weight, blood pressure, etc.) are all within normal limits. Oral contraceptives are widely prescribed and available to women, free of charge, throughout the UK, and prescription in this instance is reasonable, and in the patient’s best interests.

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Scenario 2 A patient attends a psychiatric clinic requesting a trial of Psilocybin therapy for treatment of long-standing depression. The active ingredient in what are commonly known as ‘Magic Mushrooms,’ Psilocybin is a naturally occurring hallucinogenic and anxiolytic, which mimics the effects of serotonin in the central nervous system.5 In clinical trials, Psilocybin has been found to be at least as effective as more conventional SSRI antidepressant medications (Escitalopram); however, the drug (as of 2022) remains unlicensed for the treatment of depression,6 and, indeed, has been restricted as a Class A drug in the UK since 1971.7 •

Beneficence – would treatment with Psilocybin therapy be in the patient’s best interests? The treatment of depression is in the best interests of the patient; however, the use of unlicensed treatments/therapies should be viewed with caution.

•

Non-maleficence – do the benefits of Psilocybin therapy outweigh the risks? Studies of Psilocybin use have suggested low toxicity, as well as low risks of addiction and overdose, and there is a growing interest in the use of this Psilocybin treatment-resistant depression. However, the risks associated with Psilocybin use are not yet fully understood.8

•

Respect for Autonomy – has the patient been enabled to reach an informed decision? The patient has read about Psilocybin therapy online and brings a print-out to clinic with them which shows information from several websites and internet chat forums – many of them abroad. The patient understands that Psilocybin has been determined to be fast acting and ‘safe’ and is struggling to deal with their current psychological state, stating that ‘I just want to feel like myself again.’ From further conversation, however, it is notable that they are unaware of the unknown status of the longer-term risks of Psilocybin therapy. Following this discussion, it is clear that the patient does not possess all the information necessary to provide informed consent.

•

Justice – is it fair to prescribe Psilocybin therapy? Psilocybin therapy is, at time of writing, both unlicenced and restricted as a Class A drug and is not offered routinely to patients within the UK.

Outcome: While treatment of the patient’s depression is appropriate, the use of an unlicensed therapy in this instance would be unethical, and not in the patient’s best interests. While the patient was aware of the potential short-term side effects of Psilocybin use, they were unaware of the potential longer-term side effects, and indeed the risks of long-term Psilocybin therapy in this scenario could potentially greatly outweigh the benefits. Furthermore, where this individual’s condition has proven long-standing, it is not drug-resistant, and they have responded well in the past to more conventional, licenced treatments. It would therefore be more appropriate to explore re-prescription of these preparations in the first instance. Finally, it would be unethical to offer this treatment on a routine basis as both an unlicensed and restricted Class A drug.

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While these four principles can be argued to be simplistic, they can also be seen to afford a well-rounded and widely acceptable basis for ‘doing good medical ethics.’9 However, it has been suggested – and the author of this work agrees – that the manner in which medical ethics are approached within medical education is often flawed. As asserted in the Journal of Medical Ethics in 2005: The dominant conception of medical ethics being taught in British and American medical schools is at best pointless and at worst dangerous … although it is laudable that medical schools have now given medical ethics a secure place in the curriculum, they go wrong in treating it like a scientific body of knowledge.10 As we discussed earlier, there is a long-standing communicative divide between the sciences and the humanities which, if we fail to bridge, means that we cannot perform to the best of our ability – in any sphere. By treating medical ethics as a scientific body, and negating the importance of the humanities, we are in effect cutting off our own lines of communication. The manner in which you conduct yourselves professionally can, and will, have a vast impact upon the patients under your care, and an understanding of the concept of medical ethics is vital to not only your clinical practice, but also your moral obligations towards your patients. It can be seen, however, that medical ethics is, by its nature, an evolving subject. Just as we cannot consider our professional interactions to conform to a ‘talk-bynumbers’ format, so our considerations of medical ethics will shift and evolve, with each individual scenario requiring different things from us at different times. Every patient under your care is an individual, and what will be a reasonable ethical judgement for one, may not automatically apply to another. The ethical standards to which we hold ourselves as a society can be seen to grow and change, and standards or practices which may have been acceptable in the past may no longer be acceptable today. With this in mind, it goes without saying that what you study today may not be relevant tomorrow. For instance, in relation to mental health inpatient care, throughout history the use of physical restraints was once commonplace within psychiatric institutions, with the purpose of institutional care being primarily custodial, rather than curative. While the extent to which restraints – such as chains, and straitjackets – were used did vary from one institution to another, they were nevertheless universally accepted as a familiar and necessary part of mental health care and treatment. While this would be viewed as a gross breach of both patient dignity and human rights today, the practice wasn’t reformed until the mid-1800s, after a patient named William Scrivinger was discovered dead at Lincoln Asylum in 1829. William had died from strangulation, having been strapped to his bed in a straitjacket and left overnight

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without supervision. The incident led to the abolition of all physical restraints at Lincoln Asylum, and the implementation of a non-restraint system of psychiatric care.11 For a more modern example, in 2014 an international manhunt was launched, involving all 190 member countries of Interpol, after 5-year-old Ashya King was taken from Southampton General Hospital by his parents, against medical advice.12 Ashya was, at that time, recovering from treatment of a high grade paediatric tumour (medulloblastoma), and his parents wished him to undergo proton beam therapy, as opposed to conventional radiotherapy, with their understanding being that it was less harmful. Proton beam therapy was, at that time, not routinely provided in the UK, and Ashya’s medical team had not recommended this.13 Ashya’s parents absconded with him to France, where they aimed to seek proton therapy abroad. They were arrested in Spain,14 however, they were later released as the warrant against them was dropped by the UK. A High Court ruling eventually led to Ashya receiving 30 sessions of proton beam treatment at the Proton Therapy Centre (PTC) in Prague, and he was later declared cancer free.15 Following further research, fewer than ten years later, as of 2022 there are now two centres in the UK which provide proton beam therapy as a routine treatment; The Christie NHS Foundation Trust (Manchester) and University College London Hospital (UCLH) NHS Foundation Trust.16 Engaging with books/literature is a fantastic way to broaden our ethical horizons and keep up to date with evolving ethical trends. Take, for example, the short story The Yellow Wallpaper, by Charlotte Perkins Gilman (also known by her first married name of Charlotte Perkins Stetson). First published in 1892, The Yellow Wallpaper is a semi-autobiographical commentary on the medical treatment of women – both physical, and psychiatric – in the nineteenth century. The story is diary-like, being composed of secret journal entries from an unnamed female narrator, which detail her descent from postnatal depression into psychosis as she is subjected to solitary confinement by her husband (who is also her physician). The ethical issues raised in The Yellow Wallpaper are many – from the use of social isolation: I tried to have a real earnest reasonable talk with him the other day, and tell him how I wish he would let me go and make a visit to Cousin Henry and Julia. But he said I wasn’t able to go, nor able to stand it after I got there; and I did not make out a very good case for myself, for I was crying before I had finished.17

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to the medical treatment of an individual by their spouse: If a physician of high standing, and one’s own husband, assures friends and relatives that there is really nothing the matter with one but temporary nervous depression – a slight hysterical tendency – what is one to do?18 Significantly, the work also offers the reader an insight into the mind and experiences of the narrator. Actions which the characters around her view as difficult or unmanageable behaviour, she sees as rational. This understanding enables us to reframe her interactions as valid expressions of misery and frustration: I am getting angry enough to do something desperate. To jump out of the window would be admirable exercise, but the bars are too strong even to try.19 Outside of her written work, Gilman herself provides us with further ethical considerations. A supporter of not only feminist issues, but also voluntary euthanasia and a ‘right-to-die’ advocate, Gilman took her own life in 1935 following a terminal breast cancer diagnosis. In what would now be called a ‘suicide note,’ she famously declared ‘I have preferred chloroform to cancer.’20 To take suicide as an example, the terminology of ethical issues is also rapidly evolving, and the language with which we discuss patients, their treatments, and conditions is incredibly important. The traditional phrase ‘committed suicide,’ for instance, is now frowned upon, as it relates the act of suicide to one of a criminal nature – whereas the act of suicide was in fact decriminalised in the UK in 1961. Phrases such as ‘died of suicide’ are now deemed more ethically competent, as they work against long-standing stigma. The words we choose to discuss any given topic display not only our own attitudes but also those of our society, and it is important that we consider the ethical and emotional implications of our language to reflect an atmosphere of non-judgemental inclusion which in turn provides patients with a safe space in which to discuss their fears, worries, and concerns. Clinical psychologist Sally Spencer-Thomas describes the litmus test for talking about suicide to be the substitution of the word ‘cancer:’ ‘We wouldn't say “committed cancer” or “successful cancer.” We would simply say “cancer death” or “died of cancer.” Thus, when it comes to suicide, we should say “suicide death” or “died of suicide.”’21 Further literary works which can help provide alternative viewpoints to ethical issues include biographical or true-life works, such as Dr Graham Stokes’ And Still

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the Music Plays. A collection of twenty-two stories centred around people living with dementia, Stokes’ work takes common ethical issues found within dementia care – such as the management of inappropriate behaviours, and quality of life – and focuses skilfully on the individual; ‘the central theme is that everyone with dementia is unique, with a distinctive personality and experiences, and it is only by thinking deeply about each person individually … that we can respond to their unique needs and give the best possible care.’22 There are multiple ethical theories which you may look at as part of your training, and these may often conflict with one another. For instance, these theories may include: a. DEONTOLOGY Deontology, or duty-based ethics, asserts that what actions are right/wrong are based on set rules; for example, ‘being honest is good,’ ‘lying is wrong.’23 Any action you take is therefore judged by whether or not you followed the ‘rules’ in any given situation. For example, a patient attends clinic complaining of a wide array of symptoms for which no physical cause is found. Their practitioner prescribes them a short course of placebo medication, and the patient improves due to the placebo effect. A deontological perspective could label this treatment as ethically unjust, as the patient has not been fully informed of their treatment regime. b. CONSEQUENTIALISM Consequentialism, or the theory of right action, asserts that what actions are right/ wrong are based on what their outcomes – or consequences – are.24 The above placebo prescription from a consequentialist perspective, therefore, becomes ethically just, as the consequence of the prescription is that the patient’s health has improved. c. VIRTUE ETHICS Virtue Ethics views good clinical practice as practice which stems from the good moral character of the practitioner, and how this enables them to promote good outcomes for their patients. 25 In the above instance, the prescription of a placebo medication becomes ethical or unethical depending upon the intention of the practitioner – to heal, harm, placate, etc. If the prescription of placebo medication was made with the intent to improve health – it can be deemed ethically just. If it was made with the intent to silence a persistent patient – it can be deemed ethically unjust. This renders Virtue Ethics an incredibly subjective field, and what one practitioner may view as good intent, another may view as unethical. Not every clinical scenario you face will fall comfortably into deontological, consequentialist, or virtue ethics categories, and it is often necessary to blend

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together several ethical theories when determining the best course of action. Due to not only the conflicting nature of ethical theories, but also the uniqueness of each individual scenario, it can be seen that the study and implementation of ethics are subjective fields, with perspectives differing from both clinician to clinician, and patient to patient. For instance, in relation to the prescription of placebo medications specifically, a 2013 study performed by researchers at Southampton and Oxford Universities found that 66% of UK doctors surveyed said that the use of pure placebo medication (e.g., sugar pills, saline injections, etc.) is ethically acceptable under certain circumstances, while 33% said that the use of pure placebo medications is never acceptable. Impure placebos (e.g., antibiotics, blood tests, etc.) were more widely accepted, with 84% of doctors deeming them acceptable. 26 In this instance, there is clearly not a ‘one theory fits all’ method of ethical prescription, and the use of placebo medications can therefore be deemed subject to considerations of not only ethical guidelines but also, concurrently, subjective practitioner values, opinion, and the individual merits of each patient interaction. Elements you should consider should also include not only your own moral/ethical viewpoint, but also matters such as an individual’s motivations, goals, personal and religious beliefs, support network, and values – although, of course, this list is by no means exhaustive. While everyone you treat matters equally, it is vital to recognise that this does not mean you should treat everyone the same. To expand upon this further, it is helpful, when considering medical ethics in practice, to consider a viewpoint from several sides: 1. What are the clinical facts? 2. What does the patient want? 3. What is the family view? 4. What are your feelings as a practitioner?

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Scenario 3 Jemima is an 84-year-old lady with advanced dementia. She is resident in a nursing home, and her

family is very supportive of, and involved in, her daily care needs. Jemima is now predominantly non-verbal, immobile, and has significant difficulty swallowing. As such, she has been treated with antibiotics for aspiration pneumonia on two occasions in the previous six weeks, and she is now considered to be within the end stages of life. Ethical Dilemma: In terms of advanced care planning, should Jemima be given a third course of antibiotics for aspiration pneumonia? Clinical Considerations: Pneumonia in people with dementia is known to be associated with severe discomfort, and Jemima has previously responded well to antibiotic therapy; however, it is noted that discomfort from pneumonia occurs regardless of treatment with antibiotics, and that the role of comfort is increasingly accepted to be the primary goal of medical treatment for care home residents with dementia, especially – but not exclusively – for those nearing death.27 As such, Jemima could be offered antibiotics on both curative and palliative bases for symptomatic control. Other options include end-of-life care (comfort) medications to control symptoms such as pain and distress. While initial dementia treatments are palliative yet lifeextending, it can be seen that, in relation to advanced dementia, barriers to quality endof-life care include dementia not being viewed as a terminal diagnosis.28 The major clinical consideration therefore becomes an ethical question in its own right: will treatment with antibiotic therapy provide worthwhile quality-of-life/end-of-life experience? Patient View: Prior to her retirement at the age of 65, Jemima had a busy and active working life. In retirement, prior to the onset of her dementia she was previously a very active member of her local community, being a member of several voluntary groups, and the host of a ladies’ reading group. Jemima has previously expressed the opinion that she would not be happy to be reliant on others for her care, being a very independent and active individual. Jemima is markedly distressed by her current physical state, despite having a limited understanding of her situation. There is an Advance Statement in Jemima’s case file and, while this document is not legally binding,29 it clearly states her wishes to remain in her own home, be treated with oral antibiotics only, and to not receive attempts at resuscitation. A ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) document to this effect is already in place, which was completed by Jemima’s GP. Family View: Jemima’s family consists of her son and daughter-in-law, and two adult grandchildren. The family as a collective is very involved in her care; however, one granddaughter (Emily) in particular is very close to Jemima and is not accepting of her end-of-life status. Emily also holds Lasting Power of Attorney for her grandmother and, as such, she is pushing for future IV antibiotic therapy, as well as hospital transfer and admission. While she accepts her grandmother’s wish to not undergo resuscitation attempts, she views the potential nonprescription of antibiotic therapy to be a ‘death sentence’ and accuses medical staff of ‘trying to play God.’ Jemima’s husband sadly passed away within the past six months, and the family is struggling to come to terms with his death, alongside Jemima’s failing health status. Possible Outcomes: This is not a straightforward case, and there are multiple possible outcomes for Jemima to be considered:

1.



2.

3.

Treatment with oral antibiotics treats Jemima’s pneumonia and associated symptoms, which promotes comfort and prolongs her life. Treatment with oral antibiotics does not treat Jemima’s symptoms and she succumbs to her illness. Treatment with IV antibiotics in a hospital setting treats Jemima’s pneumonia and associated symptoms, and she tolerates this treatment without an increase in her distress levels due to a change in environmental factors.

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4.



5.



6.

Treatment with IV antibiotics in a hospital setting treats Jemima’s pneumonia but causes an increase in her distress levels due to a change in environmental factors. This places her at risk from iatrogenic harm. Treatment with IV antibiotics in a hospital setting does not treat Jemima’s pneumonia and she succumbs to her illness. Jemima is not prescribed antibiotics and receives medication to treat her discomfort and any associated symptoms, alongside anticipatory care planning. Jemima succumbs to her illness.

Discussion: Jemima’s wellbeing and experience is the primary focus of this scenario. While the opinions and concerns of her family members hold value, it is important to work with them as far as possible to provide a satisfactory outcome which encompasses Jemima’s rights to dignity, and autonomy. To this end, Jemima’s practitioner holds a meeting with her family to discuss her ongoing care. The terminal stage of Jemima’s illness is discussed, as well as her wishes as expressed in her Advance Statement. Jemima’s practitioner explains that, as dementia reaches its final stages, it is quite common for swallowing to become unsafe. It is therefore agreed that a Speech and Language Therapy (SALT) assessment will be organised to determine the safety of her swallow. If the SALT team determines that Jemima is not safe to swallow at all and, taking into consideration what she has stated in her Advanced Statement, it would appear that active treatment should stop, and the main emphasis of treatment should be on comfort. The timescale of Jemima’s infections is also discussed. Given the close proximity of her infective episodes, her practitioner explains that the prescription of antibiotics is not giving Jemima any lasting improvement. While it is upsetting for her family, it is discussed that it is likely not in Jemima’s best interests to give a further course of antibiotic therapy. While this course of action is not what Emily wants, the provision of context is provided by way of discussion of all treatment options, as well as weighing up the likelihood of treatment success with associated distress or discomfort to Jemima. For instance, given Jemima’s previously stated wishes to only receive oral antibiotic therapy, it would be unethical to go against these wishes by implementing potential outcomes 3, 4, or 5. This leaves the potential treatment options as provision of oral antibiotic therapy, or prescription of comfort care medication only, and the opinions of Emily and the rest of Jemima’s family can potentially play a role in this decision. It is explained that, while life can be prolonged, it is not always in an individual’s best interests to utilise every therapy available. Emily remains firm in her view that antibiotic therapy is appropriate; however, she accepts that Jemima would find hospital transfer distressing. Jemima’s practitioner takes a compassionate view toward Emily, recognising that the decisions she makes now on behalf of her grandmother will have lasting consequences not only on Jemima, but also Emily as she lives with her decisions. A compromise is therefore reached in this instance, and it is decided that – should the SALT team determine her swallow to be safe – Jemima will be offered one further course of oral antibiotic therapy, before her treatment outlook shifts to provision of comfort care at the end of life. This takes into account not only Jemima’s terminal status, but also allows her family reasonable time to come to terms with this. Furthermore, as antibiotic therapy in end-of-life care can provide symptomatic relief, prescription of the same would not be unreasonable in a palliative setting.

• • •

Do you agree with this clinical outcome? Why/why not? How could the clinical recommendation be affected if Jemima were a member of a religious group such as a Christian Scientist, or a Jehovah’s Witness? How could the clinical recommendation be affected if Jemima had no close family?

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The study of medical ethics can be seen to play a key role in your success as a fully developed physician, and it has been established that ‘literature, art in its various forms, drama, poetry, rhetoric, aspects of religion and other spiritual experience, history, aspects of philosophy other than ethics, even music may all in some way illuminate one of the central medical ethics issues – how ought a doctor to live his or her life as a good doctor’.30 But what exactly makes a good doctor? In 2019, the Medical Schools Council released a factsheet detailing some of the key attributes medical schools wish to see in their students. While this did detail empathy and the ability to care for others, as well as effective communication, the factsheet also included attributes such as the motivation to study medicine, personal organisation, and academic ability, as well as problem solving ability, risk management, and resilience.31 All these attributes are naturally taken into consideration by medical schools – but what exactly do patients want from their physician? A good doctor to me is someone who approaches their patient holistically. Recently, a doctor asked me ‘what's the worst thing about your (multiple) conditions’ and we made a plan of action from there. It felt good to be seen as a person rather than a set of numerical results. – Anon The best doctors I've seen are ones that ask me about my life and what I want from it, rather than just treating my symptoms. – Anon Someone who listens properly to what patients are telling them, and treats their patients as the experts in their own experience and as people who might know things rather than patronising them. They should be knowledgeable, but properly aware that there are limits to their knowledge, compassionate, with the ability to think systemically about the different factors that are impacting on health – as well as being open to trying different options, out of the box ideas etc (rather than rigidly sticking to the one recommended treatment). A good doctor sees that everyone in a room has different things to contribute, and doesn’t consider themselves to be the most important voice in the room. – Anon Someone who listens and can detect a problem before it occurs alongside issues that the patients have at the time. Things that could be something bigger if left longer, or in the future. – Anon While these statements obviously only represent a small sample size, they nonetheless all have one thing in common: patients want their doctors to consider them holistically.

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To illustrate, let us consider communication with an overweight patient as an example (although the points raised here are applicable to patients with any kind of stigmatised condition – such as addiction – or personal insecurity). The obesity crisis is one of the biggest health crises ever faced by the UK. As of July 2020, it was estimated that almost two-thirds (63%) of adults in England were overweight or living with obesity – and one in three children left primary school overweight or obese, with obesity-related illnesses costing the NHS £6 billion a year.32 From heart disease, diabetes, and stroke, to sleep apnoea, joint/mobility issues, and certain types of cancers – the health risks associated with being overweight are numerous. It can therefore be easy, as a practitioner, to want to educate your patients on what constitutes a healthy lifestyle, encourage weight loss, and minimise future risks to their health and wellbeing. Indeed, nothing about this stance is unreasonable. Rather, the barriers to ongoing health and wellbeing form when you fail to take into consideration your patient’s lived experience. Recommending a patient eat fewer calories might lead to weight loss – but what other conditions could this brush over, or even create? And what does it do to the patient’s state of mind? Engagement with the arts and humanities is able to provide an insight into alternative world views, and the anxieties, insecurities, and prejudices which often come along with them – and, as a result, open up new channels of more empathetic communication. The 2013 Channel 4 comedy/drama series My Mad Fat Diary, for example, follows the life of 16-year-old Rachel ‘Rae’ Earl as she navigates life alongside puberty, obesity, and mental illness. The show is presented as a display of Rae’s inner thoughts and feelings alongside her experiences and provides us with an insight into her life as an individual struggling with their weight. Across three series, we see Rae struggle with her body image – walking with her eyes down, fearing the gaze of both strangers and her peers – and being unable to eat in public, while conversely binge-eating by herself. We also view interactions with Rae’s mother from her perspective – a woman who is often critical of her weight and overly focused on outward appearances (despite being in other respects a very loving parent). We are also given insight into Rae’s sessions with her therapist, Kester, which often provide detailed insights into how she views herself. In series 2, episode 7, for instance, she is asked by Kester to describe things she doesn’t like about herself: ‘I’m fat. And I’m ugly. And I ruin things … [I’ve felt that way] since I was about 9, or 10.’33 Having identified that these emotions are deep seated, and long-standing, Kester then asks her to imagine her 10-year-old self sitting on a chair next to her, and asks her what she would say to her if she had the opportunity:

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‘[I’d tell her] that she’s fine. That she’s perfect.’34 This is a powerful, emotional scene, which gives us insight not only into the experiences and emotions of the protagonist, but also promotes both empathy and sympathy, and compassion – as we connect with her character, put ourselves in her position, and want to tell her the same – that she is fine – that she is perfect. Shows such as My Mad Fat Diary help us understand the world view of someone living under a critical gaze, and when seeing people in your clinics it is important to remember the somewhat obvious fact that they will be aware of their situation. An individual who is overweight, for instance, is not blind to the fact – you pointing it out to them does not come as a revelation. A 2019 study by Haga et al., entitled Putting Life on Hold: Lived Experiences of People with Obesity, found that participants felt such an awareness of the size of their bodies that they felt it was a constant presence in their daily life. Many individuals even reported avoiding physical activities which they enjoyed – such as hiking, skiing, and travelling – as at some point they had felt their bodies were too unmanageable, or because they felt too self-conscious about other people’s reactions to them performing, or struggling to perform, these activities. Furthermore, living with obesity was found to have affected participants’ social connections, romantic relationships, and interviewees reported a constant sensation of being judged by others due to their size, often feeling that they struggled to be seen as something other than simply a ‘large body.’ In a related vein, many participants had regularly experienced judgemental words from others, including children, elderly people, or people affected by alcohol, or mental illness (who often do not hold back from ‘telling the truth’).35 My grandmother had dementia, and I cared for her during the final years of her life. She went through a phase of refusing to eat – as many people with dementia do – and you’d need to start ‘prepping’ her for mealtimes a good hour or so ahead of actually serving any food. I remember once, sitting in her lounge, and to encourage the idea of eating I told her I was ‘starving.’ She looked me up and down, and replied with ‘Really? You don’t look it.’ I know it was her illness that made her be so blunt, but it still stung. My grandmother loved me very much and would have been mortified if she’d understood how ashamed she made me feel. – Anon Most strikingly, however, participants in Haga et al.’s study expressed a belief that the size of their bodies presented a barrier to them successfully accessing primary healthcare services, with many feeling that they were unable to fully express health concerns to their general practitioners because symptoms were brushed over, or immediately interpreted as side effects of obesity.36 Imagine a scenario in which an overweight patient attends clinic for a blood pressure check. The result is high, and if left untreated the patient is now in danger of future complications such as stroke, heart attack, aortic aneurysm, and vascular dementia.37

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Rather than dive in with ‘have you considered losing weight?’ there are multiple other factors to be considered, such as: •

Smoking status

•

Life stressors

•

Physical activity levels

•

High salt diet

It would be more helpful to consider the patient holistically and look at what is reasonable for them to change. Recommending smoking cessation (if necessary), and a lower salt diet, for example, provides manageable targets which have the potential to increase dietary quality, and health, overall. Similarly, an exploration of social stressors, and an emphasis on the importance of exercise as a method of boosting mood, may provide further channels of both communication and problem solving. Your patient can’t afford a gym membership? Free NHS apps such as ‘Couch to 5k’, or ‘Active 10’, 38 could be recommended, with the focus being on overall wellbeing/ improvement rather than ‘weight loss at all costs.’ A good example of this is seen in reports such as that of the treatment of English author, actress, and presenter Giovanna Fletcher, following the birth of her second child, Buddy, in 2016. At a routine postnatal check-up, only eleven days following the birth, the attending nurse remarked that ‘Mummy’s still got her tummy.’39 This comment proves shocking not only because it was ill-mannered, but also because it failed to take into account multiple other more significant factors – such as Giovanna’s feelings about being a new mother, her physical health following the birth, and the health and wellbeing of her then 11-day-old child. Indeed, Giovanna admitted that she ‘struggled’40 with her body image following giving birth and – while doubtless her practitioner had good intentions – the unnecessary focus on her weight was damaging to her self-esteem, and it can be argued that, rather than encouraging a healthy lifestyle, it served only to isolate her from feeling comfortable about expressing ongoing medical/health concerns. I think if the GP focused on health – actual health – it would be a lot easier for me to engage. For example, telling people to ‘lose weight’ as if it will automatically cure everything is pointless; however, what will help knee pain more than weight loss at all costs is a healthy lifestyle of which weight loss may be a side effect, but not necessarily. Focusing on what people have control over – movement, meal choices, balance, and not what they don’t (metabolism, genes, body type, etc) helps people feel empowered rather than shamed. – Anon The study of the arts and humanities within medical ethics should be viewed not as an optional extra. These subjects are of intrinsic value, being able to explore, contextualise, and develop practitioner skills of inquisition, empathy, and understanding and, as a direct result, communication.

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Dear Patient Relations, Firstly, may I say that up until today I have had nothing but positive experiences at Blacktumble Medical Practice. I am writing to relate my experience in an appointment at 8:45 am on 9 July 2022. At my doctor’s request, I attended an appointment with the nurse for bloods to check my thyroid level. This was a routine check due to a change in medication. At 9 am I was ushered into the treatment room by a nurse I have not met before, without introduction, and told ‘shoes off – let’s do your weight and height.’ I was confused, but complied, although as the appointment went on I felt it became more and more intrusive and uncomfortable. I had only expected to give a blood sample. The nurse was brusque in her questioning and when I indicated I felt uncomfortable she did not back down but pushed further. The nurse may have been more attuned to my discomfort if she had sat down and spoken to me, instead she buzzed about the treatment room asking questions. Here is my recollection of our conversation after height, weight, smoking, and alcohol checks: ‘I am here for bloods.’ ‘Here for bloods? Have you thought about losing weight?’ ‘Yes.’ ‘Oh! Right, what have you tried?’ ‘I don’t want to talk about this just now.’ ‘I can refer you to weight management clinic.’ ‘No thank you.’ (At this point she hasn’t introduced herself or looked me in the eye yet.) ‘Any history of heart disease in the family?’ ‘Yes, my dad died of a heart attack not that long ago,’ (She is ruffling about in a drawer.) ‘Sorry, what was that?’ ‘It doesn't matter.’ When I questioned the nurse about why she was focusing on my weight she looked at her file, smiled and said – ‘oh, yes, just bloods – I haven’t met you before.’ I left feeling sad, embarrassed, and ashamed. I have an ongoing medical plan with the GP, which is being monitored, and yes, my weight is part of that. I would be deterred from attending these appointments if I am to be routinely met with this kind of questioning. I have struggled with my weight since developing an underactive thyroid. I am keen to hear your thoughts on this and how the practice might avoid causing distress to me and other patients in the future.

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What steps might the practice/practitioner put in place to avoid similar interactions in future?

d. The Ethics of Persuasion As a healthcare practitioner, it is only natural that you will want the best for the patients under your care. To this end, wanting to persuade people to accept specific lifestyle changes, medications, or treatment options may seem natural – but is it always ethical to do so? Persuasion is obviously unethical when it stands to gain something for the persuader – which is known as coercive persuasion. Telling a patient to utilise a specific type of medication because you have a good relationship with the sales representative, for instance, rather than because it is the most suitable course of action for them, counts as what is often referred to as ‘respectable bribery.’ Indeed, in the UK, the Human Medicines Regulations (2012) were introduced as a measure to regulate the persuasive marketing techniques of pharmaceutical companies41 and ensure patients are offered balanced, impartial advice regarding their treatment options. But medical professionals will regularly meet patients who make decisions which run against their overall health or wellbeing – from poor lifestyle choices to denial of treatment – and coercive persuasion in these circumstances feels like a far cry from beneficent persuasion – persuasion toward good – for instance, persuading a cancer patient to accept potentially life-saving chemotherapy, or surgery. But when we consider that each individual patient we treat has a right to senses of power, bodily autonomy, and choice – where do the ethical lines blur? In 2010, Swindell et al. published a report in the Annals of Family Medicine which noted a recent shift in the way treatment options are decided. Rather than the traditional view of physicians making decisions based upon what they believed to be their patients’ best interests, ‘a new model of communication has evolved which places far greater emphasis on shared decision making. While clinicians now provide medical facts and occasionally recommendations, patients make the ultimate decisions.’42 With this in mind, your job evolves from that of a practitioner into one of an educator. It is your responsibility to ensure your patients are fully informed of all their treatment options, in order that they may then be able to make well-rounded and fully informed decisions. Indeed, ‘the basis of comprehensive informed consent rests with a recognition and respect for patient autonomy, transparency, selective emphasis, shared decision making, and beneficent persuasion’43 – that being persuasion which steers the patient toward the best long-term health outcomes. This is best done by provision of proper context. In order for this to be achievable, as Swindell et al. also point out, you, as the physician, must first be able to understand the nature of their pre-existing ideas and biases, and recognise when they may be inappropriately influencing not only your patients’, but also potentially your own, decision making.44

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For example, imagine a patient who has been putting off booking an appointment for a routine cervical smear test. There might be several reasons why someone would put off routine cervical screening – and they may not wish to open up to you about any of them specifically. In these circumstances, provision of proper context can ensure a wide selection of fears can be addressed passively, without the need for probing or uncomfortable questions; for instance, embarrassment, fear of pain, plain avoidance, or anxiety over test results. I’ve put my smear test off for years. It’s embarrassing, isn’t it? I don’t want a stranger looking at me like that. And what if I look different from everyone else? I had a friend who had a male nurse once, too – and I don’t know what I’d do if I walked in and that happened to me. I think I’d die of shame. – Anon In relation to the above instance, helpful reassurance could include the facts that that cervical screening clinics are held by predominantly female practitioners; that they are specific clinics and multiple women will attend in one day; that they are fast, and for the majority of people are painless; that they have the potential to identify changes in cervical cells which could lead to future cancers if left untreated. It is also worth noting that there are specialist clinics available for anyone who may feel uncomfortable attending for cervical screening; for example, the My Body Back Project is an all-female specialist service for women who have experienced sexual assault and CliniQ is a holistic sexual health and wellbeing service for all trans people, as well as their partners and friends.45 Unfortunately, given topics we have touched upon earlier – such as confirmation bias, preconceived ideas, or conspiracy beliefs – this can be an unreliable process, and many patients may still make decisions which you view to be incorrect; however, by providing appropriate context it might in some instances be possible (and appropriate) for you to re-channel their perceptions, and help guide your patients to achieve long-term health goals. It must always be remembered that a patient’s body is their own, and everyone responds differently to illness – and has different ideas of what it means to be well. Where you might personally choose one treatment option, to someone going through the experience itself that option might appear intolerable. Where informed decisions are made, and provided the patients involved have capacity to do so, their decisions must be respected and supported, and treatment decisions which run contradictory to your own opinions or recommendations should not be treated as a reflection upon your clinical competence. The following statements detail reluctance/avoidance of some routine medication, therapeutic, and investigative/preventative options. You should take this opportunity

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to think about any additional context you could provide to each patient, to better enable them to challenge preconceived ideas, reframe their thinking, and help provide them with the proper context with which to understand, process, and positively influence their decision making in relation to their ongoing health and wellbeing. Medication/Psychiatric Medication: ‘I don’t like taking medication anyway. I like my body to build up its own immunity to whatever it is that ails me. Then when it comes back again next year – like a cold or whatever – I’ll be better at fighting it. With antidepressants, I don’t want to become reliant on them to feel alright. I’d rather feel bad for a bit and then work on it to become better.’ Prostate Examination: ‘A prostate exam. Well … it’s intrusive isn’t it, I suppose. It’s embarrassing. And it could be nothing, so, y’know, I could go through all of that to find out nothing. I would much rather wait and see if my symptoms clear up on their own – most things generally do.’ Psychology/Talking Therapy: ‘It’s in the past isn’t it, it can’t affect you now so why drag things up? I don’t like to think about it. The thought of going through it with a stranger and having to tell them all my secrets fills me with a sense of dread. I don’t like the feeling that they’re judging me. Like they’re sat there thinking ‘for goodness’ sake, stop moaning and get on with it.’ I feel like I’m making too much out of small problems.’ e. Fake News – When Storytelling Cancels Science We have, by now, established that narrative – in myriad forms – holds powerful sway in terms of both individual and public understandings of health, and healthcare provision. The presentations of truth within the arts and sciences manifest in different ways – with science promoting objective facts, and the humanities favouring subjective interpretation. The contrasts between these narrative modes, when combined, are undoubtedly able to promote wellness. But when used incorrectly they may also counter scientific information – leading to the perpetuation of misinformation in the forms of propaganda, false narratives, and hoaxes, which shall be discussed here under the umbrella term ‘fake news.’ Fake news is a false or misleading narrative which is spread as fact – particularly across social media platforms. This is not a new phenomenon, however, and indeed the spread of fake news can be seen to be endemic throughout the history of written communication. Dr Bob Nicholson is a historian of nineteenth-century popular culture, with particular focus on the history of the Victorian media – including the viral circulation of jokes and other stories. He describes the spread of misinformation as being difficult to control due to not only the manner in which it circulates, but also irresponsible editing practices, and the difficulty individuals often have in verifying true information:

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Once a thing has been published, it takes on a life of its own. Publicly available information recirculates rapidly, and it soon spreads beyond the sight and control of its authors. Back in the nineteenth century, newspaper editors – armed with a pair of scissors and a pot of glue – would routinely cut out material from other publications and then paste it into their own. Within days, the most eye-catching snippets would begin circulating around the world, jumping rapidly from the pages of one paper to the next. This was a powerful way to share news, but rumours and misinformation moved through the same channels, and circulated just as rapidly. Editors often failed to credit the sources of their clippings, making it hard for readers to assess whether a story was true, or just a Victorian example of ‘fake news.’ Others would edit and amend their extracts, and so the content of a story could change as it moved from one publication to the next. All of these things continue to happen on the internet, but at an even greater scale and speed. The products of this process can often appear innocuous. For example, there is a quote, widely available online, which is incorrectly attributed to William Shakespeare: ‘When I saw you, I fell in love, and you smiled because you knew.’ Anyone who either reads Shakespeare, or is familiar with his work, will immediately sense that this attribution is false, and a little research will reveal that this is actually a translated quote from the 1893 Italian-language opera Falstaff – a lyrical comedy based on his plays The Merry Wives of Windsor and King Henry IV.46 But is there really any harm to be done in attributing this statement to Shakespeare? Probably not to the man himself. The problems begin when we consider that in allowing small misattributions, we open the door to the acceptance of bigger, more insidious chunks of misinformation. We have already discussed the effect personal narrative can have on the promotion of health information: testimonies providing individuals with first-hand, relatable accounts, which directly bring the experiences of others into view. This promotes the development of empathy, and emotional connection, also highlighting the maintenance of health as being a shared experience. However, a tremendous amount of information is available to us online – blogs, tweets, Facebook statuses, chain emails, and questionably researched ‘news’ sites. Our brains are simply unable to quantify and make sense of all this information, and so we fall back onto our cognitive biases. We pay attention to things we personally view as being ‘more risky,’ and when we consider these risks we openly prefer to receive information from people we know and trust. For example, someone who follows a specific diet may be preoccupied by the ingredients in a medication, as opposed to the risks associated with not taking

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such a preparation. They may as a result seek out alternative therapies and favour them above the recommended pharmacological treatments – despite them being less effective. Furthermore, when we discuss such topics amongst our peers, we are likely to conform to the views of others; if our peer group is anti-vaccination, for example, that is likely the stance we will decide to hold. Again, this serves a distinct evolutionary purpose. The individual who listens to the group about not going into the woods where the big bears live, for instance, has a greater chance of survival than the individual who does not; however, outside of its proper context, this predisposition to conformity can cloud our world view. The perpetuation of fake news is reliant upon the selective sharing of information, and the removal of proper context. The BMJ, for instance, in 2018, published a study into the effectiveness of parachute use. The study, entitled Parachute Use to Prevent Death and Major Trauma When Jumping from Aircraft: Randomized Controlled Trial, found that ‘parachute use did not significantly reduce death or major injury when jumping from aircraft.’47 When this result is shared out of context across social media platforms, this has the potential to become easily believable. This is, after all, the outcome of a professional study, led by experts in the field. Parachutes, then, are useless – a waste of time and money. However, when we look at the study in its entirety, we can see that ‘the trial was only able to enrol participants on small stationary aircraft on the ground’48 – rendering the results meaningless outside of their proper context. However, when we combine this lack of context with the sheer volume of information being shared on social media, we flounder. In the end, even when we go in search of high-quality information, our inability to view everything available to us comprehensively inevitably leads us to believing, and sharing, information which is often either partly or entirely untrue.49 Incorrectly held beliefs often become difficult to challenge, and this can be seen to relate to the heuristic of availability – or ‘the loudest voice is right.’ Essentially, we glean information about the world around us from the memories which leave the strongest emotional impressions. When we see a psychiatric patient commit a murder, for instance (either sensationalised on the news, or in fiction – such as Alfred Hitchcock’s character of Norman Bates), our brains associate the two factors: mental illness = danger. This leads to the formation of negative stereotypes. We might know nothing about mental illness and yet, because of the emotional associations we have formed, we incorrectly conclude that all psychiatric patients must be dangerous. Other examples include the lateness of trains, or the probability of air disasters – nobody ever talks about the services which run safely, or on time.50 A good example of this can be found in reactions to illness: My dad died, following an incredibly short battle with bowel cancer. I was 18 at the time, and the youngest of three sisters. When the consultant at the hospital told us there was nothing more they could do for him, we asked

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what had caused the cancer. The answer was that, due to his age and diet, it was very likely that red meat had played a role. I was already vegetarian and took the news with sadness, but without surprise. My oldest sister – who was married into a Turkish, heavily meat-eating family – openly laughed. To this day she refuses to accept any information about red meat as a carcinogen. – Anon Our brains see what they want to see. As we navigate our lives, we will select information which conforms to our beliefs about ourselves, other people, and the world we live in. This is known as confirmation bias. This can be easily demonstrated in terms of, for instance, a ghost tour. If you go onto a ghost tour already believing in the paranormal, the brush of cold air against your face inside the haunted house merely confirms your suspicions – ghosts are, undoubtedly, real. Go in as a sceptic, however, and you’re far more likely to notice the red light of an air conditioning unit, hidden behind a curtain. A consequence of confirmation bias is that we will often seek out information which confirms the beliefs we already hold. In the above testimony, the eldest sister had been eating red and processed meat with her family for years. There had been no immediate ill-effects to either herself or her children and, culturally, eating meat was a very important part of their family life. When, therefore, she was presented with a divergent belief surrounding an emotionally charged issue, the result was only that she became more committed to her original position.51 There is also the issue of correlation vs. causation. A connection between two events or variables, for instance, does not automatically mean that these two events or variables are related. Causation, rather, is the notion that one event, or variable, is responsible for the other. This is superbly illustrated by the following statement: The global lack of pirates is causing climate change.

Before you declare this statement nonsense – let’s examine the last 130 years of related history. Indeed, in doing so we can immediately determine that as the number of pirates in the world has decreased, global warming has in fact become steadily worse. The only reasonable and effective solution to the climate emergency, therefore – is surely to become a pirate.52 Of course, there is no link between these two variables. Rather, the associated information has been taken and presented out of its proper context. In terms of health information, this becomes particularly dangerous when we consider public responses to, for instance, vaccination, or alternative cancer treatments.

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In 2015/6, for example, veteran UK television personality Noel Edmonds related his experiences with prostate cancer, and widely promoted the idea that he had been cured not by medical treatment, but rather by a specialist, computerised yoga mat – an EMPpad – which he then went on to promote at a cost of £2,300 per device.53 Edmonds claimed the device was ‘a simple box that slows ageing, reduces pain, lifts depression and stress and tackles cancer. Yep, tackles cancer!’54 and while he was widely criticised by cancer patients and charities alike, it appears that he did not back down from these beliefs. Indeed, when challenged in an interview about his claims, Edmonds responded by stating ‘all I'm saying is, by using pulsed electromagnetism and a series of other things, I am now free of prostate cancer.’55 The key part of his statement, here, is ‘a series of other things,’ which, although unspecified, could reasonably have included medical interventions such as surgery, several types of radiotherapy, chemotherapy, hormone therapy, high-intensity focused ultrasound, cryotherapy, and steroids56 – to list only a few. It can be seen that Edmonds had used a combination of correlation vs. causation, alongside his cognitive bias, to confirm his already held beliefs, attributing his recovery not to the medical treatments he likely received, but rather – at least in his view – a more ‘natural,’ alternative therapy. There are, of course, serious risks associated with this belief, not only in terms of his own, ongoing health, but also to the wider public understanding of health – particularly given his wide media platform. Anxious cancer sufferers who hear his narrative may act out of desperation, for instance, and purchase an EMPpad rather than go and see their doctor. When presented with new information, it can be seen that a combination of both the heuristic of availability and cognitive bias come into play, alongside the phenomenon of correlation vs. causation. A good example of this combination can be seen in cases of vaccine hesitancy. The WHO defines vaccine hesitancy as being ‘the reluctance or refusal to vaccinate despite the availability of vaccines’57 and included it in a list of the ‘top ten’ threats to global health as of 2019. Vaccine hesitancy can be related to several factors, including lack of knowledge/understanding, false beliefs (including both scientific and religious beliefs), or the perpetuation of anti-vaccine misinformation.58 Vaccination is estimated to prevent somewhere between 2–3 million deaths per year, with the potential for a further 1.5 million deaths to be avoided if global coverage of vaccinations improved.59 In the UK alone, due to vaccination, deadly or debilitating diseases such as smallpox, polio, and tetanus have either been eradicated or are rarely seen, and instances of other diseases such as measles and diphtheria have been reduced by up to 99.9% since their vaccinations were introduced.60 Regardless of these statistics, there is a growing anti-vaccination movement (AntiVax) which, while having existed openly within our society for many years, has been

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highlighted by reactions to such topics as the measles, mumps, and rubella (MMR) controversy, and the Covid-19 vaccination rollout. A key event within the Anti-Vax movement can be seen to be the publication in The Lancet of a fraudulent medical study in 1998, entitled ‘Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children.’61 The research was quickly disproved, and the paper retracted, but the damage had unfortunately already been done – with swathes of parents either becoming wary of vaccination programmes, or steadfastly believing the false claims it had made: that the onset of behavioural symptoms within 66% of the children studied coincided with their receipt of the MMR vaccination, as well as the development of intestinal abnormalities (colitis).62 Once again, this is a case of correlation vs. causation. British children receive their MMR vaccination in their second year of life, which is an age when autism can typically manifest itself, and it therefore stands to reason that there will be a correlation – some cases of autism will indeed appear shortly after MMR vaccination.63 This is a result of pure chance, yet despite the lack of causative evidence a great deal of parental anxiety perpetuated, and MMR immunisation rates began to decline – which is extremely problematic when we consider that any decline in immunisation, or alteration to the combination of the MMR as a single administration, has the potential to dangerously affect the near elimination of measles and rubella in the UK.64 The aftershock has been prolonged, and the situation has not been helped by the tabloid media. In 2001, for instance, the Daily Mail ran the headline ‘MMR – the warnings ignored,’65 and detailed the case study of a 15-month-old boy who, on receipt of his MMR vaccination, went from a bubbly, bright, communicative toddler, to a withdrawn, unhappy child, with no language ability, and a predisposition to self-injury. While this narrative is anecdotal and, as discussed above, highly likely to be a case of misattributed correlation – it is important to note that the mother of this child – and, indeed, the parents of other children in multiple such anecdotes – was not lying in her recounting of her experience. Subjectively, parents who relate their experiences are seeking a cause for their children’s changes in behaviour and, understandably, have linked their narratives to the only external factor available for scrutiny – the receipt of a publicly mistrusted vaccination. As they recount their subjective truth – with, in their minds, the best intentions – to the general population they become superficially credible, and so the perpetuation of misinformation continues. As a result, vaccine hesitancy perpetuates and, in the case of MMR vaccine uptake, in the UK in 2019 it was seen that coverage of the MMR vaccine decreased to 91·2%, which was the fourth annual decline in a row, and the lowest level of MMR vaccination take-up since 2011–2012.66 In relation to the Covid-19 vaccination, the reaction can be seen to have been even more extreme, with completely false and unsubstantiated conspiracy theories running wild

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across social media platforms; for instance, that the vaccine includes a microchip, that the vaccine alters the recipient’s DNA, that the vaccine is causing Covid-19 variants and, perhaps most startlingly, that the vaccine has already led to a large number of deaths.67 While these may, when taken at face value, appear much harder to attribute credibility, Covid-19 conspiracy belief has been found to be related to such factors as subjective trust in scientific and governmental information sources, feelings of being subjectively informed about science, general conspiracy mindedness, and the frequency of using Twitter and messaging apps.68 However, it is possible to successfully challenge these misheld beliefs. A 2021 study performed by Cookson et al., for instance, found that people generally overestimate the conspiracy beliefs of others. For instance, an individual who believes microwaves cause stomach cancer will anticipate their peer group to hold the same belief, without prior discussion. There is, however, an association between these perceived in-group conspiracy beliefs and an individual’s personal conspiracy beliefs; essentially, an individual will want to conform to social norms. If an individual discovers that the majority of their peers do not conform to their beliefs – that their friends believe the use of microwaves to be harmless, for instance – there is the possibility that they will reform their opinions. Ergo, interactions which challenge conspiracy beliefs and misperceived social norms could be effective in reducing conspiracy beliefs, and the perpetuation of misinformation.69 Where non-existent dangers can be located, and these ideas perpetuated, it can also be seen that, conversely, many known dangers are ignored, for example dangers from poor diet, and recreational activity, for instance the use of sunbeds, smoking, alcohol use, and the consumption of red and processed meat. The links between smoking tobacco and lung cancer were first established in the 1950s, when ‘two large case–control studies demonstrated that smoking was “a cause, and an important cause” of lung cancer.’70 While, overall, the number of adults (16+) smoking in Great Britain has been steadily declining since 1974,71 despite 70 years of research showing overwhelmingly that smoking tobacco is one of the worst things a person can do in terms of their general and long-term health, as of 2019 there remained roughly 6.9 million adult cigarette smokers in the UK.72 While doubtless addiction does play an important part in this statistic, there are other significant factors at play; for instance, peer pressure, familial example/habit, or even defiance of authority. Many people view cigarette smoking as a means of coping with everyday stressors and as highlighted by Cancer Research UK, certain groups of the population are more likely to try a cigarette in the first place than others. These groups include people in deprived areas, people with mental health conditions, and the LGBTQ+ community.73 Imagine, for instance, a child – Jamie – who grows up in a deprived area. Both Jamie’s parents smoke, which normalises the behaviour from a young and impressionable age. This is reinforced as Jamie is regularly present when cigarettes are bought, and many of his friends’ parents also smoke. It’s not surprising, then, that Jamie and his peer group begin to smoke at high school.

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To reiterate, narrative – in myriad forms – holds powerful sway in terms of both individual and public understandings of health, and healthcare provision. While the sciences promote facts, the humanities favour interpretation, and the contrasts between these narrative modes, when combined, are undoubtedly able to promote wellness. As we discussed in Chapter 2, for an individual to either not understand, or misunderstand, something does not render them ignorant, or less educated than yourself. It only means that you have different interests, focuses, backgrounds, and life experiences. Whilst ‘fake news’ in the forms of propaganda, false narratives, and hoaxes can work against health and wellness, it is important that we understand the reasons behind the perpetuation of misheld beliefs in order that we are better able to combat them positively in our daily practice. f. The Telephone Game: When Storytelling Goes Wrong THE TELEPHONE GAME

Best played in groups of three or more, the Telephone Game is a popular British children’s game which highlights the ease at which information can become distorted. Sitting in a circle, Player 1 thinks of a sentence to whisper to Player 2 (generally, the more nonsensical the better). They must whisper this as softly as possible, and no repeats are allowed. Player 2 takes the information they have heard and must relay it to Player 3 – again, in as soft a whisper as they can – who in turn must relay to Player 4, and so on and so forth until all the players in the circle have heard the phrase. The final player then relays the information aloud to Player 1, to see how accurate the repetition of information has been.

Just as the spread of misinformation can be difficult to control, so too can information which becomes sensationalised – particularly when there is an emotional element to it. This is commonly seen in and around the reporting of issues such as late cancer diagnoses, eating disorders, and illness and treatment in children. The difficulty often comes at times where medical opinion goes against the wishes of patients, parents/guardians, and their wider friends and relatives, and – much like playing the Telephone Game – information can end up appearing vastly distorted to that which was originally imparted. As Dr Nicholson states, rumours and misinformation move through the same channels as legitimate news and circulate just as rapidly. On the Internet, this can happen at an even greater scale and speed and can cause serious damage in terms of not only understanding of public health, but also individual willingness to engage with service provision, and practitioner reputation. Despite the harm it can – and frequently does – ultimately inflict, media influence and frenzy which has been stirred up in the past can serve to teach us valuable lessons about our future practice.

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g. The Tabloid Press Tabloid newspapers are so-called because they have pages roughly half the size of a broadsheet newspaper which makes them, traditionally, easier to read on buses and trains – and so increased their popularity and circulation as a result. As a consequence, however, the space within their pages is limited, and as a result the journalism contained within them is often designed to be attention-grabbing, with sales and sensationalism being prioritised over balance and research. The presentation of body image in the tabloid media is, unquestionably, problematic. While issues of social media pose further issues, traditional tabloid journalism perpetuates a typically ‘pro-skinny’ agenda of body image, as well as often insensitive or anti-queer attitudes towards issues such as transgender reassignment surgery and gender identity. In 2019, for instance, an LGBTQ+ charity published research into newspaper coverage of transgender issues, which found that the British press had increased its coverage of stories about transgender people with notable intensity, writing roughly three and a half times as many articles in 2018–2019 as compared to 2012, and with the terminology used to discuss transgender people becoming increasingly negative; being described as having a tendency to be easily offended, to be involved in conflict or trouble, being demanding or aggressive, and being described in the context of crime.74 If left unchecked, such descriptions have the potential to cloud our view of an entire section of society. Do the tabloids consider that any defensiveness they face from the transgender community may be in direct response to their negative presentation: the senses of feeling undervalued, dehumanised, undermined, or of being personally attacked? The news we read and the stories we are presented with shape our view of the world around us, and damaging stereotypes can perpetuate as a result of unchecked tabloid media. For instance, the aftermath of Hurricane Katrina in 2005 left tens of thousands of people without homes – particularly in New Orleans and the surrounding area. But rather than focus on the overall human cost of the disaster, a large proportion of the tabloid media turned its focus to the publication of images of black individuals, whom they described as ‘looting,’ in the catastrophic wake of the storm. As a consequence, a study by James Johnson et al. found that these images encouraged harsh treatment of black evacuees and perpetuated the racial stereotype of black people as criminals.75 Further negative stereotypical beliefs can be found in the treatment of conditions such as eating disorders. While it is true that eating disorders (such as anorexia, or bulimia) are more common in women, media reporting can typically be seen to place an unbalanced focus on the female impact of such conditions. A 2020 ‘report’ in Page Six, for instance, focused on celebrities who had opened up about their experiences of living with an eating disorder – in which eleven of the twelve people

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listed were women.76 Furthermore, the way the female body is typically reported on in general promotes a view of idealised thinness – even in instances where eating disorders are known about. Take the experiences of Nikki Grahame, for example. A contestant on the UK television show Big Brother in 2006, Nikki went on to become a television personality and model, whose struggles as an anorexia sufferer were widely known. Nevertheless, a 2006 report in The Guardian entitled ‘The Lovely Bones,’ by journalist Emily Wilson offered the following description of the then-24-year-old: Nikki Grahame … does have very skinny thighs. There is hardly an ounce of fat on them. Nor on her little boy bum, which has been on show ever since she arrived in the BB house in a bunny-girl outfit which showed off a scoop of each of her tiny buttocks. Not for Nikki the indignity of unfashionably wobbly lady bits.77 Despite going on to discuss the fact that ‘the kind of skinny she [Nikki] models on television every day is rapidly becoming the celebrity standard – and that ends up messing with everyone's heads,’78 as well as the worrying trend in ‘pro-anorexia’ content available online, the article can be argued to be damaging in several ways – not least to Nikki herself. Anorexia is widely regarded as the deadliest psychiatric illness,79 and it has been found that stigma and the perpetuation of negative societal attitudes are detrimental to the mental health and wellbeing of many individuals who are suffering from an eating disorder generally. Stigmatising language therefore often constructs barriers to individuals feeling able to access support, prolongs eating disorder recovery times, and furthermore can be seen to increase the likelihood of relapse.80 The pro-thin descriptions of Nikki as having a ‘little boy bum,’ being ‘tiny’ and then, conversely, her appearance having the effect of ‘messing with everyone’s heads’ had the potential to perpetuate both her negative body image, and also her sense of stigma and self-worth. Nikki Grahame sadly died of her condition in April 2021, at the age of 38. Such reporting constructs eating disorders as a typically female complaint, and the numbers of men who suffer from eating disorders are marginalised as a result. Indeed, the estimated numbers of male eating disorder sufferers is typically considered to be a significant underestimation81 – and if you remain ignorant to facts such as this it is easy for negative stereotypical views and misheld beliefs to adversely affect your medical practice. A high-profile example can be found in the experiences of former international cricketer Freddie Flintoff MBE. In his 2005 autobiography Being Freddie: My Story So Far, Freddie describes his struggles with his weight, and his treatment by the press and tabloid media throughout his career as a professional sportsman: The newspapers called me all sorts of things – I was a porker, a fat slogger, you name it. It was a very low period in my life … I was supposed to be

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wearing a girdle around this time to help with my back, but that made me look even bigger, so I stopped wearing it because I was so paranoid about my size. 82 As detailed above, Flintoff began actively avoiding recommended medical treatments due to the stigma associated with his public body image – but the perpetuation of stereotypical views also began to affect the medical treatment offered to him, as he revealed in 2020, in a powerful BBC documentary detailing struggles with bulimia – Freddie Flintoff: Living With Bulimia. The only time I came close to asking for professional help was when I was still playing cricket … we had a team meeting before a series with England and there was a dietician … I decided halfway through, today’s the day, I’m going to tell her. Then she said she worked with a lot of female Olympians and a lot of them have eating disorders – but ‘there would be none of that in this room will there?’ And I just thought ‘cheers’ and I just carried on. 83 Stereotypical beliefs and misheld views are dangerous and can serve to alienate the individuals you are trying to help. In order to avoid being influenced by stereotypes, it is not enough to merely avoid engaging with tabloid and sensationalist journalism for news, or entertainment. Indeed, it is impossible to avoid tabloid media completely, as our online newsfeeds and social interactions frequently reference such material passively – our brains viewing and absorbing material without any conscious effort on our part. It is therefore vital that we are able to recognise negative depictions of individuals and minority groups, identify stereotypical views, and enable ourselves to make informed decisions based on truth and balance. One of the best ways to achieve this is by deliberately exposing ourselves to more diverse representations – something which is so easily achieved by engaging with the arts and humanities. h. Children in the Media How do we define childhood? Specifically – at what point does childhood stop and adulthood begin? Furthermore, at what point do we as a society phase in more adult considerations – such as driving a car, consenting to sex, or having the ability to vote? The answers are subjective. Childhood means different things to different people, and different cultures, and every individual will grow and develop at different rates depending upon multiple, often external factors, for instance life experiences, and childhood responsibilities. In the UK, for instance, the Children’s Society estimates that there are around 800,000 young carers in the UK aged 5–17 years.84 It is a reasonable assumption that a child who has grown up with caring responsibilities will mature societally faster (being able to prioritise daily tasks, use household appliances, etc.) than a child who does not.

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Childhood is a social construction – meaning that the ideas we have about childhood are formed by the society we live in, rather than by chronological age. These ideas are, by default, open to interpretation; for example, in Tonga, it is believed that social competence can only be achieved through discipline, and children are treated in ways which have seemed very harsh to outsiders. In contrast, the Inuit of the Canadian Arctic treat their children with a great deal of tolerance and leniency, as they believe they are yet to develop the power of reasoned thought.85 In modern Britain, children are widely viewed as being dependent, naïve, innocent, vulnerable, and in need of protection.86 Anthropologist Martin P. J. Edwardes outlines that human children are unusual in that they are born helpless – in ways which would ensure the extinction of a less social species. Our society is our defence. A human infant, in comparison to myriad other primate species, requires a phenomenal level of support and input in the early years of life and, as adults, we have therefore evolved a willingness to meet these support needs and ensure the safety and successful upbringing of the next generation.87 Psychologist Mihaly Csikszentmihalyi goes one further, stating in his 1993 paper Contexts of Optimal Growth in Childhood that: There are few things we claim to value more than our children. They are our most cherished resource; they represent the future; they justify the hardships of everyday life … to an extent we rarely realize, it is children that give meaning to adult life. No community could survive without this link to the future, which gives stability and purpose to the energies of its members. 88 While for many people having children is a wonderfully fulfilling, sought-after experience – this is now, undoubtedly, an outdated opinion. In the UK, record numbers of women are reaching the age of 30 without children, and more than half (50.1%) of women in England and Wales born in 1990 were child-free when they turned 30 in 2020.89 The reasons for this shift include social, professional, and financial considerations, as well as the key fact that an individual can lead a happy and fulfilled life without having children. I’m sick of people asking me when I will have a child. On the flip side, a friend of mine has recently been turned down for IVF and is struggling with people asking her. She feels ashamed because she feels it’s her weight holding her back. People are never happy. From the moment you start going out with someone they want to know when you’ll move in together, then it’s the race to get a house, get married, have children. It makes you feel like your life isn’t worth anything unless you have a family. – Anon

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Bronagh Loughlin, writing for The Irish Times in 2017, noted the differences in response garnered by women and men when they state that they don’t wish to become parents: The conversation [at a dinner party] is about children … when it’s my turn to answer [questions], I’m not excited. I’m a 20-year-old journalism student in my second year of college. My whole life is ahead of me. ‘So how many children do you want?’ I respond ‘None.’ The whole room goes quiet and awkward, until someone chimes in, ‘You are young though, you will want them in the future.’ The next person is asked the same question, he is a man, he also says he does not want children, but this time there is no awkward silence, they accept his answer and move on.90 There are multiple works which can provide insight into the experiences of pregnancy, childbirth, and parenthood from a wide variety of perspectives – both true-life, and fictitious. For example, Jennifer Worth’s Tales From a Midwife (2010) presents a memoir of midwifery and motherhood in the 1950s, which has been described as detailing the perspectives of individuals such as ‘terrified teens at full term … [and] abortions … [with Worth’s] compassion and anger driv[ing] the shock and gore.’91 Shock and gore might seem a strange thing to seek out in relation to healthcare perspectives – but, for many people, the processes of pregnancy and childbirth can be daunting experiences both physically and psychologically. Furthermore, dystopian works such as Margaret Atwood’s The Handmaid’s Tale (1985) – while detailing extreme themes – explores the ideas of subordinate women in a patriarchal society, as well as loss of wider female agency, and personal individuality. Both Worth and Atwood’s works have also been produced as successful television adaptations. For a more light-hearted insight, works such as Roald Dahl’s Danny, Champion of the World – which focuses on the main character, Danny, and his relationship with his father, William – present a humorous, idealised view of the bonds formed between children and their parents. Whether you choose to partake in fact or fiction, engagement with such works can help you avoid making damaging assumptions about your patients. I’ve suffered with bad acne since my teenage years, and a few years ago I was referred to a dermatologist. She recommended I try a drug that needed me to have routine blood tests every month, which I declined. I don’t want to put something into my body that could cause bigger problems for an issue which is essentially cosmetic. The dermatologist scoffed at me, told me to come back once I’d ‘had children, and could tolerate blood tests,’ and discharged me without further discussion. I went into the toilets and cried – because all my pregnancies have resulted in miscarriage. – Anon Furthermore, the impact on issues such as infertility and miscarriage have on men, or non-pregnant partners, is often overlooked.

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I felt ignored. When we found out there wasn’t a heartbeat, my wife was offered counselling, and I sat in the corner while a nurse went through her options. Wait for a natural miscarriage or have a surgery. This child I had wanted so badly was now a medical problem to be solved. I was expected to just deal with it and be there for her emotionally – who was there for me? – Anon In 2021, Welsh comedian Rhod Gilbert presented a BBC documentary special entitled Rhod Gilbert: Stand Up to Infertility, detailing the causes and traumas of male infertility. In the show, Gilbert highlights that although around 50% of all fertility issues are male, the £400 million a year UK fertility business is aimed almost exclusively at women. He also meets with other individuals who have experienced fertility issues, such as writer and performance poet Benjamin Zephaniah, and a man whose wife had eight years of treatment before they discovered that he was the one with the fertility issues.92 Gilbert went on to start the HIMfertility campaign, which aims to encourage men to talk about infertility problems: I started the HIMfertility campaign after my wife and I had issues trying to conceive. The experiences we had while exploring fertility issues showed me just how little support and understanding there is around male infertility. I wanted to encourage men to open up and talk about the issue and, most importantly, to get the right support.93 This is an example of Gilbert using his media platform and status to raise awareness of an overlooked medical concern, with the aim of increasing discussion, research, and understanding. Indeed, there is no escaping the fact that, for many people, what they understand about public health, medicine, and disease they have learned via popular media. Indeed, with the growth of popular media comes the ability to reach a wide variety of audiences of differing classes and backgrounds in unprecedented ways.94 But this ability is often difficult to control, even when utilised with good intentions. Decisions made about life support for children or babies – be those decisions life saving, or life ending – are joint decisions, involving not only physicians and healthcare workers, but also family members – and these decisions are never made lightly. As discussed by medical ethicists Dominic Wilkinson and Julian Savulescu, conflict and disagreement are not natural, inevitable, or even usual parts of end-oflife decision making for children and, in most cases, difficult conclusions are able to be reached with the agreement of all of those involved in caring for the child – both professionally and familially.95 This is sadly, however, not always the case and, in cases where families and medical professionals have disagreed, things have often been further complicated by the presence and input of both well-meaning outsiders, and more ill-natured (or simply

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badly thought-out) journalism/popular media reporting. As already discussed, just as the spread of misinformation can be insidious, so too can information which becomes sensationalised – particularly when there is an emotional element to it. When it comes to the treatment of children – regardless of an individual’s personal desire to have or not have a child of their own – emotions can often run high. Information reported by journalism/popular media often has the potential to end up appearing vastly distorted to that which was originally imparted. This is not always to say that the media reporting has been broadcast/published with ill-intent. People who pursue careers in journalism doubtlessly experience the same levels of passion and pride in their careers as anyone else. Nevertheless, over recent years, there have been several high-profile legal battles involving children, their parents, and their medical teams, and the distortion of medical information within the media can prove highly detrimental to all parties involved. Amongst these cases, two of the most well-known names are those of Charlie Gard and Alfie Evans. i. Charlie Gard Born in London on 4 August 2016, Charlie Gard suffered from an extremely rare genetic disorder known as Mitochondrial DNA Depletion Syndrome (MDDS). While both the symptoms and the severity of this condition vary from case to case, clinical features of MDDS can include progressive muscle weakness, seizures, stroke-like episodes, movement disorders, and developmental delay, and the condition is often fatal if developed within the early years of life.96 Initially, it was agreed that Charlie be treated with experimental nucleoside therapy at London’s Great Ormond Street Hospital, overseen by a US physician named Prof. Michio Hirano. Following further seizure activity, however, Charlie’s physicians at Great Ormond Street voiced their belief that the treatment would not be beneficial to Charlie, but rather would serve only to prolong his suffering. At that stage, Charlie was unable to move, or breathe unassisted, having suffered extensive brain damage. As such, Charlie’s medical team recommended that he should be allowed to die with dignity. Charlie’s parents – Christopher Gard and Constance Yates – however, were still advocating for nucleoside therapy, expressing their belief that there was a chance that the highly experimental treatment might improve his condition.97 Charlie’s undoubtedly tragic circumstances attracted global media attention, as his parents and physicians failed to come to an agreement with regard to his future treatment. Throughout the proceeding weeks, the relationship between Charlie’s parents and his doctors broke down, and his parents launched a legal fight. Notable public figures weighed into the debate surrounding Charlie’s case – including Donald Trump and the Pope – with Trump’s lawyer Jay Sekulow tweeting on 3 July 2017 that ‘I have contacted my office in Strasbourg, France to intervene in support of baby #CharlieGard’s family. We must always fight for life,’98 and the Vatican releasing

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an official statement from Pope Francis, noting his belief that Charlie’s parents should be allowed to ‘accompany and treat their child until the end.’99 The resulting outpouring of sympathy and affection from the general public generated by media attention was successful in raising over £1.2 million in funding to enable Charlie to be taken to America, to continue his treatment there.100 But, to again quote Pope Francis – at what point do we deem it to be ‘the end?’ It can be seen that much of the media reporting greatly distorted the facts in Charlie’s case and, if left unchecked, this ability to distort information – and influence popular opinion – can be dangerous. For instance, while the publicity around Charlie’s case was incredibly beneficial in terms of securing medical funding – the funding was never an issue. Imagine having an elephant in a (very big) box. You let four people put their hand inside the box for 20 seconds each, to guess what’s inside. The first person grabs hold of the elephant’s trunk, and confidently declares the contents to be a snake. The second person touches the elephant’s ear and puts forward their guess that inside the box is a giant roll of leather. The third person touches the elephant’s side and guesses rhinoceros. The fourth person simply opens the box and looks inside and – being able to see the whole picture – correctly guesses ‘elephant.’ The ideas of information literacy (the ability to take information and make balanced judgements) and critical thinking (the analysis and evaluation of information) are extremely pertinent here. While these skills are important in any sphere, they are vital in the consideration of media-reported healthcare information. When we are presented with new information, we can see it as our brains doing a jigsaw puzzle – which pieces fit together, how the emerging picture influences our understanding of the situation, and which pieces simply do not fit. The more information your brain has, and the more logically you can piece things together, the easier it will be to complete the jigsaw. Try to build around a distorted piece, which doesn’t fit, and the end picture will never be fully correct. The public understanding of Charlie’s case at the time was that the NHS was not willing to fund his experimental treatment in the UK – but, in fact, Great Ormond Street had stated that if the treatment was deemed suitable, it could have been funded on a compassionate basis in the UK.101 The public, then, were building their image of Charlie’s case around a distorted piece of the puzzle – a single part of a very big elephant – and never getting the full picture of true events. Furthermore, as stated by Hrushikesh Vyas, writing for NHS Hot Topics in 2019: The impact of the media on professional decision making must also be considered. Knowing how closely the world was following this case must place an immense amount of pressure on those at the helm of our judicial system. Though trained to be impartial, one must be aware that a ruling in a

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case such as this will set precedent for future cases and also influence global perceptions on our healthcare and judicial system.102 The media reporting surrounding Charlie’s case – for example, arguably unnecessary descriptions of his distressed father’s outburst at a highly emotive court hearing103 – led to thousands of abusive messages, including death threats, being sent to Great Ormond Street staff, with many also facing abuse in the street, along with unrelated individuals and families visiting their own sick children.104 In 2017, Prof. Ranjana Das, at the University of Surrey, analysed the persuasive strategies employed by the social media campaign surrounding Charlie Gard, identifying the enablement of misunderstanding of both law and science, and as a direct result the allowance of the rapid rejection of evidence-based debate – to be replaced with emotive, heightened responses. Furthermore, in the wake of the case of Alfie Evans, Das highlighted input from religious groups who sought to reframe and misrepresent the debate as being one of a battle between parents and state bodies, noting that scientific/medical expertise and evidence were repeatedly rejected in favour of anecdotes, emotive rhetoric, misinformation, trolling (the act of being intentionally antagonistic), fake news, and very clear gaps in critical literacy with all media, including social media.105 As discussed above, decisions made around life support options for children are never made lightly. As also noted by Wilkinson and Savulescu, in the UK, between two thirds and three quarters of hospital-based child/infant deaths follow decisions to either stop life support or not to attempt resuscitation.106 There are multiple considerations taken into account by physicians and medical teams when discussing the ongoing treatment of children, and whether or not the continuing nature of treatment is appropriate is relative to multiple factors. Largely, however, the balancing point is found at the juncture where it is considered that continuing medical treatment, or trying to resuscitate, would not help – or would do more harm than good. A running consideration in medicine – in all its forms and specialities – is that of quality vs. quantity. For example, a patient with a terminal cancer diagnosis may be considered for palliative chemotherapy; however, there is a fine balance to be struck. Palliative chemotherapy may increase life expectancy by (for example) two to three months – but the side effects of the treatment itself may render those months unbearable for the patient. It may therefore be considered better that quality of life – being able to enjoy the remaining weeks/months engaging in enjoyable activities with family and friends – overrides the potential for life-extending treatment. But what constitutes quality is often incredibly subjective. Steven Stewart works as a paralegal in one of the UK’s top law firms. He holds an Undergraduate degree in Law and a Master’s in International Justice and Human Rights:

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I was born with a condition called Osteogenesis Imperfecta (brittle bones). I have a severe form of the condition which meant that through the simple act of being born I had two broken arms, two broken legs, and a couple of broken ribs. Growing up with this condition, spending my life in and out of hospital as a child, I heard the phrase ‘quality of life’ quite a lot. This was mostly in relation to advice on surgery, or treating the various fractures. The natural tendency I think of most parents of children with this kind of condition would be to wrap their kids up in cotton wool and watch their every move. Indeed, that was often the advice of doctors, but early on I was taught to be very different. My own independence was encouraged to me by my parents from a very young age, the mentality that despite all the breaks and the pain, I should never just run away from trying something for the first time. It’s not always advisable, but in my opinion a doctor’s advice is mostly always erring on the side of caution. My own independence now as an adult is such that I am completely self-reliant, I have friends and relationships where I don't have to rely on their abilities or understanding of helping with my disability. Quality of life to me now is based on the relationships and interactions that I have with people and the wider world, and which isn’t entirely defined by the limitations of my disability. But I know it’s different for everyone. Having attended a Special Needs school in my childhood, I was friends with children with disabilities that can only be described as ‘severe.’ They were completely dependent on those around them, but they forged their own relationships, found their own enjoyment in the smaller things in life. They had a quality of life because they were able to experience life and find joy in their own individual ways. Doctors, as essential as they are and as important as their advice is, tend to look at the idea of quality of life from an objective purely medical point of view, whereas based on my own experience, a quality of life can be found in the simplest of things. Many clinicians and adults are prepared to accept that some compromise to quality of life is inevitable during the early stages of treatment but feel more uncomfortable if this continues beyond the initial diagnosis. As we interact with our patients and their families, and become more informed about their thoughts, feelings, and opinions, in relation to both chronic and acute conditions we have to acknowledge the implications that can have a significant impact on many aspects of life107 – but the answers are not ‘one size fits all.’ Following a further review of Charlie’s brain scans by Prof. Hirano, it was determined that it was by that stage too late for treatment to be beneficial, and the legal case to have him relocated to America was dropped. Charlie was moved to a hospice following a High Court ruling, and sadly passed away on 28 July 2017 aged 11 months.108 Charlie’s parents went on to start the Charlie Gard Foundation, aiming to support children, adults, and families who have been affected by mitochondrial disease.

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Notably, during a legal proceeding in the Family Division of the High Court in London, an email communication was made public, in which an unidentified physician involved in Charlie’s case had stated to a colleague that ‘the spanner in the works has been a parent-driven exploration of all alternatives internationally,’ and it was questioned whether this was an appropriate manner in which to discuss Charlie and his parents’ case.109 The idiom ‘to throw a spanner in the works’ is defined as meaning to cause something to not go as planned,110 and promoted widespread outrage as its use in this context could incorrectly suggest that Charlie’s death had been prioritised over potential treatment options from the outset. While this email was never intended to be seen by Charlie’s parents, it is nevertheless an excellent example of the dangers of written communication when incorrectly executed. Doctors have a duty of transparency and must be open and honest about their clinical decisions, and practices. As discussed earlier, care should be taken when putting words to paper. While this statement was made informally, medical information is often more suited to formal presentation. Furthermore, the manner of expression used did little to highlight Charlie’s status as an individual – rather, feeling cold and disconnected – and it is obvious that the statement was written under the influence of frustration by the speaking practitioner. Indeed, there is a strong argument to be made here for the necessity of professional support systems, and the ability of colleagues to speak freely amongst themselves in times of stressful or distressing situations. In court, the physician in question readily admitted that the turn of phrase had been ‘a bit clumsy,’ but also stated that they were ‘trying to suggest that our previous decision to take this to the court as urgently as we could was being held up by something being explored that needed to be explored.’ Furthermore, the doctor added that a clinical meeting around Charlie’s ongoing treatment had been ‘one of the most distressing ethics committee meetings we have had.’111 To mitigate the risks of such scenarios occurring, in circumstances such as this, it would be helpful when writing patient-related information to consider the following: 1. Is it necessary? 2. Is it kind? 3. How would it make you feel? Health practitioners are only human. Mistakes can be made, and things can be said, which may cause unintentional damage, born from frustration, anger, or heightened emotion. The damage, here, had been caused due to poor communication born from heightened emotion on both sides. Indeed, in a statement released in November 2020, Christopher Gard stated that: Ultimately, when we disagreed with doctors and the hospital over the best course of treatment for Charlie, the communication between us broke down.

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We were left isolated, without mediation nor access to an independent medical ethics committee. The only option left was to be taken to court and lose out on what precious time we did have with Charlie.112 The widespread media input had the potential to be detrimental not only to the reputation of Great Ormond Street and its staff, but also to Charlie, his parents, and future patients and their families. Speaking after Charlie’s death, an anonymous statement was made by one of his clinicians, writing in The Guardian, in which they detailed the worry which had been caused to the parents of other children, who were now left to question whether the doctors in the intensive care unit truly had their children’s best interests at heart. Charlie, the medic said, had effectively been kept alive for people such as Donald Trump and the Pope, who ‘suddenly knew more about mitochondrial diseases than our expert consultants.’113 Over the last few weeks, parts of the media and some members of the public have turned a poorly baby’s life into a soap opera, into a hot legal issue being discussed around the world. The case has also had an effect on other families here. Parents … worry that we might not do the right thing for their child. That worry is not based on the care we are giving; it’s based on what … [people] have been saying about medical staff … [they] have never met.114 But what can be done to mitigate these risks? Being able to successfully communicate – with not only knowledge and authority, but also understanding, compassion, and empathy – is vital.

‘The spanner in the works has been a parent-driven exploration of all ­alternatives internationally’

1. In the above statement, for what reasons could it have been necessary and appropriate for the doctor in question to highlight to a colleague the delay in end-of-life care-planning for Charlie? 2. Was the use of the idiom ‘spanner in the works’ as kind as it could have been? 3. If you were the parent, carer, or patient – how would you feel to be referred to in such a manner – regardless of practitioner intent? 4. How could this communication have been reworded?

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ii. Alfie Evans Similar to Charlie, born in Liverpool on 9 May 2016, Alfie Evans suffered from a genetic neurological disorder known as GABA-transaminase deficiency. This disorder results in seizures, uncontrolled limb movements, exaggerated reflexes, weak muscle tone, and excessive sleepiness. Children with GABA-transaminase deficiency have profoundly impaired development, with most not surviving past the first two years of life.115 In many respects, Alfie’s story is similar to Charlie’s. Following his admission to Alder Hey Children's NHS Foundation Trust, Alfie’s parents – Tom Evans and Kate James – disagreed with the recommendations made by his medical team, who believed no more could be done for Alfie, and recommended withdrawing treatment. Evans and James, however, were keen to explore further treatment options – again with US neurologist Prof. Michio Hirano – and went on to argue passionately that they should be allowed to move their son to a specialist children's hospital in Italy – the Bambino Gesú Hospital in Rome.116 Indeed, Alfie was even granted Italian citizenship, with Tom Evans suggesting at that time that British medical authorities no longer held influence, as Alfie ‘belonged’ to Italy.117 Alfie’s parents’ admirable efforts to advocate treatment for their son exhausted every legal avenue in the UK, losing cases in the High Court, the Court of Appeal, and had their case rejected by the Supreme Court, as well as the European Court of Human Rights.118 Evans even threatened to take out a private murder prosecution against doctors the treating his son.119 The reactions of both Alfie and Charlie’s parents in these situations is not up for scrutiny. We could take an in-depth look at the biochemical reactions of parenthood, the genetic and social factors – or the instincts human beings share with other mammalian parents – but is that really necessary? It is an understandable – and logical – response, to want to protect one’s children. The major problems with the cases of both Gard and Evans did not lie with their parents, nor their medical staff, as both were acting with what they believed to be the children’s best interests at heart. Rather, as we have already seen in Charlie’s case, the manner in which the media grasped these stories, and reported on them, had the potential to cause significant harm to all involved. The public discourse around these and other, similar cases, is set up in an adversarial manner – parents/supporters vs. medics – although that’s a grotesque oversimplification of a complex situation. Essentially, though, the reporting of these events always characterises the hospital/ physicians as aloof, and unfeeling, and invests the parents/supporters with emotive power. David against Goliath – a tactic most often intended to sell newspapers, not promote health.

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As publicity around Alfie’s case grew, hundreds of well-wishers united to provide support to his family, eventually being dubbed ‘Alfie’s Army’ by the media. On 13 April 2018, hundreds of these supporters staged a protest outside Alder Hey Children’s Hospital, with visitors to the hospital describing the atmosphere as ‘intimidating and scary,’ with the hospital itself saying that noise from protestors, including the sounding of car horns, was affecting its patients and staff – with even chants of ‘burn it down’ being heard from the gathered crowd.120 Iain Brassington, senior lecturer in at the Centre for Social Ethics and Policy at the University of Manchester, wrote the following in the BMJ in April 2018: My worry here is that … a child [is] being bounced around to satisfy the desires of a number of adults, most of whom have nothing at all to do with him beyond membership of a couple of Facebook groups … with a threatening undertone. It’s horrible, irrational, indefensible … [But] even their protests have something at their core that is not wholly without merit. These are people who do care, notwithstanding that they’re showing it in a deeply counterproductive way.’121 It is this duality of human nature which Brassington comments on – the ‘something at their core’ – that it is important for us to see – and having an awareness of an individual’s inner motivations is a fantastic way to temper your own emotional responses, and maintain a professional relationship, and rapport. That is not to say, of course, that it is ever acceptable to experience or tolerate abuse, and it goes without saying that violence against medical practitioners is never acceptable. In January 2020, a BMA survey found that: 43% of 602 doctors were concerned about physical violence and verbal abuse from patients at work, 32% of 602 doctors believed that incidents of violence or verbal abuse had increased in the past year, [and] 43% of 644 doctors saw physical violence or verbal abuse towards colleagues.122 These statistics are unacceptable, and health boards have a duty of care toward staff to ensure a safe and comfortable working environment. The BMJ recommends that, to this end, employers teach staff how to react to or calm down those who are being abusive.123 Practitioners themselves are encouraged to report incidents and be up to date on local support measures – but no mitigating recommendations are made – for example, the prioritisation of the establishment of rapport. To this end, and to take a look back to Glasser’s Choice Theory, we can see that individuals are motivated by the desire to increase pleasure and decrease pain. A

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natural response to such comments and protests such as those which surrounded the cases of Gard and Evans would be to become professionally distant and appear cold and detached from the situations and tasks at hand as a matter of self-preservation. But being able to look at the motivations behind a group or an individual’s actions provides you with deeper insight into how and why people behave the way they do, allows you to empathise, and has the potential to allow the maintenance of good, open channels of communication even when emotions are running high. The scenario causing pain for many individuals was a lack of understanding about the facts in terribly tragic cases – being able to remain calm, professional, and serve as an educator and advisor by means of clear, empathetic discussion is often the best tool in your kit. A perspective not often considered in cases such as these is the impact of the media frenzy if relatives and caregivers wish to re-engage in conversation with services – and the potential for peer pressure to impact ongoing decision making. We more usually associate peer pressure as being an adolescent concern – a factor in why teenagers may try alcohol, cigarettes, or stay out past a curfew. It is the influence, expectation, and pressure to behave in a manner expected of you by your peers. What pressure, then, could people experience from crowds of ‘supporters’ gathered outside the hospital building? Establishing rapport is the easiest way to ensure an individual’s needs are met – and even in cases where rapport breaks down, sometimes to significant degrees, by ensuring you maintain an openness to further discussion you make it more likely an individual will feel able to engage with you in the future, should they wish to do so. NOTES 1 Raanan Gillon, ‘Defending the four principles approach as a good basis for good medical practice and therefore for good medical ethics’, Journal of Medical Ethics, 41.1 (2015), 111–116 [accessed 2 June 2022] 2 NHS, Combined pill (2020) [accessed 2 June 2022] 3 NHS, Combined pill 4 NSPCC Learning, Gillick competency and Fraser guidelines (2020) [accessed 2 June 2022] 5 National Center for Biotechnology Information, Psilocybine (2022) [accessed 3 June 2022] 6 Robin Carhart-Harris, Bruna Giribaldi, Rosalind Watts, Michelle Baker-Jones, Ashleigh Murphy-Beiner, Roberta Murphy, Jonny Martell, Allan Blemings, David Erritzoe, and David J. Nutt, ‘Trial of psilocybin versus escitalopram for depression’, New England Journal of Medicine, 384 (2021), 1402–1411 [accessed 3 June 2022] 7 NHS Health Research Authority, Researching magic mushrooms – When ethics and law collide (2021) [accessed 3 June 2022]

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8 Bheatrix Bienemann et al., ‘Self-reported negative outcomes of psilocybin users: A quantitative textual analysis’, PloS One, 15.2 (2020), e0229067 9 Raanan Gillon, ‘Defending the four principles approach as a good basis for good medical practice and therefore for good medical ethics’ 10 C. Cowley, ‘The dangers of medical ethics’, Journal of Medical Ethics, 31 (2005), 739– 742 [accessed 2 June 2022] 11 Science Museum, A Victorian mental asylum (2018) [accessed 3 June 2022] 12 BBC News, Ashya King: Missing boy’s ‘life is in danger’ (2014) [accessed 3 June 2022] 13 Aidan O’Brien, and Daniel K. Sokol, ‘Lessons from the Ashya King case’, BMJ, 349. g5563 (2014) [accessed 3 June 2022] 14 Nadia Khomami, and Jamie Doward, Parents arrested as missing Ashya King found by police in Spain (2014) [accessed 3 June 2022] 15 Lamiat Sabin, Ashya King: Five-year-old boy free of cancer after family flees Britain for proton therapy (2015) [accessed 3 June 2022] 16 NHS England, Proton beam therapy (2022) [accessed 3 June 2022] 17 Charlotte Perkins Stetson, The yellow wallpaper (1892), p. 651 [accessed 13 June 2022] 18 Stetson, The yellow wallpaper 19 Stetson, The yellow wallpaper 20 The Ethics of Suicide Digital Archive, Charlotte Perkins Gilman (1860–1935) (2015)

[accessed 13 June 2022] 21 Sally Spencer-Thomas, Language matters: Why we don’t say "committed suicide" (2021) [accessed 13 June 2022] 22 Graham Stokes, And still the music plays: Stories of people with dementia, 2nd edn (London: Hawker Publications Ltd, 2010), p. blurb 23 Stanford Encyclopedia of Philosophy, Deontological ethics (2020) [accessed 6 June 2022] 24 Stanford Encyclopedia of Philosophy, Consequentialism (2020) [accessed 6 June 2022] 25 Ben Kotzee, Agnieszka Ignatowicz, and Hywel Thomas, ‘Virtue in medical practice: An exploratory study’, HEC Forum: An Interdisciplinary Journal on Hospitals’ Ethical and Legal Issues, 29.1 (2017), 1–19 [accessed 7 June 2022] 26 University of Oxford, 97% of UK doctors have given placebos to patients at least once (2013) [accessed 6 June 2022] 27 T. van der Maaden, H. C. W. de Vet, W. P. Achterberg et al., ‘Improving comfort in people with dementia and pneumonia: A cluster randomized trial’, BMC Medicine 14, 116 (2016). https://doi​.org​/10​.1186​/s12916​- 016​- 0663-x

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28 Greg A. Sachs, Joseph W. Shega, and Deon Cox-Hayley, ‘Barriers to excellent end-of-life care for patients with dementia’, Journal of General Internal Medicine, 19.10 (2004), 1057–1063 [accessed 7 June 2022] 29 In UK law, while an Advance Statement should be taken into consideration when planning care and treatment, it is not legally binding - unlike an Advance Directive, which is. 30 R. Gillon, ‘Welcome to medical humanities – And why’, Journal of Medical Ethics, 26 (2000), 155–156 31 Medical Schools Council, What makes a good doctor? (July 2019) [accessed 18 July 2022] 32 Department of Health and Social Care, New obesity strategy unveiled as country urged to lose weight to beat coronavirus (COVID-19) and protect the NHS (2020) [accessed 18 July 2022] 33 ‘My Mad Fat Diary’, dir. by Tim Kirkby Benjamin Caron Anthony Philipson, Luke Snellin, Vanessa Caswill, Alex Winckler (Channel 4, 2014), series 2, ep. 7 34 ‘My Mad Fat Diary’, series 2, ep. 7 35 Britt Marit Haga, Bodil Furnes, Elin Dysvik, and Venke Ueland, ‘Putting life on hold: Lived experiences of people with obesity’, Scandinavian Journal of Caring Sciences, 34 (2020), 514–523 [accessed 18 July 2022] 36 Haga, Furnes, Dysvik, and Ueland, ‘Putting life on hold’ 37 NHS, Risks of high blood pressure (2019) [accessed 23 July 2022] 38 NHS, Get active (2022) [accessed 25 July 2022] 39 Entertainment Daily, Giovanna Fletcher’s ‘body shaming’ by NHS worker: ‘Mummy’s still got her tummy’ (2022) [accessed 25 July 2022] 40 Entertainment Daily, Giovanna Fletcher’s ‘body shaming’ by NHS worker 41 Pump Court Chambers, NHS staff must declare gifts from drugs companies or face jail (2015) [accessed 30 May 2022] 42 J. S. Swindell, Amy L. McGuire, Scott D. Halpern, ‘Beneficent persuasion: Techniques and ethical guidelines to improve patients’ decisions’, Annals of Family Medicine, 8.3 (2010), 260–264 [accessed 30 May 2022] 43 C. Mavroudis, and J. T. Cook, ‘Informed consent’, in Mavroudis, C., Cook, J., Mavroudis, C. (eds.), Bioethical controversies in pediatric cardiology and cardiac surgery. (Cham: Springer, 2020). https://doi​.org ​/10​.1007​/978​-3​- 030 ​-35660 ​- 6_3 44 Swindell, McGuire, and Halpern, ‘Beneficent persuasion’ 45 Cancer Research UK, About cervical screening (2022) [accessed 2 June 2022] 46 The Grove Book of Operas (Online Version 2008), Edited by Stanley Sadie and Laura Macy, Second edition, Entry: Falstaff, Oxford University Press. (Oxford Reference Online; accessed May 29 2013) 47 R. W. Yeh, ‘Parachute use to prevent death and major trauma when jumping from aircraft: Randomized controlled trial’,  BMJ, 363 (2018) [accessed 12 December 2022] 48 Yeh, ‘Parachute use to prevent death and major trauma when jumping from aircraft’

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49 Filippo Menczer, and Thomas Hills, Information overload helps fake news spread, and social media knows it (2020) [accessed 12 December 2022] 50 Jean-Francois Marmion, The psychology of stupidity: Explained by some of the world’s smartest people (London: Pan Macmillan, 2020), p. 63 51 Menczer, and Hills, Information overload helps fake news spread, and social media knows it 52 Erika Andersen,  True fact: The lack of pirates is causing global warming  (2012) [accessed 12 December 2022] 53 Lucy Crossley,  Noel Edmonds reveals he ‘tackled’ his own prostate cancer with £2,300 yoga mat but a doctor and a furious Phillip Schofield disagree during heated this morning interview  (2016) [accessed 12 December 2022] 54 Paul McDevitt, Feedback: Noel Edmonds zapped over electropad cancer claims (2016) [accessed 12 December 2022] 55 Crossley, Noel Edmonds reveals he ‘tackled’ 56 NHS,  Treatment – Prostate cancer  (2022) [accessed 12 December 2022] 57 WHO, Ten threats to global health in 2019 (2022) [accessed 12 December 2022] 58 I. Ullah, K. S. Khan, M. J. Tahir, A. Ahmed, and H. Harapan, ‘Myths and conspiracy theories on vaccines and COVID-19: Potential effect on global vaccine refusals’, Vacunas (English Edition), 22.2 (2021), 93–97 [accessed 27 March 2022] 59 WHO, Ten threats to global health in 2019 60 NHS, Why vaccination is safe and important (2022) [accessed 12 December 2022] 61 Wakefield et al., ‘Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children’, Lancet, 351.9103 (1998), 637–641 [accessed 26 March 2022] 62 Wakefield et al., ‘Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children’ 63 Angus Nicoll, David Elliman, and Euan Ross, ‘MMR vaccination and autism 1998’, BMJ, 316.7133 (1998), 715–716 [accessed 26 March 2022] 64 Nicoll, Elliman, and Ross, ‘MMR vaccination and autism 1998’ 65 Melanie Phillips, MMR - The warnings ignored (2001) [accessed 27 March 2022] 66 ‘Vaccine hesitancy: A generation at risk’, Lancet: Child & Adolescent Health, 3.5 (2019), 281 [accessed 26 March 2022] 67 Jemima McEvoy, Microchips, magnets and shedding: Here are 5 (debunked) Covid vaccine conspiracy theories spreading online  (2021) [accessed 26 March 2022] 68 Eric Allen Jensen, Axel Pfleger, Lisa Herbig, Brady Wagoner, Lars Lorenz, and Meike Watzlawik, ‘What drives belief in vaccination conspiracy theories in Germany?’ Frontiers

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in Communication (2021) [accessed 27 March 2022] 69 Darel Cookson, Daniel Jolley, Robert C. Dempsey, and Rachel Povey, ‘“If they believe, then so shall I”: Perceived beliefs of the in-group predict conspiracy theory belief’, Group Processes & Intergroup Relations, 24.5 (2021), 759–782 [accessed 27 March 2022] 70 Maria Elisa Di Cicco, Vincenzo Ragazzo, and Tiago Jacinto, ‘Mortality in relation to smoking: The British Doctors Study’, Breathe, 12.3 (2016), 275–276 [accessed 27 March 2022] 71 ASH: Action on Smoking and Health, Smoking statistics (2021) [accessed 27 March 2022] 72 ASH: Action on Smoking and Health, Smoking statistics 73 Rachel Orritt, Health inequalities: Why do people smoke if they know it’s bad for them? (2022) [accessed 17 May 2022] 74 Mermaids Press, Exclusive: Mermaids’ research into newspaper coverage on trans issues (2019) [accessed 3 July 2022] 75 Amanda Sharples, Elizabeth Page-Gould, How to avoid picking up prejudice from the media (2016) [accessed 3 July 2022] 76 Leah Bitsky, 12 celebrities who bravely spoke about their eating disorder battles (2020) [accessed 3 July 2022] 77 Emily Wilson, The lovely bones (2006) [accessed 3 July 2022] 78 Wilson, The lovely bones 79 Daniel J. DeNoon, Deadliest psychiatric disorder: Anorexia (2011) [accessed 3 July 2022] 80 Ellie Tkocz, It’s time to change our eating disorder language (2016) [accessed 3 July 2022] 81 Laura Beil, More men are developing eating disorders: Why are we treating it as only a women’s disease? (2016) [accessed 3 July 2022] 82 Andrew ‘Freddie’ Flintoff, Being Freddie: My story so far (London: Hodder and Stoughton Ltd, 2005), p. 80 83 Jane Lavender, Dietician’s brutal comment that stopped Freddie Flintoff getting help for secret bulimia (2020) [accessed 3 July 2022] 84 The Children’s Society, Young carer facts (2022) [accessed 29 July 2022] 85 The Open University, Different cultures, different childhoods (2022) [accessed 29 July 2022] 86 The Children’s Commissioner, The big ask voices: Shining a light on young carers (2022) [accessed 29 July 2022]

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87 Martin P. J. Edwardes, The origins of self: An anthropological perspective (London: UCL Press, 2019), p. 76 in jstor, [accessed 25 July 2022] 88 Mihaly Csikszentmihalyi, ‘Contexts of optimal growth in childhood’, America’s Childhood, 122.1 (1993), 31–56 (p. 31) [accessed 25 July 2022] 89 Denis Campbell, Record numbers of women reach 30 child-free in England and Wales (2022) [accessed 25 July 2022] 90 Bronagh Loughlin, Why am I expected to have children just because I’m a woman? (2017) [accessed 25 July 2022] 91 Boyd Tonkin, Tales from a midwife, by Jennifer Worth (2010) [accessed 25 July 2022] 92 BBC One, Rhod Gilbert: Stand up to infertility (2021) [accessed 26 July 2022] 93 Rhod Gilbert, HIMfertility: Time to talk tackle (2022) [accessed 26 July 2022] 94 Claire Hooker, and Hans Pols, ‘Health, medicine, and the media’, Health and History, 8.2 (2006), 1–13 (p. 1) [accessed 25 July 2022] 95 D. Wilkinson, and J. Savulescu, Ethics, conflict and medical treatment for children: From disagreement to dissensus [Internet]. (London: Elsevier, 2018), Chapter 1, The Charlie Gard case 96 Wellcome Centre for Mitochondrial Research, Mitochondrial DNA depletion syndrome (MDDS) (2022) [accessed 26 July 2022] 97 Magdalena Kegel, Nucleoside therapy explained: Why doctors hesitate to treat Charlie Gard (2017) [accessed 28 July 2022] 98 Ben Jacobs, and Helen Pidd, Donald Trump offers help for critically ill baby Charlie Gard (2017) [accessed 25 August 2022] 99 Jacobs, and Pidd, Donald Trump offers help for critically ill baby Charlie Gard 100 BBC News, Parents of Charlie Gard raise £1.2m for pioneering treatment (2017) [accessed 28 July 2022] 101 Hrushikesh Vyas, NHS hot topics: The Charlie Gard case (2019) [accessed 29 July 2022] 102 Vyas, NHS hot topics 103 Jonathan Mitchell, Charlie Gard: Dad yells ‘evil’ as hospital bosses reveal new scans on terminally ill baby make for ‘sad reading’ (2017) [accessed 26 August 2022] 104 David Connett, Great Ormond Street staff ‘get death threats’ over Charlie Gard (2017) [accessed 26 August 2022] 105 Professor Ranjana Das, Alfie’s army, misinformation and propaganda: The need for critical media literacy in a mediated world (2018) [accessed 26 July 2022] 106 Wilkinson, and Savulescu, Ethics, conflict and medical treatment for children

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107 C. Eiser, ‘Children’s quality of life measures’, Archives of Disease in Childhood, 77 (1997), 350–354 108 BBC News, Charlie Gard parents announce death of ‘beautiful boy’ (2017) [accessed 28 July 2022] 109 Natalie Evans, Doctor branded parents’ desperate bid to find treatment for sick baby a “spanner in the works” (2017) [accessed 28 July 2022] 110 Merriam​-Webster​.​com Dictionary, put/throw a spanner in the works (2022) [accessed 28 July 2022] 111 Sam Greenhill, ‘I can’t bear to lose him. He’s my boy’: Baby Charlie’s tearful father begs for chance to send incurably ill son to US for treatment as High Court hears parents were called ‘a spanner in the works’ by doctors (2017) [accessed 28 July 2022] 112 Sky News, Charlie Gard’s parents: ‘Baby Oliver has made our fight for Charlie’s Law even more important’ (2020) [accessed 28 July 2022] 113 Sarah Johnson, and Nick Hopkins, Charlie Gard medic decries ‘soap opera’ that stoked abuse of hospital (2017) [accessed 25 August 2022] 114 Johnson and Hopkins, Charlie Gard medic decries ‘soap opera’ that stoked abuse of hospital 115 MedlinePlus, GABA-transaminase deficiency (2018) [accessed 26 July 2022] 116 Steve Graves, Alfie Evans timeline: How one young boy captured the hearts of millions (2018) [accessed 26 July 2022] 117 Redazione Ansa, Italy gives Alfie Evans Italian citizenship (2018) [accessed 29 August 2022] 118 BBC News, Hundreds in Alfie Evans Alder Hey Hospital protest (2018) [accessed 29 August 2022] 119 Patrick Sawyer, Alfie Evans’s father threatened private murder prosecution against doctors treating the toddler (2018) [accessed 26 July 2022] 120 BBC News, Alfie Evans: Claims protest makes hospital visits ‘scary’ (2018) [accessed 29 August 2022] 121 Iain Brassington, Alfie Evans: Please, just stop (2018) [accessed 29 August 2022] 122 BMA, NHS violence statistics (2021) [accessed 30 August 2022] 123 BMA, NHS violence statistics

Chapter 5

Case Scenarios 1

This chapter contains five case scenarios of patients with varying specialist care needs. As you read the referrals, think about your initial opinions and impressions – and note the changes you would make to these after you have read the background information. The aim of this chapter is to highlight that a full range of rounded, positive treatment options/clinical outcomes are only possible when we consider the patient holistically, as opposed to on a purely medical, facts-based basis. It is the narrative of each individual which should lead the way through their treatment, recovery, and maintenance of long-term health. If we view only the ‘facts in the case’ of each individual, our view of their overall health and wellbeing is obscured. These case studies should help you consider information such as an individual’s education, social factors, individual wants/needs, and also ethical considerations relating to their care. While all of the scenarios listed are clinically possible, all individuals, names, and events described are entirely fictitious, and any resemblances to actual events or persons, living or dead, are entirely coincidental. It is important to note that the scenarios described are all hypothetical, and not all situations will play out in the manner described. A suspicious patient may always be suspicious, for instance. However, in making the effort to better understand our patient’s wants, needs, and backgrounds, we are better able to steer our interactions toward positive outcomes. For the purposes of continuity/accurate description of available service provision, all case scenarios described are set within Scotland. DOI: 10.1201/9781003292067-5

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Case Scenario 1a: Azzura (Aggie) Romano Specialist Services Referral Form Referral to: Community Mental Health Team GP Information: Name: Dr George Kirk Practice Address: Graham Street Medical Practice Govanhill Glasgow G42 8YY Telephone Number/Extension: 56215 Email Address: G​.Kirk1​@GSMP​.sco​t​.uk

Patient Information: Ms ꙱ Mrs √ Miss ꙱ Mr ꙱ Other ꙱ If Other, please state: ______________________ Forename(s): Azzura Surname: Romano Date of Birth: 10/05/1940 Address: 5 High Street Govanhill Glasgow G42 6XY Patient Number: 19407521 Telephone Number: - 446333

Referral Status: ROUTINE Reason for Referral: I write to refer this 82-year-old lady to your community nursing team. Mrs Romano was born in Lombardy, Italy, and moved to Glasgow in the early 1960s. She is 161 cm (5 ft 3  in) tall, and weighs 63  kg (140  lb), giving her a BMI within the healthy range (24.6). This has, however, reduced from a weight of 155 lb some six weeks prior. Mrs Romano is right-handed. Mrs Romano can present as somewhat paranoid and suspicious of medical staff, and this has been the case for some time now. Her preferred name is Aggie. Mrs Romano has been experiencing recurrent falls, both at home and in the community. She recently fell in the road and required an ambulance, and this has caused significant alarm to her neighbours. Following her fall in the road, Mrs Romano was noted to have a small abrasion above her left eyebrow. A CT scan was organised to exclude the possibility of fracture or brain bleed, and this came back clear. Following her discharge, I carried out an assessment of Mrs Romano’s medications in order to review her anticholinergic burden, as it was felt that polypharmacy may be contributing to her falls as well as her confusion. Medication changes are in progress. Mrs Romano was advised to take Paracetamol for pain relief and has been utilising this to good effect. Staff in A&E noted Mrs Romano to be increasingly frail, and displaying evidence of self-neglect, cognitive impairment, and impaired functioning. There are concerns about how well she is managing at home. Mrs Romano has been very dismissive of both practice and hospital staff when these concerns have been raised, and she appears to have limited insight into the extent of

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her unmet care needs. She will allow one close friend (a neighbour, Brenda – telephone -462861) into her home, but otherwise appears suspicious of support offered. Mrs Romano was seen in clinic today for a post-discharge check, but she is unwilling to discuss potential support or treatment options. Facts in Azzura Romano’s Case 82-year-old female, speaking English as a second language. Healthy weight range. Right-handed. Evidence of self-neglect. Reason for Referral to Community Mental Health Team Recurrent falls, and evidence of cognitive decline. No evidence of intracranial injury. Medically fit for discharge from A&E.

HOLISTIC VIEW Mrs Romano’s GP has referred to her consistently as Mrs Romano; however, it is noted that her preferred name is Aggie. Using this preferred name consistently will establish a level of trust and respect between her and her care team, and so this is a pivotal and immediate consideration. Following discharge from hospital, Aggie’s GP has undertaken a review of her medications and has identified a drug which is known to increase confusion; there are subsequently now plans in place to reduce and discontinue this medication over the following weeks. This referral is discussed at the community mental health team’s weekly allocations meeting, and following this Aggie is sent an appointment for review in clinic by a consultant psychiatrist. Unfortunately, she fails to attend. Given the suggestion of lack of insight and reluctance to engage with services, the sense is that long-term care may well be necessary in the near future; however, a community mental health nurse is asked to visit Aggie and assess her at home in the first instance. Given Aggie’s suspicion of healthcare workers, she is telephoned beforehand to advise her of the visit and introduce her to her named nurse – Tracy. Tracy explains that the purpose of this visit will be to assess whether or not there is anything further that could be done to support Aggie with her memory, and her falls. Aggie is uncertain about allowing nursing staff to visit and will not commit; however, she does give consent for Tracy to speak with her friend/neighbour,

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Brenda, beforehand, with a view to her being present at her appointments with her. Thereafter, a visit takes place with Brenda in attendance for support, and in order to further establish trust and rapport between Aggie and her named nurse. Tracy arrives at Aggie’s home and finds her to be somewhat guarded about the visit but accepting with support from her friend. The inside of Aggie’s home is quite chaotic, and it is evident that she is struggling with her activities of daily living. In conversation, Aggie reveals that her husband, Alfredo, died several years ago, and she now lives alone, and has no family. Aside from her neighbour, Brenda, she otherwise has no support network. Aggie becomes tearful during the consultation, stating that she is worried about her memory, and the possibility of having to enter a long-term care facility in the future. Aggie came to the UK with her husband, who was also Italian, and they ran a café together. He had a bad car accident several years before his death, and Aggie spent many years as his carer. This was both physically and emotionally demanding for Aggie and rendered her with few social contacts and interactions outside of his various hospital appointments. As such, Aggie now feels very isolated, and frightened about her future. Tracy allows Aggie to talk through her concerns and advises her that there are several supports which could be put in place to assist her in retaining her independence. Aggie is reluctant to accept in-home support but agrees to further visits from Tracy on a monthly basis. She also agrees to undertaking a memory assessment at her next appointment. As rapport is established, the frequency of Tracy’s visits is increased, and a good relationship is built. Memory assessments are taken at regular intervals, and it is established that Aggie is experiencing mild cognitive impairment. It is explained to Aggie that this is not a type of dementia, and that it is not guaranteed to lead to a diagnosis of dementia in the future. Aggie seems reassured by this information and appears much less guarded. She accepts assistance in organising a weekly cleaner. During the same consultation, Aggie makes a brief reference to pain in her feet. On further questioning, it appears that Aggie has grossly elongated toenails, which are also thickened, possibly due to a fungal infection (onychomycosis). The condition of her toenails is poor enough that it is now interfering with her movement, and Tracy immediately identifies this as a potential contributing factor to Aggie’s falls. Aggie is extremely embarrassed about this situation, however, and is reluctant to accept assistance as she believes it will demonstrate her inability to live alone. Tracy reassures Aggie that her aim is to assist her in retaining her independence for as long as possible, and that being seen by a podiatrist would be a good step toward achieving this. Following further conversation, Aggie accepts a supported home visit (with Tracy in attendance) from a podiatrist specialising in patients with dementia/ cognitive impairment. After this visit, Aggie’s ability to walk is markedly improved, and with her increased mobility her self-neglect also improves.

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As Aggie’s interactions have been positive and beneficial to this point, she accepts the suggestion from Tracy much easier that she be referred to occupational therapy for assessment, in order to identify her ongoing strengths and potential care needs. As Aggie is fiercely independent, and also of the view that she can manage living independently, this review is pivotal in helping to retain her senses of dignity, pride, and autonomy about her care and future. Again, this review is accepted with support from Tracy, and her neighbour Brenda. Aggie also accepts referral from Tracy to a befriender service, and to a day centre for social interaction. To this end, Tracy also introduces a support worker to Aggie, who visits weekly (initially alongside Tracy’s visits) to complete a weight chart, and support Aggie with community integration, accompanying her to the day centre for the first couple of visits, and facilitating introduction to others. This assists Aggie in feeling comfortable in a new situation, while at the same time promoting independence. Furthermore, Meals-on-Wheels is organised, which not only assists in increasing Aggie’s balanced nutritional intake, and therefore weight, but also reduces the extent of Brenda’s carer stress, and her dependency upon her. The benefit of Aggie’s polypharmacy review is notable as, following the GP-led alterations to her medication regime, her anticholinergic burden is reduced with benefit. Aggie shows some reduction in levels of confusion, and this is evidenced in the repeating cognitive assessments undertaken by Tracy.

OUTCOME

Aggie has been made to feel listened to, autonomous, and respected, and has been actively involved in her care decisions and requirements. By establishing a level of trust, it has been possible to elicit information from Aggie which she was otherwise guarded about, and with additional support services in place her recurrent falls and functional status have improved, and she is now able to remain independent in her own home. She will be followed up, initially on a three-monthly basis, for repeated cognitive assessments.

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Case Scenario 1b: Oscar James Thompson Specialist Services Referral Form Referral to: Dietitian GP Information: Name: Dr Thomas Spock Practice Address: Frigate Medical Practice Buckhaven Fife KY9 8YZ Telephone Number/Extension: 56076 Email Address: T​.Spock1​@FMP​.sco​t​.uk

Patient Information: Ms ꙱ Mrs ꙱ Miss ꙱ Mr ꙱ Other √ If Other, please state: Master___________________ Forename(s): Oscar James Surname: Thompson Date of Birth: 19/12/2016 Address: 5 Low Street Methil Fife KY9 6ZX Patient Number: 20167522 Telephone Number: - 466994

Referral Status: URGENT Reason for Referral: Oscar is a 5-year-old boy, who lives with his mother (Charlotte) in Methil, Fife. He is 109.2 cm (3 ft 7 in) tall and weighs 16 kg (35.2 lb). This is below the first centile for weight and height, and he is therefore identified as failing to thrive. Oscar is the middle child of three siblings, also having a brother (Francis) and sister (Beau) aged 3 years, and 7 years, respectively. Oscar is left-handed. I would be grateful if you could review Oscar in your clinic with a view to supporting mum in managing the changes required to control his recently diagnosed coeliac disease. Oscar is still experiencing intermittent diarrhoea, poor appetite, stomach ache, and is struggling to gain weight. Charlotte appears ambivalent toward medical advice, stating that ‘any food is better than no food’ and, as such, I am concerned that Oscar’s diet is not currently optimised. As Oscar has been identified as a ‘faltering growth’ (‘failure to thrive’) child, and as per Growth Faltering Protocols, a health visitor has been organised on a weekly basis to monitor and record his ongoing weight and growth. In the interim, I have prescribed a short course (three days) of Loperamide to resolve his diarrhoea, as well as rehydration drinks. As his lower abdominal symptoms have been persistent, a stool sample has been analysed to screen for parasites, and Oscar’s faecal calprotectin levels have also been checked, in order to identify whether there is an underlying inflammatory bowel condition. Oscar’s faecal calprotectin levels have been

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found to be raised, giving him initially differential diagnoses of coeliac disease, Crohn’s disease, or ulcerative colitis. As such, a blood screen has been performed, including ferritin, folate, vitamins D and B12, and a Tissue Transglutaminase IgA (tTg-IgA) test has been carried out. These results, along with a subsequent biopsy of the small bowel, are suggestive of a confirmed diagnosis of coeliac disease. I would be grateful for your input with this child, in order to stabilise his condition, and assess his nutritional intake and future weight gain.

Facts in Oscar James Thompson’s Case 5-year-old male identified as ‘failure to thrive.’ Weight and height fall below the first centile. Recent diagnosis of coeliac disease.

Reason for Referral to Dietitian Ongoing management of coeliac disease. Ongoing weight loss.

HOLISTIC VIEW While Oscar, as the patient, is the key focus, Charlotte’s feelings are the most important aspect of the dietetics consultation. Her expressions of ambivalence could indicate that she feels overwhelmed, and the therapeutic purpose is therefore to work with her to explore and achieve what is possible going forward. Coeliac disease as a diagnosis, even for an adult who is motivated, is difficult to manage. Oscar needs to eliminate gluten entirely from his diet, and there can be hidden challenges along the road to achieving this. For instance, ideally Oscar should not even use the same toaster as the rest of his family, as this could result in cross-contamination of his food. The dietitian explains that, while the main aim for Charlotte is to eliminate 100% of gluten from Oscar’s diet, it will be a step-by-step process, and she should start with achievable changes, such as removing the ‘big offenders’ – bread, pasta, and some breakfast cereals. This will be a good first step in reducing his overall intake of gluten. To this end, Oscar’s dietitian begins by exploring what changes are achievable for Charlotte, with a view to working with small changes in the first instance. Charlotte expresses concern that she is unable to consistently supervise Oscar’s eating, particularly at times when he is not under her care; for instance, when he is at school. This is an insightful response from Charlotte, as she is thinking of the big picture. This suggests that she is feeling overwhelmed and may be wondering if her efforts alone are enough. The dietitian reassures Charlotte that if everyone involved in Oscar’s care makes their own contributions, his treatment will come together and he will start to feel well, and this will have a significant impact on his overall health,

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wellbeing, and behaviour. Oscar’s father works as a commercial fisherman, and is away at sea for lengthy periods, often of several months at a time. When he is on shore leave, Charlotte states he is a very ‘hands off’ father, and from the tone of the conversation it is established that the couple are on brittle terms. Oscar’s dietitian suggests that they offer a follow-up appointment with Oscar’s father present, during his next period of shore leave, to ensure that he is fully informed of Oscar’s diagnosis, and its implications. The dietitian also sends a copy of the clinic letter from this appointment to Charlotte, to ensure that she has all the information they have discussed close to hand if necessary. It is suggested that Charlotte implements a short-term food diary (for a period of one week) for Oscar, not only to keep track of his dietary intake, but also to encourage mindfulness from other people who care for Oscar on a regular or intermittent basis. The dietitian also advises that they are able to engage and work with Oscar’s school, to ensure that appropriate food is provided for him there. As Oscar is fussy with his food, Charlotte does not feel she has the time to dedicate to overseeing his eating. Charlotte is clearly struggling with the demands of caring for three children under the age of 10. She states that ‘any food is better than no food’ and appears very anxious about his ongoing struggle with gaining sufficient weight. It appears that Charlotte struggles to encourage Oscar to eat substantial meals, and is anxious about the additional financial burden that a diagnosis of coeliac disease presents. Oscar’s dietitian makes Charlotte aware of the Gluten-free Food Service. This service means that, in Scotland, there is a very robust prescription system available for gluten-free products, which goes some way to negating the financial burden. These products will be available to order and collect from Oscar’s registered pharmacy. With regard to Oscar’s fussy eating, the dietitian explains that some of this will likely be due to the pain he experiences after he eats, and that through avoidance of trigger foods (foods containing gluten) this will improve his pain, and subsequently reduce the anxiety he currently feels around eating. The dietitian takes the time to explain Oscar’s diagnosis to him, in child-friendly terms, and using pictures. Oscar is reassured that although he has to be careful about what he eats, he can still enjoy the same foods as his friends but from his own special supplies, as glutenfree alternatives are available. This not only helps Oscar begin to understand his diagnosis, but also feel included in his future options. To further this understanding, the dietitian works with Oscar and Charlotte to create a list of gluten-free substitutes for Oscar to try before his next appointment. Oscar states that his favourite meal is macaroni and cheese, and so a gluten-free version of this is highlighted as something he would be keen to try. Charlotte is encouraged to let Oscar feed himself at mealtimes, and avoid coercive feeding. This will help ensure that Oscar feels in control of his diet, and also reduce the risk of him forming any negative associations with food, and the act of eating.

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The importance of reading food labelling is stressed to Charlotte, and the dietitian mentions Natasha’s Law, which was implemented to make it easier for those with dietary restrictions to identify safe/suitable foods.

OUTCOME

Oscar has been included in his consultation, enabling him to feel autonomous and involved, while Charlotte, as his main care giver, has been provided with additional information and support regarding his condition, and his ongoing requirements. This is an ongoing process, but the dietitian has prioritised the establishment of a level of trust, and placed themselves in a supportive role in relation to Oscar’s ongoing nutrition and targeted weight gain. In taking a detailed history from Charlotte, Oscar’s dietitian is able to successfully liaise with other parties involved (such as Oscar’s father, school, and health visitor) and help build toward a consistent nutritional intake for him. This should ensure continuity of care for Oscar, and help reduce his lower gastrointestinal symptoms, pain, and directly impact his reluctance to eat a wide range of foods, as he feels more comfortable trying new things without associating these with increased pain and discomfort. Oscar is seen on a ‘six-appointment principle,’ initially meeting with the dietitian on a weekly basis, and then fortnightly to help support the family in the changes being made to his diet. Following this, he is reviewed on a six-monthly basis, for up to a further six appointments, with the aim being that they self-discharge when Charlotte feels the situation is no longer overwhelming.

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Case Scenario 1c: Arnold Gaylor Specialist Services Referral Form Referral to: Diabetic Foot Clinic GP Information: Name: Dr Alfred McCoy Practice Address: Reekie Medical Centre Edinburgh EH12 3RF Telephone Number/Extension: 88923 Email Address: A​.McCoy​@EMC​.sco​t​.uk

Patient Information: Ms ꙱ Mrs ꙱ Miss ꙱ Mr √ Other ꙱ If Other, please state: ______________________ Forename(s): Arnold Surname: Gaylor Date of Birth: 14/02/1974 Address: 17 Gardner’s Walk Edinburgh EH12 3BQ Patient Number: 19747523 Telephone Number: - 462861

Referral Status: ROUTINE Reason for Referral: I would be grateful if you could please undertake review of the above gentleman in your clinic. He has recently moved to Edinburgh from Inverness, where he was under regular podiatry review; however, he appears to have been making limited progress. Arnold is a 48-year-old man, who was born and raised in Leachkin, Inverness. He is 176 cm (5 ft 9 in) tall, and weighs 139 kg (306 lb), giving him a BMI within the overweight/ obese range (44.59). Arnold is right-handed. Arnold has a well-established diagnosis of type II diabetes, which is, worryingly, poorly controlled. I have copied and pasted information from Arnold’s last podiatry review for your information: Mr Gaylor has a history of peripheral arterial disease: pedal pulses are monophasic and non-palpable. Sensation is significantly reduced, and Arnold complains of a burning sensation, particularly at night, as a result of peripheral neuropathy. Mr Gaylor attends the diabetic foot clinic on a weekly basis due to active diabetic foot disease. An ulceration measuring 3 × 2 mm and probing 3 mm in depth presents at his first metatarsophalangeal joint. Despite weekly debridement, wound dressing, offloading, and footwear changes, Mr Gasylor’s ulceration has deteriorated and is now probing to the joint capsule. Mr Gaylor informs me that he is shortly to relocate to the Edinburgh area. I am of the opinion that his new team may wish to consider treatment options including the possibilities of medication, surgery, or hyperbaric oxygen therapy – or a combination of all of these therapies – depending on his ongoing response.

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Facts in Arnold Gaylor’s Case 48-year-old male. Overweight/obese weight range. Right-handed. Well-established diagnosis of type II diabetes.

Reason for Review by the Diabetic Foot Clinic Active diabetic foot disease. Persistent/resistive ulceration.

HOLISTIC VIEW Arnold presents at clinic frustrated with his lack of progress and is increasingly sceptical of the medical interventions being offered to him. He is being seen today by a clinician he has not seen before. Arnold’s new podiatrist is a woman of about 20 years his junior, and he makes disparaging and sexist remarks in this regard, calling her ‘Honey,’ and stating that he would like to see the doctor, not the receptionist. This is clearly unacceptable behaviour which will not be tolerated within the consulting room; however, rather than engage with Arnold’s comments, or become confrontational, his podiatrist states that her name is Ms Fernie, although he is welcome to call her Hanna. It is important that Hanna does not assume Arnold’s comments stem from ignorance or misogyny, as he may be struggling to express anxieties around his ongoing health and lack of progress thus far. Hanna states that she is a qualified professional who will do her utmost to respect and assist Arnold, but that relationship must work both ways. To that end, she asks if there is anything she could do to reassure Arnold before they begin their consultation, or if he has any questions about his care and treatment to date. In doing this, Hanna has set a clear boundary as to the language and behaviour she finds acceptable within the consulting room, while enabling Arnold to ask further questions should he wish to do so. As this is their first consultation, in managing the situation in this way, Arnold has been allowed the opportunity to reflect upon his own behaviour, and alter his presentation appropriately, without feeling judged or chastised. This should assist in ongoing consultations and lay the foundations of a healthy rapport. Arnold again states his frustration with his lack of progress so far but chooses not to ask any further questions at that time. He chooses to refer to Hanna as Ms Fernie. As Hanna examines his ulceration, she makes conversation about Arnold’s life and

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lifestyle, including things such as hobbies and physical activities. Arnold states that he is struggling to walk his dog at the moment due to his current health issues, and he is finding this frustrating. Hanna also has a dog – a Springer Spaniel – and as the conversation continued Arnold becomes more animated, and his manner becomes markedly more relaxed. His dog is a Border Collie, named Cooper. During this conversation, Hanna discovers that Arnold has been removing his dressings and offloading devices immediately upon returning home, allowing Cooper, to ‘clean’ his wound. It appears that Arnold believes that this is beneficial to his health, as he has heard that canine saliva contains antibacterial properties. He also struggles to reach his feet, and so finds this practice a convenient way of managing his wound care. Hanna acknowledges this information, and paraphrases to ensure her own understanding: ‘So, you regularly allow Cooper to lick the ulceration, as this is the most effective method of cleaning you feel you can currently achieve?’ Arnold confirms this information, and Hanna asks him to expand on why he believes that this is a good idea. Arnold states that there is ‘something in dog saliva that makes it antiseptic’ and, given no medical treatment to this point has been effective, he is reluctant to end the practice. Arnold becomes somewhat defensive, as he states that his nephew has chastised him for this, but he ‘knows what I have researched’ and ‘I want my feet to heal properly.’ Hanna listens to Arnold and remains neutral. She agrees with Arnold that there are indeed thought to be some healing properties in dog saliva, and that in certain situations (for instance, survival situations) having a dog lick a wound can be beneficial; however, in Arnold’s case, this practice may be doing more harm than good. Hanna explains that his ulceration needs to be kept as dry as possible in order for it to have the best chance of healing. While Arnold remains reluctant to stop the practice, as Hanna has validated his stance before seeking to challenge his belief, he does not feel belittled or chastised. He is therefore more open to positive suggestion, and he agrees to a course of antibiotic therapy, with the understanding that he will not allow Cooper to lick his wounds at least until the course is complete. Once Arnold had stopped the practice of having Cooper clean his wounds, the ulceration was allowed to dry out, which gave it sufficient time to begin to heal. Gross debridement was then effective, and Hanna was able to offload the ulceration effectively when he kept all his devices in place. At Arnold’s final appointment with Hanna, he was openly appreciative of the treatment he had received and was displaying marked improvement in his mobility and overall demeanour. As he was leaving the consulting room, he turned back to state: ‘See, I told you the dog licking works.’

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OUTCOME

Arnold has been made to feel listened to and respected, while clear boundaries have also been drawn within the consulting room. A level of trust and rapport was established which made it possible to elicit information from him which otherwise may not have become apparent. By validating Arnold’s beliefs, as opposed to immediately and directly challenging them, his podiatrist was able to reframe these beliefs, at least for a trial period. This allowed Arnold’s ulceration to heal, and his mobility and functional status to improve. Unfortunately, Arnold’s belief remains that the dog was the main cause of his recovery, and his team will need to be mindful of further instances over the course of his future care. This is documented clearly in his case notes.

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Case Scenario 1d: Nihal Anand Specialist Services Referral Form Referral to: Young-onset Dementia Psychiatry Clinic GP Information: Name: Dr Jolene Sulu Practice Address: Stirling Health Centre Stirling FK7 0AX Telephone Number/Extension: 56070 Email Address: J​.Sulu​@SHC​.sco​t​.uk

Patient Information: Ms ꙱ Mrs ꙱ Miss ꙱ Mr √ Other ꙱ If Other, please state: ______________________ Forename(s): Nihal Surname: Anand Date of Birth: 28/06/1960 Address: Isla May Care Home 75 Main Street Stirling FK7 5BT Patient Number: 19607527 Telephone Number: - 310425

Referral Status: URGENT Reason for Referral: I would be grateful for your timely review of the above gentleman. Mr Anand is a 62-year-old man, who was diagnosed with young-onset dementia some three years ago. He has several other long-term health conditions, including arthritis, and atrial fibrillation. He is 180  cm (5  ft 11  in) tall, and weighs 66  kg (145.5  lb), giving him a BMI in the healthy range (20.3). Mr Anand is right-handed. Mr Anand now has difficulty recognising his name; however, he responds well to family members and his preferred name is Dada ji. Mr Anand was born in Birmingham. He relocated to Scotland roughly four or five years ago, and until recently he stayed at home with his wife and eldest daughter; however, as his diagnosis has progressed his behaviour has deteriorated, and it has been necessary for him to become resident at Isla May Care Home. Care staff have contacted the practice with concerns about unmanageable behaviour. From lunchtime onward, Mr Anand becomes increasingly agitated and will pace the corridor. This has led to several falls: one in which he sustained significant bruising of the ribs as he fell against a cabinet. Staff report that as his agitation increases, Mr Anand will begin to ‘cause havoc’ around the care home: shutting all doors, and turning off all power switches. Where staff have not intervened in time, this has left essential appliances, such as fridges, without power, and more recently the family of another resident have complained as a pressure mattress was switched off while in use. Mr Anand’s family have complained in turn, regarding their perceived lack of supervision

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for Mr Anand, and the relationship between staff and next of kin is as a result becoming somewhat fractured. Care staff are requesting antipsychotic and/or sedative prescription, to curtail these episodes of agitation and unwanted behaviours, and without this it is feared that Mr Anand will lose his placement at the home. In the interim, I have prescribed a short course of Lorazepam, to be utilised on a PRN basis.

Facts in Nihal Anand’s Case 62-year-old male. Diagnosis of young-onset dementia. Healthy weight range. Right-handed.

Reason for Review by the Young-onset Dementia Psychiatric Clinic Evidence of ‘sundowning’/agitation. Pacing, and falls, which have resulted in injury. Unmanageable behaviour in the care home. Care staff are requesting antipsychotic/sedative prescription.

HOLISTIC VIEW Mr Anand is scheduled a home visit appointment with the consultant psychiatrist (Dr Takis). This appointment is held in the mid-morning clinic, in order to enable Mr Anand to participate to the best of his ability, outside of his known periods of agitation. The care home is informed, and the clinic letter requests that a member of care staff, as well as a member of Mr Anand’s family, is present at the review to assist in the collection of collateral information. Upon arrival, the consultant is greeted by the care home manager, Mr Anand’s key worker, and also several members of his family: Mrs Anand, their eldest daughter (Sophia), two sons (Adam and Manpur), as well as a daughter-in-law (Disha). It is clear that Mr Anand has a very supportive and involved family, and Sophia in particular appears anxious, and somewhat ‘on edge’ about the consultation. Sophia immediately makes it clear that the family’s wish is not for medication. The family appears brittle, and unhappy about Mr Anand’s placement in a care home. Dr Takis begins by introducing himself to both Mr Anand and his family and holds a brief conversation with him. Mr Anand states that he is very happy in the care home, although he cannot say where it is, or for how long he has been a resident there. Dr Takis asks Mr Anand if he is in any pain or discomfort. Mr Anand responds, ‘yes,’ but cannot identify where this pain is located.

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Mr Anand’s placement at Isla May was initially on a respite basis; however, it was felt that his power of attorney, Mrs Anand (who has her own health difficulties), was struggling to cope, and his residency is now a permanent placement. Mr Anand’s children are unhappy about this and express the belief that he should be ‘at home with family.’ Both Dr Takis and the care home manager take time to speak with the family about this and attempt to reframe the situation. In having full-time care support in place, Mr Anand’s family is now able to spend more time focusing on creating happier memories – with time previously dedicated to physical care/support now being effectively ‘freed.’ This should enable them to spend more quality time together as a family, despite Mr Anand no longer being resident within the family home. During this conversation, Mr Anand becomes slightly agitated, states that he is currently at work, and that he will only have time to stop and talk while he drinks his tea. Dr Takis asks Mr Anand where he currently works, and he gestures around and says, ‘for the shop.’ Mr Anand’s family provides further detail in this regard, and it transpires that Mr Anand worked for many years as a logistics and distribution manager, organising the storage and distribution of goods to several large supermarket chains. In more recent years, as his health deteriorated, he undertook voluntary work at a local charity shop. Mr Anand is labouring under the belief that he is volunteering within the care home and is difficult to distract or redirect in this regard. Care staff raise the topic of medication. Dr Takis notes that Mr Anand has already had several falls and, as sedative medications are a risk factor here, he would be unwilling to prescribe them as a long-term option. Where every expression is a communication, and as Mr Anand is expressing non-specific pain, Dr Takis prescribes Paracetamol, to be taken four times daily. Staff are asked to initiate an appropriate pain assessment tool for use in dementia, as well as a behaviour chart, to see if this prescription makes any impact upon his levels of agitation. With regard to his falls, it is noted that there is often a radio playing in the corridor for ‘background noise.’ It is noted that Mr Anand enjoys music, and this is often what draws him to that area. Dr Takis asks Mr Anand’s family to provide music from his collection which he enjoys, but with the proviso that this is of a slower tempo. This will be put on a portable device which Mr Anand can enjoy through headphones as he moves freely around the home. Furthermore, where Mr Anand believes he is working within the care home, Dr Takis explains that providing him with an occupation in this regard could greatly assist his agitation and sense of purpose. Sophia becomes animated when discussing options to keep her father occupied, and it is agreed that she will bring in a box of bric-a-brac for her father to sort through in the afternoons/evenings. This will provide him with both distraction and a sense of purpose, which should help channel his attention and avoid the interference with

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electrical sockets, etc. A meeting with Isla May’s Activities Coordinator is arranged for Sophia to discuss further potential options, and the family is asked to bring in a list of activities Mr Anand previously enjoyed ahead of this. Dr Takis agrees to review Mr Anand, initially on a fortnightly basis, to ensure his levels of agitation and unwanted behaviours are controlled.

OUTCOME

Paracetamol prescription was found to improve Mr Anand’s general presentation, although he remained agitated for several days. The slower tempo of music in the corridor, however, did go some way to slowing the speed of his pacing, which was seen to actively mitigate his risk of falls. Once supplied with an occupation (the box of bric-a-brac) Mr Anand’s presentation improved markedly. Care home staff reported him to be more relaxed, cheerful, and presented with a renewed sense of purpose. To this end, he had also been undertaking several other small tasks within the home (for instance, assisting with cleaning ornaments), and with this new method of distraction/redirection his evening agitation was now reduced to a manageable level. Mr Anand’s family was better able to enjoy visits with him, as he presented as far less distressed and agitated, and care home staff no longer requested a pharmacological resolution. In understanding Mr Anand’s background, his consultant was able to utilise his narrative to achieve an outcome which increased his quality of life, the experience of his family and carers, and also avoid antipsychotic prescription.

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Case Scenario 1e: Abby Sable-Adamson Specialist Services Referral Form Referral to: Neurosurgery Clinic GP Information: Name: Dr Clark Riker Practice Address: Aberdeen Street Medical Practice North Road Aberdeen AB9 0RH Telephone Number/Extension: 56353 Email Address: C​.Riker​@ASMP​.sco​t​.uk

Patient Information: Ms √ Mrs ꙱ Miss ꙱ Mr ꙱ Other ꙱ If Other, please state: ______________________ Forename(s): Abby Surname: Sable-Adamson Date of Birth: 19/12/1997 Address: 8b Flax Cottages Farm End Aberdeen AB10 0HL Patient Number: 19977244 Telephone Number: - 882553

Referral Status: ROUTINE Reason for Referral: I write to refer Abby to your surgical assessment clinic. Abby is a 25-year-old woman who has been experiencing lower back pain since her late teens. She is 167 cm (5 ft 6 in) tall, and weighs 114 kg (251 lb), giving her a BMI in the obese range (40.3). Abby is lefthanded. Abby works in a call centre. Abby experiences chronic lower back pain on what she describes to be a constant basis. She utilises Paracetamol and Ibuprofen on a regular basis in this regard. Abby has had episodes of severe pain, to the extent where her movement is restricted, and she finds these instances very distressing. The last such episode was roughly six months ago, where she found the prescription of a short course of Diazepam, as well as Naproxen, and Tramadol, very beneficial. Tramadol was prescribed in Abby’s instance due to its reputation for being a safer choice of opioid with respect to unwanted respiratory effects in overweight patients. Abby had a private lumbar MRI performed, the results of which she has on a disc. Vertebral disc protrusion was noted at the L5/S1 level, as well as significant narrowing of the spinal canal. At time of referral, Abby has no symptoms of cauda equina. Abby has been advised to lose weight; however, she becomes defensive when this topic is raised, and is quite determined to undergo surgical assessment. I have attempted to discuss Abby’s overweight status with her, and she is aware of the 12-week free weight management group therapy which is available to her; however, to date she has declined this. I would be grateful if you could review her with a view to assessing her suitability for surgical intervention.

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Facts in Abby Sable-Adamson’s Case 25-year-old female. Diagnosis of disc protrusion and narrowing of the spinal canal. Overweight weight range. Left-handed.

Reason for Review by the Neurosurgery Clinic Assessment for suitability of surgical intervention.

HOLISTIC VIEW Abby attends the neurosurgical clinic and appears to be in significant pain. Her consultant begins by asking Abby to explain her history of back pain to her ‘from the beginning,’ as well as what she feels her expectations are from this appointment. Abby responds by detailing her history of lower back pain, and notes that there was no ‘big event,’ or injury which caused the initial onset. Abby states that her pain is constant and is affecting her mental health as she is constantly having to ‘grin and bear it.’ It is also affecting her social interactions, as she feels unable to undertake tasks and events which, previously, she would have enjoyed; for instance, attending festivals, or going to the cinema (as she is unable to tolerate a seated position for an extended period). Abby tends to recline, with lower back support, when at home, and states that one of her main aims is ‘to be able to sit in a normal chair again.’ Abby’s consultant then undertakes a physical examination, noting several aspects including Abby’s gait and posture, her range of motion, reflexes, and straight leg raise. Tenderness is noted over the sciatic notch, and Abby has a limited straight leg raise on the left side. Abby has provided the clinic with a copy of her scan on disc, and her consultant has viewed this before her consultation. It is now pulled up on the computer, and the screen is turned to allow Abby to see her images. Her consultant talks her through each view and explains the various elements of damage in Abby’s case (disc protrusion and narrowing of the spinal canal). Abby’s consultant explains that, as she has no ‘red flag’ symptoms of cauda equina syndrome (such as increasing numbness in the legs, or genitals), she is not currently a candidate for surgical intervention. Abby appears visibly upset by this, and becomes tearful, stating that she ‘just wants someone to help’ her, and that ‘nobody is taking me seriously.’ Abby’s consultant explains that undergoing spinal surgery is dangerous, and in her case the risks currently outweigh the benefits. This does not mean that surgery

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would not be an option for future consideration, should Abby’s symptoms worsen. It is also explained that surgery does not always impact chronic pain and, indeed, many patients continue to experience pain post-surgical intervention. It is therefore better for Abby to focus on changeable elements relating to her back pain. Abby interrupts at this stage and appears irritated. She states that ‘you don’t need to tell me I’m fat again, I already know.’ Abby then appears to close off, and folds her arms – a defensive, protective posture. It is clear that Abby feels threatened by the prospect of discussing her weight. Abby’s consultant states that many people who are heavier than Abby do not experience back pain, and that while losing weight may assist her symptoms ‘health is relative’ – Abby does not smoke, drink alcohol excessively, or take illicit substances – and there is a range of other things Abby can do which may improve her symptomatic status. For instance, while exercise is important for overall health, it is important that the exercise Abby undertakes is mindful of her existing health condition, and also serves a purpose toward her recovery. For instance, Abby should work on strengthening her core muscles, and taking up low impact exercises such as swimming, and Pilates, may help in this regard. Running or jogging should be avoided, as the impact of this could place further stress upon her spine. Abby laughs at this, stating that ‘I only run if something is chasing me!’ and appears to relax into the conversation. Abby’s consultant explains that there is no ‘quick fix’ to Abby’s symptoms, and unfortunately many people live with chronic back pain. To this end she should also be mindful of her posture, and not undertake heavy lifting, etc.; however, a referral to specialist physiotherapy would also be helpful here. This service may be able to recommend devices such as shoe inserts, or adaptive equipment (such as standing desks, and anti-fatigue mats) which may help Abby at work.

OUTCOME

Abby is an overweight woman who has clearly had many weight-related conversations in regard to her health and wellness; however, these have not always been positive. From the GP referral, and also statements made by Abby herself, it is clear that the focus of previous consultations has often been on weight and weight loss, rather than Abby’s active complaint, or her health overall. By taking the focus away from weight, Abby’s neurosurgeon has effectively reframed Abby’s view of her healthcare options and highlighted her personal responsibility in terms of good decision making (appropriate exercise, posture, etc.). While surgery is not recommended at this stage, Abby feels motivated to take control for her ongoing health, and agrees to specialist physiotherapy referral, as well as joining a local swimming group. Both of these actions will assist Abby not only in her ongoing pain management, but also encourage physical activity, which will be beneficial for her health overall.

Chapter 6

The Art of Communication in Practice

As we have already discussed, your role as a practitioner can be thought of as being synonymous with that of an educator. You are not merely imparting facts to the patients under your care – you also have a responsibility to ensure that they have understood the information they have been given and are able to go on to make fully informed, educated decisions based on that information. A key idea here is therefore the following: any information may be successfully explained to anyone – if you begin from the correct starting point. It can be seen that your own personal narratives, those of your patients, and also wider societal narratives all play key roles in your awareness and understanding of which starting points are appropriate for which patients. According to contextual learning theory, learning occurs only when individuals process new information or knowledge in such a way that it makes sense to their pre-existing frame of reference. When communicating with your patients, it is therefore helpful for you to have a wide frame of reference from which to draw – which, as we have also already discussed, engagement with the arts and humanities can help provide. Essentially – different information needs to be presented to different people in different ways to achieve the same end-goal (understanding). Dr Emily Kerr is an NHS doctor working in emergency medicine in Scotland. She has had a fairly typical junior doctor experience, working in a wide range of specialities including general medicine, general surgery, psychiatry, and haematology and, throughout all of these placements, communication has been key in managing her patients. Emily now teaches regularly on the importance of communication in medicine: One of the buzzwords you will hear throughout your medical career is the phrase ‘personalised medicine.’ You could fill an entire clinic with patients, each suffering from the same disease, and yet need to be adaptable enough to approach every single one differently. In recent years we have seen an DOI: 10.1201/9781003292067-6

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explosion of medical technology and medical research which has allowed us to tailor our treatments to give maximum benefit while reducing the unwanted or harmful side effects – and yet our communication remains almost completely unchanged. Personalised medicine requires us to consider the patient’s disease and how they tolerate treatment and side-effect profiles, but to understand this we first need to understand a patient’s fitness, their support network, what their goals of treatment are and what they feel is a quality of life. To do this, we need to listen to our patients, speak to them at a level that is appropriate and not rush through important conversations. We are often meeting patients on a day they have planned ahead for. They may have spent weeks and months contemplating seeing a doctor or awaiting a specialist's review. When I see patients in my clinic, they often tell me that they have taken the day off work to come and see me. Often, they have collected data for the appointment – photos of rashes, collateral histories from a family member, or have spent hours researching their symptoms in the hope to make the best of their appointment time. Alternatively, while working in the Emergency Department I am meeting patients who are often very unwell and terrified. Others have presented with conditions which are more appropriately seen by other services in a less urgent manner. Regardless, however, across this broad spectrum, when asked why they have come, or what has changed to prompt an urgent review – almost every patient will tell me some variation of ‘because I am scared.’ There are caveats to this, but the message I would like to give you is that we are meeting patients for a very small snapshot of their lives – they have sought out your opinion and your help. We need to personalise our approach to communication and listening. Communication can be done well, and it can be done poorly. You will know when you have done a bad job and so, unfortunately, will the patient. While that may have been a ten-minute consultation representing a small percentage of your day, it may reframe a patient’s view on the healthcare profession and the way they seek medical advice for years to come. Take your time, be kind and ask the patient, ‘How can I help you today?’

TASK: THINK ABOUT HOW YOU WOULD COMMUNICATE THE FOLLOWING INFORMATION TO THE PATIENTS LISTED BELOW

Scenario: A patient attends A&E reporting tightness of the chest, numbness of the face, and is hyperventilating in what is now a prolonged panic attack response. The patient is undergoing several significant life stressors (family sickness, work pressures, and a recent house move) at the moment, and has been experiencing chest pain for several days – as such, they are now convinced they are having a heart attack. They have a family history which includes several premature deaths, but no history (or family history) of heart concerns. Bloods have been taken and are reported as being within normal limits, as well as a heart trace which has shown no abnormality outside of tachycardia (related to the panic attack). The differential diagnosis is therefore one of panic disorder/response, or musculoskeletal chest pain, and the patient should arrange to see their GP for further follow-up.

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Patient A Flora Nolan is a 21-year-old unemployed woman. She lives a sedentary lifestyle, enjoying watching YouTube videos, and bingewatching television series. She is friendly, but very anxious, and reports to the A&E department regularly.

Patient B David Jones is a 73-year-old former university lecturer. He is energetic and lives an active lifestyle. He is abrupt with staff, but not unpleasant.

Flora is English. She did not finish school. She is suspected to have ASD, and this is currently under investigation by her GP.

Physically, David is a healthy weight. He is very tall with grey hair and brown eyes and looks his chronological age. He does not smoke but does consume alcohol.

Physically, Flora is obese, with a BMI of 30. She is a smoker but does not consume alcohol. She grew up in a working-class neighbourhood. She is an only child who was raised by her mother, who passed away recently. She is currently single, lives alone, and has attended the department unaccompanied.

He is Welsh. He has a postgraduate degree in engineering.

He grew up in an upper-class neighbourhood. His partner, a former surgeon, is currently abroad, and is not due to return to the country for several weeks.

Patient C Rhiannon Chattal is a 32-year-old musician. They are American, currently visiting friends in the UK.

Patient D Tony Baranecki is a 47-year-old labourer. He is bright and pleasant but can also be very rude when he does not feel his Physically, Rhiannon needs are being met. is of average-height He has a history of and weight. They are verbal aggression a non-smoker and do toward medical staff. not drink alcohol. Tony is Polish, having They grew up in moved to the UK as a middle-class a child. English is neighbourhood and therefore his second have a degree in language. He started music and sound studying as an production. electrician at college but never finished the Rhiannon is from course. a multiracial family and identifies as Physically, Tony is homosexual. Their of average-height, partner, Stephanie, and is moderately is in attendance with underweight. He them. Stephanie is looks older than polite but demanding his chronological of staff attention age. He is a heavy and dominates smoker, and drinks conversation. alcohol.

Rhiannon personally is extremely pleasant David has two sons: and amenable; Sawyer, aged 35 and however, they seem Hallam, aged 45. reluctant to ask for clarification, and David has attended will instead make the department placatory gestures with Hallam’s wife, where they have Louise, who is very not understood supportive. information (head nodding, etc.).

Tony grew up in a middle-class neighbourhood. He is the middle of five siblings. He is currently in a relationship and has two young children. The whole family has attended A&E together, and the children are restless.

When looking at these differing examples, we can immediately see that a talk-by-numbers format is inappropriate, as all the patients listed above have differing communicative needs. For instance, what is appropriate for Patient A, who presents

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with a potential learning difficulty, will be inappropriate for Patient B, who has a highly educated personal background. It is important that all of these interactions are as positive as possible, to ensure good patient experience, understanding, and also to ensure that risk factors are mitigated – for instance, the verbal aggression noted in the history of Patient D. The concepts of mirrored empathy, and imaginative empathy (as discussed in Chapter 1) are important here; what emotions are these patients experiencing, and how would you feel in their position? This will help you consider how to prioritise the information you are imparting, and also understand the emotions being expressed and where they are coming from. For example, Patient D may be verbally aggressive due to frustration at a language barrier, fear, or stress and distraction caused by the agitated nature of his children. Your use of body language is also pivotal, and it should be remembered that – while an awareness of previous aggression is vital in terms of your own safety – a patient’s history should not disproportionately affect the manner in which you interact with them, and you should always aim to remain neutral, and avoid labelling an individual due to their background. Of course, as we have earlier established, communication with someone who is determined to misunderstand you may never be successful – both in relation to aggression, and also multiple other factors. Having a firm grasp on when to be more authoritative in your statements will be helpful, here – for instance, in defining boundaries with the partner of Patient C, or in the face of repeated questions from Patient A as a frequent presenter to the emergency department. Several of the above patients may benefit from a written summary of their attendance and ongoing care plan – for example, Patient A, who attended alone, Patient C, who is reluctant to ask for clarification, and also Patient D, who may require more time to process information. There may also be other factors which could improve individual patient experiences – for example, Patient A could also benefit from having a specialist nurse in attendance (where available) to help process information, and Patient D may benefit from an interpreter, where available. A telephone call could also be offered to Patient A, to speak with a friend or relative of their choosing, to mitigate the possibility that information imparted in the clinical setting is distorted outwith. A key consideration for all the patients listed above is Theory of Mind. Just because you have understood the information you have imparted – have they? For instance, while Patient A may benefit from the use of more basic narrative (e.g., ‘when your brain decides something is very scary, it sends signals to your heart to tell it to get faster, and this can be a really scary feeling,’ etc.), Patient B may benefit from a far more practical approach (e.g., ‘panic attacks occur because in high-stress situations,

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your body can sometimes produce too much adrenaline,’ etc.). Patient B’s level of education, however, does not necessarily mean that they will understand all the terminology you use. Your skills of active listening are therefore vital – there are, to this end, no silly questions, and you should utilise skills of active listening in all instances: open-ended questions, acknowledgement, and paraphrasing, seeking clarification, definition of patient expectations, and summary and explanation. The doctor looked at my results and told me I had a lot of oedema, and all I could think was ‘what on earth is oedema?’ but I felt a bit stupid so felt too embarrassed to ask. I had to look it up when I got home – it means swelling. And so, I spent the rest of the afternoon saying to myself ‘you taught English for 30 years, you moron – how can you not know what oedema means?’ – Anon To further illustrate the importance of beginning at the correct starting point, we can look at instances where things have been taken out of their proper context – for example, in the story of Olympic swimmer Eric Moussambani. In 2000, competing in the 100  m freestyle swim at the Summer Olympics in Sydney, Moussambani set a new personal best, not only winning his Olympic heat but also setting an Equatoguinean national record. In what was one of the most memorable moments of the history of the Sydney Olympics, Moussambani won the hearts of millions – gaining the affectionate nickname ‘Eric the Eel’ – and became internationally famous overnight. He set a further national record for distance in 2001, when he took part in the World Aquatics Championship in Fukuoka, Japan, and despite not competing personally in future Olympic events, in 2012 he was made official coach of the national swimming team of Equatorial Guinea. With no additional context, and in light of these outstanding achievements, you might be surprised to learn he was banned from training in his home country for being seen to have shamed the nation with his performance.1 Context is key. Born in Equatorial Guinea – a Central African nation – in 1978, Eric Moussambani was granted a place in the Olympics to promote swimming in the country. He had only recently learned to swim, had never seen an Olympic sized swimming pool before arriving in Australia for the competition, and had been forced to practice in his hotel pool between the hours of 5–6 am (so as not to disturb the other guests). ‘I didn’t know what the Olympics were all about,’ he said – speaking on the 20th anniversary of the games – ‘I didn’t even know where Australia was.’2 As he lined up in an extra heat in the first qualifying heats of the Sydney Olympics, his two competitors were disqualified for false starts – leaving him as the only

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swimmer in the race – and he recorded the slowest time ever seen in Olympic history, completing the swim in 1 minute 52.72 seconds. To illustrate even further, let’s take the following example – without knowing the names of the specific compounds – which of the following foods would you choose from this list? Choice A A shot of liquid which contains the potential to cause cellular oedema and increased intracranial pressure, leading to confusion, lethargy, headache, and drowsiness, as well as possible bradycardia and hypertension, and death.

Choice B A mouthful of puree containing amygdalin (a cyanide-and-sugar based molecule) has the potential to cause symptoms such as stomach cramps, headache, nausea, and vomiting. Fatal doses are recorded at low levels, having the potential to cause cardiac arrest, respiratory failure, coma, and death.

Choice C A biscuit flavoured with a compound containing Myristicin, having the ability to induce a prolonged period of delirium, disorientation, restlessness, muscle weakness, tremor, anxiety, tachycardia, nausea, vasomotor instability, hypothermia, absolute absence of saliva, constricted pupils, some emotional lability, a tremendous psychological feeling of isolation, and death.

Choice D A simple syrup suspension containing a multivitamin suspension, including vitamins A, B, C, D, K, and iron.

Based on the information provided, it is highly likely that you have selected option D. But the chances are you ingest the other substances on a regular – if not daily – basis. How does your selection change once you fully understand the context of the substances offered? Choice A Water (leading to water intoxication if ingested in large amounts).3 Choice B Apple seeds (requiring the ingestion of numbers in the hundreds to prove lethal).4 Choice C Nutmeg (commonly utilised in cooking/baking, and toxic at moderate quantities).5 Choice D A sugar/water solution containing extremely high levels of vitamin B3, sufficient to cause headache, dizziness, flushing of the skin, liver damage, and severe retinal swelling/sight loss.6

This exercise is, of course, designed to be deliberately misleading – but it is an excellent example of how the application of context can be seen to have a significant impact on how we understand new information – and demonstrates that without understanding proper context we are unable to process new information in a manner which enables the production of informed consent. In relation to your practice, it is therefore important that the information you impart guides your patients to a proper

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understanding of their health and healthcare options, rather than only the options you believe to be most appropriate for them. This is not an exact science. Communication is an art form which takes time to master, and it is true that some practitioners may think of medical ethics as a very theoretical field, it also has some very practical implications and applications, and engagement with the arts and humanities can be seen as vital to your ongoing, evolving communication style, and practice. Medical student Nasir Malim wrote in 2015, that: Through a diverse curriculum [historically, socially, and politically explored] I have learned that not everyone is granted their due humanity in the society constructed around us. Through my profession, however, perhaps I may alleviate the situation or at the least have a better understanding of it in my work.7 In terms of ongoing professional development, the humanities can often provide insights not considered by even the most experienced of practitioners; having the ability to affect patient care and experience in unexpected, incredibly beneficial ways. a. GILLIAN LYNNE – ‘WRIGGLE BOTTOM’ A good example of this can be found in the life and experiences of dancer Gillian Lynne. In 1933, following concerns raised by her schoolteachers, a 7-year-old Lynne was taken by her mother to the doctor. It was noted that Lynn had a poor attention span and had an apparent nervous energy. She simply couldn’t stop moving – to the point where her teachers had even nicknamed her ‘Wriggle Bottom.’8 Telling the little girl he needed to speak to her mother privately, the doctor turned on the radio, and she was left alone. Through a small window, Lynn was watched as she interacted with the music: The minute they'd gone, I leaped up. I leaped on his desk, I leaped off his desk. I danced all around the room. I had the most fabulous time … [and they watched me for a time] … and he said … ‘there is nothing wrong with your child. She’s a born dancer.’ 9 Following advances in psychiatric care and understanding of special learning needs, later in her life she was diagnosed with ADHD; however, Lynne never forgot the moment she walked into her first dance school, finding it full of people like her, people who couldn't sit still, people who had to move to think.

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Lynne, the little girl who couldn’t sit still, went on to become a ballerina with the Royal Ballet, a dancer, choreographer, actress, and director, and was responsible for some of the most successful theatre productions in history. At the age of 87, she received a Damehood in the 2014 New Year Honours List. Four years later, the New London Theatre was officially renamed the Gillian Lynne Theatre, making Lynne the first non-royal woman in history to have a West End theatre named after her. She died in July 2018 – a multimillionaire. Had she seen a different practitioner that day, she might have been started on medication and told to calm down. And, for somebody else – that might have been appropriate. The point to remember is that there is no ‘one treatment fits all.’ History taking should not be viewed as a ‘tick box’ activity – just as you must aim to be understood, you must also aim to understand. Sometimes that means being creative in your interpretation of someone’s personality and circumstances. In Lynne’s own words – ‘[the doctor] saw an energy – and I happened to be possessed of one of the most unusual energies – and he saw it. Now, how seldom is that?’10 NOTES 1 Andrea Babbington, Equatorial Guinea backlash leaves Eric the Eel floundering (2000) [accessed 17 September 2022] 2 Couldn’t swim, didn’t know Olympics: Eric ‘Eel’ Moussambani looks back on iconic Sydney 2000 moment (2020) [accessed 17 September 2022] 3 Basil V. Peechakara, and Mohit Gupta, Water toxicity (2022) [accessed 17 September 2022] 4 The Guardian, Cyanide in fruit seeds: How dangerous is an apple? (2015) [accessed 17 September 2022] 5 Abstracts of the 2011 International Congress of the European Association of Poisons Centres and Clinical Toxicologists, 24–27 May 2011, Dubrovnik, Croatia, Clinical Toxicology, 49.3, 197–269 6 Mount Sinai, Vitamin B3 (Niacin) (2022) [accessed 25 September 2022] 7 Nasir Malim, This is why the humanities are important in medicine (2015) [accessed 17 September 2022] 8 Institute of Equality and Diversity Professionals, Wriggle bottom ADHD (2020) [accessed 17 September 2022] 9 TED Radio Hour, Dancer needed to move to think (2014) [accessed 17 September 2022] 10 TED Radio Hour, Dancer needed to move to think

Chapter 7

Case Scenarios 2

This section contains a collection of scenarios in which you will be provided with a limited patient background, followed by a practitioner statement, and associated written correspondence, which are aimed to provide you with examples of both poor and good communicative practice. The aim of working through these scenarios is to further develop your skills of interpersonal awareness, empathy, and self-reflection – and, as a direct result, your overall skills of communication. These case studies should help you consider the importance of the manner of your communication – for example word choice and tone – as well as once again establishing that a full range of rounded, positive treatment options/clinical outcomes are only possible when we consider the patient holistically, as opposed to on a purely medical, facts-based basis. While all of the scenarios listed are clinically possible, all individuals, names, and events described are entirely fictitious, and any resemblances to actual events or persons, living or dead, are entirely coincidental. It is once again important to note that the scenarios described are all hypothetical. It is also important to note that these are one-sided statements and do not represent the natural flow of conversation in clinic (responses are not given to questions posed, for instance). This section does, therefore, require the use of some imagination on your part, and it is important to once again be mindful of that fact that not all situations will play out in the manner described.

DOI: 10.1201/9781003292067-7

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ACTIVITY 1. As you read through the following scenarios, you should take the time to consider each patient and their needs, and then reflect on the communication you have been presented with: what are each statement’s strengths, weaknesses, and how could they be improved? 2. Each statement is then followed up with a discussion, and a statement revision. You should consider to what extent you feel the revised statement has been improved, and whether there are any further changes which could be made. 3. In respect of the associated written statements, you should carefully consider their strengths and weaknesses: what discrepancies are there between the background information/the information which has been written, and how might this affect the patient’s care/experience?

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Case Scenario 2a: Dermatology Background: A 34-year-old woman attends the dermatology clinic for the treatment of acne. First treated for the condition at the age of 11, she has been on multiple topical treatments and oral antibiotics for the past 23 years, with varying levels of effectiveness. She was prescribed an antibiotic several years ago which was effective, but she cannot remember the name. Until recently she considered her skin to be manageable; however, several months ago she stopped taking the contraceptive pill, and since this time her skin has become unmanageable. She does not wish to restart the contraceptive pill due to adverse side effects. She is requesting a topical treatment to keep the condition under control, and explicitly states that she does not wish to take anything requiring a blood test. On questioning, she states that this is in part due to needle phobia, but also states that ‘my skin is embarrassing, but it doesn’t affect my life enough that I want to risk side effects from strong medication.’ Her regular medications include pain relief for chronic pain, and ‘as required’ medication for anxiety. She lives alone and works full time as a lead pharmaceutical sales executive. She is seen in clinic by the dermatology nurse prescriber. Conversational Aim: To present available treatment options, those being: Isotretinoin prescription. Practitioner Statement: ‘Ok, so, I understand you’ve been suffering with acne for a long time now – I can see from looking at you today though that it isn’t as bad as it’s been made out to be on your referral, so that means it’s probably not as bad as you think it is. I can’t find a record of the medications you’ve tried before but regardless of that I think the best thing we can do today is put you on a drug called Isotretinoin. Now I know you’ve said you don’t want anything that requires a blood test but really anything else we give you is only going to suppress the problem, not cure it, and you’d only need two blood tests anyway. The concerns you have about side effects are valid but really this is why we monitor you on these medications. We both really want the problem solved and to get to that solution there’s really nothing else I can prescribe for you. You would need to go back onto a regular contraceptive too, because you absolutely cannot get pregnant while taking this medication. If you really just want a cream, I’ll give you a common one that’s basically Isotretinoin in topical form – I can see you’ve tried it before and didn’t like it but try applying it twice a week instead of every day and just see how you get on. If you really don’t want to try Isotretinoin, I’ll discharge you back to your GP and you can discuss things with them – there’s really nothing else that we can offer you here. I’m very disappointed I haven’t been able to put your mind at ease today but if you want to be referred back in future, we can certainly get you started on the medication that’ll help.’

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Weaknesses of Statement

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Potential Improvements

Discussion: In respect of establishing rapport, the practitioner has inadvertently set the conversation up as one of conflict – ‘I can see from looking at you today though that it isn’t as bad as it’s been made out to be on your referral, so that means it’s probably not as bad as you think it is.’ Regardless of the objective observations of the practitioner, the feelings of the patient regarding her skin complaint have not been established. It is reasonable, however, to assume that she currently finds her skin problematic and, indeed, she states the complaint to be ‘embarrassing,’ and these feelings should not be minimised. As discussed earlier, while the practitioner is certainly an important part of the conversation, it is essential to recognise that they are not the focus. While a practitioner may have similar conversations on a daily basis, it is important to remember that the patient, relative, or friend sitting in front of them does not. What is a routine conversation for the practitioner may be life changing to someone else, and minimisation of emotion can pose considerable barriers to ongoing conversation, with patients feeling defensive, and becoming less and less able to accurately observe the motives, values, and emotions of the person they are speaking with – as a result, potentially disengaging themselves entirely from the conversation. This minimisation by the practitioner can also be seen in the discussion – or lack thereof – of the patient’s concerns surrounding side effects. The practitioner states that these concerns are ‘valid,’ and yet has not in actuality established what these concerns are. Furthermore, the patient background has not been taken into account – specifically the notes of chronic pain and fluctuating mental health – both of which can be adversely affected by the medication being offered. The patient has also expressed a wish to not

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take regular contraceptive medication due to adverse side effects, which has also been overlooked. The discussion of side effects should always be of paramount concern not only from the point of view of candour and transparency, but also to ensure informed consent to treatment. In terms of available treatment options, while the practitioner has been very clear with the treatment plan available, it is not one which aligns with the expectation of the patient. While expectation and reality cannot always align, in this instance the practitioner makes a statement which goes directly against the expectation of the patient – ‘anything else we give you is only going to suppress the problem, not cure it.’ Indeed, the patient has attended the clinic seeking a topical option to keep her skin complaint controlled and has not mentioned any expectation of a ‘cure.’ The practitioner now appears to not be listening to the patient's needs/expectations, and the interaction has the potential to feel prescriptive, impersonal, and distant. Persuasive language within this statement is also problematic: ‘We both really want the problem solved … I’m very disappointed I haven’t been able to put your mind at ease today but if you want to be referred back in future, we can certainly get you started on the medication that’ll help.’ As children, we were doubtless all familiar with a parent or caregiver not being angry, ‘just disappointed’ – and this scenario can be seen to be mirrored, here – the practitioner wants to help, it is the patient who is framed as providing the obstacle, and thus the onus for the disappointing outcome of this consultation is now placed directly upon them. The patient has not been properly listened to, and treatment options have not been properly discussed – and yet it is the patient who leaves feeling that they have been problematic. This could potentially make them less likely to engage with healthcare provision in the future, as they feel overlooked, ignored, and their concerns are unfairly minimised. Revised Practitioner Statement: ‘Ok, so, I understand you’ve been suffering with acne for a long time now – could you tell me a little more about that? One thing that is quite positive is that although you do have noticeable acne, on the scale that we use to grade severity I’d probably describe this as a mild case. Which I know might feel surprising if you’re self-conscious about it, but that means it should be easier for us to treat. Unfortunately, I can’t seem to find a record of the medications you’ve tried before but you say you’ve tried lots of topical and oral treatments before – can you remember any of the names? I think, unfortunately, you’ve maybe tried all the topical treatments we’re able to prescribe here today, but I wonder if it’s worth considering a drug called Isotretinoin. You would need two blood tests for this but if it’s something you’d like to consider after this conversation we can look at ways to make that easier for you with the phobia. Could you tell me a little more about your concerns regarding side effects? You do have a history of pain and anxiety and Isotretinoin can exacerbate both of these things – so if you did decide you wanted to give it a try it’s something we’d have to monitor very closely. If you are sure you don’t want to try it – that’s absolutely fine – but I’ll need to speak to a colleague about any other potential options I might be overlooking. I am afraid though that there might not be anything else they can suggest,

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either – it might be a case of going back over the topical treatments you’ve tried before and seeing if you have any positive response to them at this point. That can be done under the supervision of your GP. I’ll write to your GP and let them know about what we’ve discussed today, and any other recommendations if they are available – would you like a copy too?’ Statement Improvements



Potential Further Improvements

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Written Correspondence General Hospital General Hospital Way Port General G3N H05 Dermatology Department dermatology​@generalhospital​.s​cot Letter ID: 744-NRY-264 Dear General Practitioner, Diagnosis: Persistent adult acne (moderate). Treatment: Isotretinoin gel or cream suggested – to be applied twice daily. Not for Isotretinoin at this time – see below. Follow Up: Discharged from the nurse-led dermatology clinic. Many thanks for referring this lady to the clinic whom I saw today. She is 34 years old and gives a history of acne affecting her since the age of 11 or 12. This problem partially cleared with the contraceptive pill when she was younger. Laterally, she has been treated with antibiotics for a number of years. Her skin has been particularly bad for the past two years, despite restarting the contraceptive pill. She is not sexually active with a male partner at the moment and does not wish to take this for much longer. She is otherwise well, takes no regular medication, and has no allergies. She lives alone. Examination revealed moderate acne with papules, pustules, and comedones over her lower cheeks and neck. In view of non-response to other treatments and the duration of this problem, she would be a candidate for oral Isotretinoin. She did not want to explore this in any depth today having read about this medication already. She has concerns about the list of side effects and I was unable to alleviate any of these with further counselling or the suggestion of low-dose Isotretinoin which often reduced the risk of side effects. She is also needle phobic and tells me she does not want to take any medication which will require blood tests. I was disappointed she left the consulting room without a treatment plan in place. With kindest regards, Dermatology Nurse Practitioner Written Correspondence Positives



Written Correspondence Discrepancies

Potential Consequences

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Case Scenario 2b: DNACPR Background: A 94-year-old man has been admitted to a hospital emergency department with suspected pneumonia, and generalised frailty. Until recently he has been relatively independent and has been living in a residential care home with minimal support for activities of daily living. His wife is also resident in the same care home, and they have neighbouring bedrooms in this facility. His family – three adult children (a teacher, a shop worker, and a farm labourer), and his wife of 60 years, herself aged 85 – are distressed by the hospital admission and would like him to be returned to the residential home as soon as possible. The patient’s condition is, however, markedly severe, and it is felt by attendant medical staff that he is entering the end stages of his life. He is rousable, but markedly confused, and presents as very tired, with laboured breathing. There is no DNACPR document currently in place. A meeting has therefore been called with the consultant physician responsible for the ward, to discuss not only the severity of the situation and the immediate treatment options available, but also future care options. A secretary is present to take minutes. Conversational Aim: To discuss and complete anticipatory care planning and DNACPR documentation alongside attending relatives/next of kin. Practitioner Statement: ‘We all know why we’re here – I’m sorry to meet you all in such circumstances. I’m the doctor on the ward today, and unfortunately dad is quite poorly at the moment. While we can make him as comfortable as possible, there’s not much else we can do – I think you probably need to prepare yourselves for the fact he might not be coming home. I’m very sorry, I know it’s a lot to take in. You can comfort yourselves with the knowledge that he’s lived a good, long life – a lot of the patients I see don’t make such a fantastic age, and if they do, they’re often locked away in care homes by this point. There is some paperwork we need to discuss, though, which I know is the last thing you’ll want to be thinking about now, but this is the world we live in – so much red tape. We all want what’s best for him – at the moment, he unfortunately doesn’t have a DNACPR form in place. So, because he can’t decide what’s best for him at the moment, it’s important that we do that for him. I’ve got the document here and we’ll fill it out together. In the event that his heart stops, do you want him to be resuscitated? What about oxygen? Antibiotic therapy? We are looking after dad to the best of our ability but at the end of the day you’re his family, you know him and his wishes far better than we do, so it’s only right you get to make these decisions with me here.’ Strengths of Statement



Weaknesses of Statement

Potential Improvements

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Discussion: The establishment of rapport in this statement is negligible. While the practitioner has made expressions of sympathy, these are generic and as a result have the potential to feel flippant and disingenuous. Furthermore, the preferred name of the patient has not been established, and the use of ‘dad’ can therefore appear overfamiliar and inappropriate. Furthermore, patient background has not been considered as the practitioner references people of his age being ‘locked away in care homes.’ This displays not only disinterest, or disregard, for the patient being treated, but is also disrespectful to the family members present; the patient’s wife may feel a sense of shame or embarrassment at being reliant upon residential care, and his children may experience shame or guilt at not being able to support their parents without outside assistance. In reference to the DNACPR document, the practitioner in this instance has not utilised Theory of Mind. It has been assumed that the relatives in attendance are aware of what this document is, or what anticipatory care planning involves, and the purpose of these documents has not been properly explained. This could render them unable to make informed decisions regarding the care of their relative, and also potentially disengages them from the conversation as they do not understand what is going on. It is also notable that the completion of this documentation has been presented as a binding family decision, and this is misleading. Such recorded documents are not, in themselves, legally binding and should be regarded as a clinical assessment and decision, made and recorded in advance, to guide immediate clinical decision-making in the event of a patient’s cardiorespiratory arrest.1 As such, while sensitive discussions with family members are important in helping to ensure an established, well-rounded clinical picture, they should not be presented as putting any onus of responsibility upon the family itself. Making clear the responsibilities of medical staff in end-of-life care planning ensures that family members do not feel stressed or pressured into making what they could perceive to be life altering, extremely difficult decisions, at what is already undoubtedly a period of great emotional significance for them. The manner in which advanced care planning documentation has been presented here could have the effect of setting a defensive tone to the conversation and make it more difficult to engage meaningfully and productively with the family members in attendance. Revised Practitioner Statement: ‘Good afternoon, everyone, I’m the doctor in charge of this ward today. I’m sorry to be meeting you all under such circumstances – I’m afraid your dad is quite poorly at the moment. What is it he’d usually prefer to be called? Ok – Davie it is. We are doing the best we can to make Davie as comfortable as possible right now, but unfortunately beyond that our options are a little limited. I am very sorry to say this, but I think you probably need to prepare yourselves for the fact he might not be coming home. Do you have any questions about what’s going on with him at the moment? Would you like a few minutes alone before we continue this conversation? I can see you’re obviously a very close-knit family. Given you’re all here together, I think there’s some decisions we need to talk about – just to make sure we’re all on the same page. At the moment, Davie unfortunately doesn’t have a DNACPR form in place. This stands for “do not attempt cardio-pulmonary resuscitation.” Without one of these forms, in the event that his heart stops, the hospital doesn’t have any instructions about what to

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do next, and the default is that they have to try to preserve life at all costs – but that’s not always the best option. So, because he can’t decide what’s best for him at the moment, it’s important that we do that for him. I’ve got the document here and we can go through it together – but if you want to take a copy away overnight to have a look at that’s fine. Although I’m going to ask you for your opinions here, please know that these aren’t set in stone. At the end of the day, it’s the hospital that makes these decisions – we just want to be able to take your thoughts and feelings into account. But please don’t think all the responsibility here is with you. In the event that his heart stops, do you know what your dad’s thoughts were about being resuscitated? What are your thoughts? Medicine has ways of keeping people alive now with machines and respirators and medication, but we need to consider what the purpose of that is and what quality of life will be there. Resuscitation is effective only in a very small percentage of people your dad’s age, and it can involve things like broken ribs as well. However, in terms of keeping him comfortable we can certainly provide things like oxygen if his breathing worsens.’ Statement Improvements



Potential Further Improvements

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Written Correspondence General Hospital General Hospital Way Port General G3N H05 High Dependency Unit hdu​@generalhospital​.s​cot Letter ID: 744-PQZ-376 Minutes: Ward Meeting A meeting was held on the High Dependency Unit to discuss ongoing care, and DNACPR documentation. All family members were in attendance, as well as a member of the senior nursing team, consultant physician on call, and a secretary (taking minutes). The consultant physician welcomed everyone to the meeting and expressed their regret at having met in such circumstances. It was explained to all present that the gentleman is currently very unwell, and there is evidence to suggest that they are entering ESRD (end stage renal disease). This means that his kidneys are gradually shutting down. It was explained that all efforts will be made to maintain comfort and dignity during the end stages of life. In this respect, DNACPR documentation was discussed with family present. It was explained that CPR is likely to be unsuccessful in this case due to general frailty, and that in the event that CPR was successful this would not be in the best interests of the patient due to failing overall health. This decision was made on the basis of overall benefit to the patient, in discussion with his wife, and all attendant children. It was explained that while CPR would not be offered in the event of the heart stopping, this does not mean that other treatment will discontinue, and the hospital will still provide comfort care. Anticipatory care planning documentation was discussed in this regard, and family opinion was taken into consideration. It was determined that comfort care will be provided – namely pain relief, positioning, and other non-invasive measures. Intubation and mechanical ventilation will not be utilised. A copy of these minutes will be filed in the case notes. Yours sincerely, Consultant on Call Written Correspondence Positives



Written Correspondence Discrepancies

Potential Consequences

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Case Scenario 2c: ‘Wild Goose Chase’ Background: A locum consultant is travelling to undertake a routine home visit appointment in a rural area. They have been overbooked for appointments, and still have several other home visit appointments to attend. It is likely that they will be working into the evening and will need to cancel/rearrange personal plans to accommodate this. It is now 3 pm, and they have not had time to have a lunch break. The weather conditions are poor, and they are already running significantly late – but they have been unable to inform either the patient or their secretary of their delay due to issues maintaining mobile telephone signal. Despite having the full address and postcode, they are struggling to locate the address of the patient. Eventually, the telephone signal is maintained for long enough to place a call to their secretary to advise that the appointment will need to be rescheduled. Conversational Aim: To inform the secretary of the delay, and the necessity to reschedule the home visit appointment. Practitioner Statement: ‘I can’t find this address … you’ve sent me on a wild goose chase. I’m late anyway and I can’t drive around all afternoon, the appointment will need to be rescheduled. Apologise? No, I’m not going to contact them, that’s not my job.’ Strengths of Statement

Weaknesses of Statement

Potential Improvements

Discussion: This is an excellent example of practitioner stress, and within this interaction they have incorrectly directed the focus of their frustration toward their secretarial support – who is responsible for neither the weather conditions, nor the technical issues they have experienced. This therefore presents as an excellent example of what is known as displaced aggression. While it is normal for any individual to feel the need to vent frustration in times of stress, with displaced aggression this frustration is directed incorrectly toward a person/ thing who is not the primary source of the annoyance. Indeed, displaced aggression

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typically occurs when it is impossible or unwise to respond aggressively toward the actual source of the provocation or frustration,2 and in professional interactions this can cause understandable friction between colleagues. In this scenario, the consultant has been plagued by a series of situational circumstances – high caseload; unfamiliarity with the area; poor weather conditions; technical issues – which have made the completion of the scheduled appointment impossible. It is also impossible, however, for the consultant to vent their frustration in any meaningful way toward the primary source of their provocation – the weather, typically, does not respond to criticism (just ask the British public – in 2010 a study found that – at almost any moment in the UK – at least a third of the population is either talking about the weather, has already done so or is about to do so. We love a whinge!).3 This interaction demonstrates the need for mindful communication – the requirement for being not only present in the moment and making one’s own intentions/requirements/ emotions known/understood, but also taking into consideration the perspectives of those who are being spoken to. For example, in this scenario, the consultant has failed to acknowledge the experience of the secretary who, until this moment, by all accounts unaware of the delays and difficulties being experienced. They have also failed to consider the experience of the patient, who has been waiting for their appointment to take place, and who is potentially anxious/irate/emotional about the delay, and who may be potentially distressed/agitated by the necessity to reschedule. Revised Practitioner Statement: ‘I’m really frustrated – I can’t find this address … the signal out here is awful. I’m late anyway and I can’t drive around all afternoon, the appointment will need to be rescheduled. I’m not in a position to contact them right now, so if you could do that on my behalf it’d be appreciated.’ Statement Improvements



Potential Further Improvements

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Written Correspondence General Hospital General Hospital Way Port General G3N H05 General Medicine Department generalmedicine​@generalhospital​.s​cot Letter ID: 744-OSZ-265 Dear Patient, I write to express my apologies for the necessity to reschedule the home visit appointment, initially planned for yesterday afternoon. I was plagued by a series of technical issues which were out of my control, and finding your address was made somewhat challenging. My secretary will contact you in due course with a new appointment date. Yours sincerely, Consultant in General Medicine Written Correspondence Positives



Written Correspondence Discrepancies

Potential Consequences

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Case Scenario 2d: Neurosurgery Background: A 42-year-old man attends the neurosurgery clinic having experienced several episodes of severe lower back pain, resulting in altered sensation in the lower limbs and feet, inability to sit for short or prolonged periods, and persistent pain in both the lower back, and both calves laterally. When his pain is acute, he cannot sit upright, walk, or stand. His history reports multiple episodes of this, each time a little worse than before, with a ‘prolapsed disc’ diagnosed a few years ago in primary care. Due to the persistent nature of the lower limb numbness, and the patient’s concerns of worsening and more frequent exacerbations, an MRI scan was performed. This revealed a large central disc prolapse, as well as facet joint hypertrophy at L3/4, L4/5, and L5/S1. He works in construction and has been on long-term sick leave due to the high level of manual handling which is required in his current role. His symptoms have, however, been gradually improving over the several weeks since the MRI scan took place. He has hearing difficulty, being profoundly deaf, and attends the clinic with a sign language interpreter. Conversational Aim: To discuss the results of the MRI scan and explore future treatment options. Practitioner Statement: ‘Ok, so. Back problems. This has been quite a persistent theme for him for a few years, yes? I’m afraid back problems are really common – it’s something like 84% or 85% of people will have lower back pain at some point in their adult life. That does mean that often it’s just something we have to learn to live with. I know that can be quite difficult and frustrating. Now, we could go in and perform surgery on him but given his symptoms have been improving that’s likely something which would have more risk than benefit. There’s a disc prolapse and a fair bit of hypertrophy on the scan, but these can resolve themselves so if we go in now there might not actually be much left to scale away. I think swimming, physio, and if there’s another bad flare up – go straight to A&E because that might be cauda equina. He’ll be pleased to know there’s nothing more invasive that I need to suggest today!’ Strengths of Statement

Weaknesses of Statement

Potential Improvements

Discussion: This interaction further demonstrates the need for mindful communication – the requirement for being not only present in the moment and making one’s own

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intentions/requirements/emotions known/understood, but also taking into consideration the perspectives of those who are being spoken to. The patient is profoundly deaf, and the consultant has incorrectly directed the conversation toward the sign language interpreter present, and not the patient. While the interpreter is a key participant in this scenario, it is important that the consultant regards them in a professional capacity and recognises that they are not an active member of the conversation. An interpreter serves only as a communicative link between themselves and the patient they are helping to facilitate. To this end, in order to demonstrate both common courtesy and respect for patient autonomy, the practitioner should speak directly to the patient, not the interpreter. Phrases such as ‘ask/tell them’ or speaking about the patient in the third person (e.g., ‘what he/she wants to do is …’ etc.) should be avoided. Failure to speak directly to the patient distances them from the conversation and has a negative effect on their senses of autonomy and control over both the situation, and any potential treatment options being discussed – which can directly affect not only patient engagement, but also their ability to provide informed consent. I was born deaf. Well, prematurely, and my hearing got damaged. I have been in situations where I’ve gone for an appointment or a meeting, and the person didn’t look at me at all but at the interpreter or whoever was with me – even if they weren’t an interpreter, like my kids, even when they were little. I once had an appointment and had asked for an interpreter, but they failed to get one for me – so they asked my 5-year-old to interpret! He was petrified. It’s general. Schools, job interviews, medical appointments. It’s more common than you think. I feel awful when these things happen. Angry and upset, even more for my kids being put into such unnecessary situations. –Anon Furthermore, the practitioner has once again failed to utilise Theory of Mind, by making the assumption that the patient is aware of what the conditions of disc prolapse, facet joint hypertrophy, and cauda equina syndrome are/entail. Finally, patient expectations were not defined, and the assumption has been made that the patient will be pleased with the assertion that they are not being recommended for surgery. In attempting to reassure with statistics, the practitioner has also inadvertently made the assertion that the patient’s case is not individual. A large proportion of the population may experience lower back pain, and while this can be reassuring in the sense that it displays a common problem which can be managed – the experiences of the general population are not the reason the patient has attended the clinic today. Revised Practitioner Statement: ‘Ok, so. Back problems. This has been quite a persistent theme for you for a few years, yes? I’m afraid back problems are really common – it’s something like 84% or 85% of people will have lower back pain at some point in their adult life. That does mean that often it’s just something we have to learn to live with – but sometimes it can be a little more sinister, too, so that’s why we carried out

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the MRI, just to have a look at what’s actually going on. So, if you look at the scan here, these are your vertebrae. In between each of those is a spongy piece of cartilage – a bit like a pillow – that acts kind of like a shock-absorber. This shadow here, well, that bulge is a disc prolapse. This means that one of these pillows of cartilage has been squashed out of place, and it’s compressing the nerves – which is why you’ve been experiencing pain and numbness. These other shadows, here, these are what we call joint hypertrophy. Basically, your joint has become swollen, and that’s pinching the nerves that come out from your spinal cord through your vertebrae. Now, these things can resolve themselves – and your symptoms have slowly been improving – so if we were to go in for a surgery now there might not actually be much left to scale away, and there’s also the risk of us doing more damage because your spinal cord is so delicate. I think swimming, physio, and if there’s another bad flare up – go straight to A&E because that might be something called cauda equina syndrome. That’s essentially where your nerves are so squashed they struggle to function, and it can affect certain functions like bladder and bowel. I’ll give you an information leaflet which details symptoms to look out for. How do you feel about what we’ve discussed today?’ Statement Improvements



Potential Further Improvements

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Written Correspondence General Hospital General Hospital Way Port General G3N H05 Neurosurgery Department neurosurgery​@generalhospital​.s​cot Letter ID: 744-LBN-376 Dear General Practitioner, I had a face-to-face consultation with this patient today, assisted by a sign language interpreter. I will also be sending this gentleman a copy of this letter for his information. Diagnosis: Large central L4/5 disc prolapse and facet joint hypertrophy. Symptoms improving. Management Plan: Discharge This gentleman is 45 years old and works a manual job for a local construction firm. Since his mid-30s he has experienced flare ups of lower back pain which in recent years have become more frequent. For the past several months he has been experiencing lower leg pain and also bilateral paraesthesia in the lateral border and inside regions of the foot. The lower leg pain has now, however, entirely resolved, and generally he is doing better. He denies any bladder/bowel problems and has no numbness in the saddle area. He has had physiotherapy and spinal adjustment therapy. On examination, straight leg raise was positive from about 90 degrees, but he had normal sensation to light touch, normal power in all myotomes of the lower limbs and symmetrical knee and ankle jerks. The MRI scan shows the above changes. Because the symptoms are much improved, I don’t think an operation at this point would be indicated and, in any event, the patient is not too keen on going for surgery in any case. I would recommend he undertakes low-impact exercise such as walking and swimming, be mindful of posture, undertake physiotherapy as required, and perhaps give yoga and Pilates a try if he feels comfortable doing so – anything really that stabilises his core. I explained that the facet joint hypertrophy as well as the fact that the L4/5 disc is degenerate would all account for back pain and surgery would only be indicted for leg pain or for worsening neurological deficit, particularly weakness but probably not so much numbness or of course as an emergency should he develop cauda equina compression which could present as loss of bladder/bowel functions or numbness in the saddle area, i.e., the private area or around the bottom. In that case he would have to go to A&E straight away to be investigated and then potentially undergo surgery as an emergency, but I told him that this is a very unusual diagnosis and unlikely to happen. A conversation with his employer about adapted duties may be beneficial. I have not arranged for any further follow-up but would be happy to see him again should the need arise. Yours sincerely, Consultant in Neurosurgery

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Written Correspondence Positives

Written Correspondence Discrepancies

Potential Consequences



NOTES 1 General Medical Council, Cardiopulmonary resuscitation (CPR) (2019) [accessed 22 November 2022] 2 R. F. Baumeister and K. D. Vohs, ‘Displaced aggression in Encyclopedia of social psychology, Vol. 1 (SAGE Publications, Inc., 2007), pp. 258–258 3 Linda Geddes, Why do Brits talk about the weather so much? (2015) [accessed 29 November 2022]

Chapter 8

The Art of Reflection

This chapter is paired with the Appendix, which contains structured reflective templates which will be useful for both personal and professional portfolio development. Reflection is, undoubtedly, a key feature of many forms of art. Take literature, for instance. The process of writing is one of drafting, re-drafting, cutting, editing, and improving upon a piece until the author’s final message is satisfactorily revealed. A first draft is very rarely perfect; rather, it is necessary for a writer to constantly reflect upon their progress, critique their words, and painstakingly fine-tune their work based upon these reflections. Scottish author Jan-Andrew Henderson is a prolific writer, who produces material across a variety of genres, including historical, young adult, fiction, and non-fiction categories, and across his career to date has won the Doncaster Book Prize, the Aurealis Award, and the Royal Mail Award – Britain’s biggest children’s book prize. He describes the act of reflection within literature as a mirror with which we can view the world around us, safely explore our options and responses, and thus shape and reshape our experiences within that world: Writers have a neat trick. On paper, they safely explore feelings, weigh up outcomes and experiment with versions of themselves in wildly different situations. And if they don't like the results, they do another draft. Then another … until they get it right. In reality the stakes are higher, and we only get one chance. So, we agonise over how we will act or what we should have said. That's self-reflection. It allows us to make multiple drafts of reality and so, hopefully, improve the narrative of our lives.

DOI: 10.1201/9781003292067-8

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As we have now well established, engagement with the arts and humanities can improve our world view, develop our skills of empathy, compassion, understanding, and self-awareness, and make us far better communicators. Just as a writer will make multiple drafts, by giving us a window into other people’s lives, the humanities allow us to redetermine our world view – something that we are all individually forming and re-forming throughout our lives. It is by reflecting upon the people, stories, and experiences that we come into contact with which enables us to fully unlock the wealth of potential alternate specialisms provide. But how best to reflect? If you’re not used to engaging with other media and specialisms, they can often appear daunting. Poetry, for instance, can at first sight often appear a tangled web of indecipherable language, and engagement with it for many might feel futile, or frustrating. Take the following example – a short nonsense poem by Victorian writer, Edward Lear: ‘THE OWL AND THE PUSSY-CAT’

The Owl and the Pussy-cat went to sea

In a beautiful pea-green boat, They took some honey, and plenty of money, Wrapped up in a five-pound note. The Owl looked up to the stars above, And sang to a small guitar, ‘O lovely Pussy! O Pussy, my love, What a beautiful Pussy you are, You are, You are! What a beautiful Pussy you are!’ Pussy said to the Owl, ‘You elegant fowl! How charmingly sweet you sing! O let us be married! too long we have tarried: But what shall we do for a ring?’ They sailed away, for a year and a day, To the land where the Bong-Tree grows And there in a wood a Piggy-wig stood With a ring at the end of his nose, His nose, His nose, With a ring at the end of his nose. ‘Dear Pig, are you willing to sell for one shilling Your ring?’ Said the Piggy, ‘I will.’ So they took it away, and were married next day By the Turkey who lives on the hill. They dined on mince, and slices of quince, Which they ate with a runcible spoon; And hand in hand, on the edge of the sand, They danced by the light of the moon, The moon, The moon, They danced by the light of the moon.

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It is important to remember that art in myriad forms – particularly poetry and literature – is subjective; what one person gleans from a piece may be very different to the message taken away by someone else. The above poem, famously, has no literal meaning. It is even composed of words which have no meaning – ‘runcible’ being a creation of Lear’s which still invites debate as to his intended definition. But we don’t need to fully understand this poem in a literal sense to be able to take value from it. It is up to us, as the reader, to determine how this poem makes us feel, and which messages we wish to take from it. To help us formulate our thoughts, we can use Bain et al.’s 5Rs of Reflection:1 Reporting, Responding, Reasoning, Relating, and Reconstructing. 1. Reporting – what is it? This is a nonsense poem. It tells the story of an owl and a cat who fall in love, and sail to a far-off land to be married by a turkey, overcoming the obstacle of not having a ring by using one taken from a pig’s nose. 2. Responding – what is your emotional response? This story makes me feel whimsical and, particularly when I read it to children, I feel fun and silly. Despite this it still feels quite romantic and, on another level, I feel quite nostalgic while reading it. 3. Reasoning – explain these emotional responses. The thought of two individuals overcoming obstacles (such as crossing the sea and finding a ring) in order to be together makes me feel quite romantic. It’s very sweet. The image of the animals dancing together in the moonlight at the end makes me feel joyous and happy. It also makes me feel nostalgic for my childhood, and this makes me feel a little bit sad and thoughtful. 4. Relating – how does this relate to your life/the world around you? I recently ended a long-term relationship, and the thought of a couple being so in love makes me feel happy, but also a little bit sad. This is similar to why I feel sad thinking about my childhood, as I miss several relatives who have since passed away. This poem lets me think about what it would be like to want to run away with somebody, and I think it makes me appreciate the strength of feeling people can have for one another regardless of who they are or what their background is. 5. Reconstructing – what have you learned? I have realised that I can often be quite judgemental of younger people, particularly teenagers in their first relationships, and often think them to be exaggerating their feelings and emotions. This poem has helped me realise that I may be viewing these individuals from a jaded-perspective due to my

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own circumstances. In future, I will try and be more mindful of the way I am responding to people in these circumstances. This method of reflection can be useful when interacting with any new medium, the following being some further examples: Film: ‘(Reporting) I watched a film called Fly Away Home, about a little girl who hatches a clutch of goose eggs. Her father helps her teach the geese to migrate, by teaching her how to fly a microlite plane. (Responding) I enjoyed this film; it made me cry! (Reasoning) I had a particularly close relationship with my own father, and seeing the relationship between the characters on-screen made me realise how precious this relationship is. It also made me realise the extent to which many parents will go to try and protect and nurture their children. (Relate) I often have to deal with very headstrong parents in my clinics, and I can find this frustrating. (Reconstructing) This film has taught me that I should be more mindful and empathetic when interacting with a parent who may be more vocal or headstrong, because they are only doing what any parent would do to safeguard their child. I have lost sight of this recently, and I think this film helped ground me.’ History: ‘(Reporting) I visited Auschwitz-Birkenau because I feel it’s a place everyone should see. (Responding) To put myself in the footsteps of so many thousands of murdered men, women, and children was incredibly surreal, and humbling. It was incredibly hard to imagine how anyone in those circumstances would be able to hold on to any hope. (Reasoning) These were ordinary people, living ordinary lives, and it is only a twist of fate that I was reading their stories, and not living them myself. (Relate) With that in mind, there are significant atrocities taking place in the world today. (Reconstructing) This experience taught me that I should be more vocal where I see social injustice, racism, or persecution, and that it is only by standing up for equality and what we believe in that we can prevent this awful period of human history from repeating.’ Art: ‘(Reporting) My grandfather was a talented artist, and I have one of his paintings on my wall. It is of Warwick Castle, one of my favourite places to visit as a child. (Responding) This painting makes me feel very proud and happy, but also very nostalgic and sad. (Reasoning) My grandfather was very skilled, and I feel like having the painting with me keeps a piece of him alive. This makes me feel nostalgic and sad as I think back over my childhood and wish he could comment on my life today. (Relate) Not everyone has things to remember lost relatives by, and this painting makes me very lucky. (Reconstructing) This painting teaches me that I should be more appreciative of the little things, and that money and cost doesn’t always indicate the true value of an item. In a ward environment this is particularly important when families are grieving for relatives, and keeping personal belongings safe and organised is one way I can help make bad situations slightly easier.’

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Reflecting upon the arts and humanities we encounter can assist our clinical practice in many ways – be they small, or profound. Maybe a podcast you listened to has presented you with a new way of approaching a difficult subject; maybe you learned something which challenged preconceived notions; or maybe a book provided you with an insight you hadn’t previously considered. Keeping track of our reactions to information we find new, surprising, or useful is a fantastic way to help us process and learn from it. Within the world of medicine and healthcare provision, career reflection is, undoubtedly, one of the most important aspects of your clinical practice and should be viewed as a cornerstone of your professional success. Much like the act of writing a first draft, our communication is also very rarely perfect. Particularly when we are faced with new or unfamiliar scenarios, it is only by making time for detailed selfreflection that we will be able to hone our skills – determine what went well, what could have been improved, what we learned, and what could potentially be done differently next time. By mastering the skill of self-reflection, we are able to not only identify positive interactions and further develop pre-existing skills, but also pinpoint changeable aspects of our more negative interactions, highlight areas we need to work on, and as such enable forward planning, personal growth, and professional development. Furthermore, being able to reflect on experiences which we feel went badly can enable us to better process our emotions regarding them. This can, in turn, help us create healthy coping mechanisms and strategies with which to tackle difficult, emotionally demanding aspects of healthcare provision. My father was in the Fire Brigade for many years. He once told me about having to clear a building which had burned down, and his crew had been unable to reach many of the people inside. Subsequently, a lot of the work involved locating and removing the bodies of the victims from the building. I asked him how he coped with this experience, and he responded, very simply – ‘I didn’t start the fire.’ He explained that, while he couldn’t control the circumstances, he could do his best to ensure he was the best version of himself available to deal with the consequences. I think that was one of the most insightful things he ever said to me, and it’s a mindset that’s so applicable to healthcare provision. While inevitably it must be remembered that you did not cause the situations your patients find themselves in, you can strive to do your best for them while they are under your care; you can ensure your own continual growth and improvement; you can empathise with the emotions of others. If something goes wrong with one interaction, your next interaction will be better. You didn’t start the fire, but you can continuously strive to make bad situations – maybe the worst days of someone’s life – a little bit easier – and that’s an incredible thing. – Charlie Guy, author

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When we, as adults, experience strong negative emotions we often try to ‘take a step back’ and analyse our experience – seeking to understand our experiences, and emotional responses to those experiences. 2 By understanding our emotional responses we are better able to regulate our future responses, and our reactions to the consequences. Take a moment to think about times where you were angry, or upset, following a difficult interaction, and complete the following prompts. Try to complete two examples – one where you felt your emotions were negative, and one where you felt they were more positive. What happened?

What emotions did I experience?

Were these helpful emotions?

How could I reframe my experience?

What will I do next?

(Example:) I made a mistake in a meeting, prompting several colleagues to laugh.

I felt stupid, and ashamed at having made such an obvious mistake.

No. These emotions made me withdraw from the conversation.

I am not stupid. My colleagues were wrong to react in the way they did. I am only human, and everyone makes mistakes.

I will speak to my colleagues about how they made me feel and make an effort to be more involved in the next meeting.

(Example:) I had to break bad news to a very young patient.

Anger, sadness, frustration, injustice. I felt like a bad practitioner.

Yes. They helped me recognise that I am emotionally drained.

I am upset because I care about my patients. I have to remember I did not cause their illness.

I will seek support from my colleagues and/or management.

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Engaging consistently in reflective practice enables us to recognise and respond to changes in societal pressures/beliefs, examine and develop our own moral and ethical stances, and frame or reframe interactions or experiences – analysing our feelings and actions in more positive, productive ways.

I once worked as a receptionist in a palliative care department. The nurses were all incredible – there was always such a positive vibe to the office, even despite the terribly sad nature of the job. But I remember I had to call a patient one day to change his appointment time, and as he answered the telephone I reflexively asked him how he was that day. He responded, very abruptly, with ‘I’m f***ing dying – how do you think I am?’ I was shocked, and for the rest of that day I felt awful. I mean, I really beat myself up about it. Thinking about it now, though, this patient had a huge emotional load to carry, and I was just a voice over the telephone, calling from a department he had never wanted to have to deal with in the first place. So, a really easy target for his frustration. On top of that, I realised I probably had sounded quite flippant – how often do we ask that question – ‘are you alright?’ – in passing, and not really stop to listen to the answer? Now, rather than beat myself up about how badly this interaction went, I try my best to learn from it. While I was working in that department, I never asked another patient how they were. Instead, I would introduce myself, and then go into something along the lines of ‘I’m calling to give you your appointment date, but before we go into that is there anything else you need from us right now?’ – Anon

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a. Jean-Dominique Bauby – The Case of Patient A Patient A was admitted to the stroke unit, having suffered a devastating brainstem stroke. Although they survived, they had been left with locked-in syndrome – a rare neurological disorder, in which there is complete paralysis of all voluntary muscles except for the ones that control the movements of the eyes. Individuals with locked-in syndrome classically cannot consciously or voluntarily chew, swallow, breathe, or speak, but remain fully alert and aware of their environment. They can hear, and see, and comprehend, and affected individuals can communicate through purposeful movements of their eyes, or blinking. The relatives of Patient A would come and sit with them, for many hours at a time. This was an extremely distressing time for the family, and they dedicated themselves to spending as much time with Patient A as possible. As such, it was rare for hospital staff to find Patient A in their room alone, with several family members taking it in turns to remain with them overnight as a matter of routine. Knowing that Patient A could not eat or drink, both visitors and staff were vigilant in never bringing food into the room – the concern being that they would be tormented by smells and become frustrated at not being able to taste or eat as they would have done prior to their brain injury; however, having such lengthy hours in a hospital side-room without even a cup of tea, and having to leave the ward for mealtimes, placed a visible strain on Patient A’s relatives and friends; who, already distressed, would suffer in silence, often for many hours at a time. While staff did their best to comfort and support them, the strain of their situation was visible. During the third week of Patient A’s stay in hospital, by chance, the attending consultant came across a copy of a book entitled The Diving Bell and the Butterfly. The Diving Bell and the Butterfly is the diary of a French journalist named Jean-Dominique Bauby who, on 8 December 1995, suffered a catastrophic brainstem stroke, and fell into a coma. When he regained consciousness three weeks later, all he could move was his left eyelid. With the help of his nurse, Bauby spent most of 1996 documenting his experiences trapped inside his own body, letter by letter, blinking as an alphabet was repeatedly read out to him. The Diving-Bell and the Butterfly was published in France on 6 March 1997 and was immediately hailed as a masterpiece. Three days later, Jean-Dominique died. Within the book, as well as descriptions of personal challenges and deep emotional struggles, Bauby made records of ordinary things in his life which gave him joy. There is a moment where he recounts the smell of chips: ‘My nostrils quiver with pleasure as they inhale a robust odour – intoxicating to me, but one that most mortals cannot abide … I never tire of the smell of frying potatoes.’3 Contrary to everything the attending consultant had assumed about food smells – their ability to distress and antagonise – this patient, Bauby, who had been unable to delight in tastes, instead now delighted in smells. Back in the side-room of the hospital, Patient A was asked – for the first time – ‘do food smells bother you?’ The answer was established – ‘no.’ From something which had previously been undiscussed, and unconsidered, visiting hours were revamped. The family was not only able to remain with Patient A for longer periods, these periods were now also more comfortable for them. Furthermore, relatives began bringing foods they knew Patient A enjoyed, and conversations and reminiscences were made easier as the subject of food and drink no longer had to be avoided. What a difference a few lines from a book, a polystyrene cup of hot chocolate, and a pre-packed sandwich can make. Medicine is both a technical, scientific discipline, and also a moral, humanistic one.4 Medical professionals must understand that they don’t merely treat conditions – but also the people within whom these conditions exist. Reflection, like any skill, must be practised and refined – and much like other modes of learning, not everyone will choose to reflect in the same way. It doesn’t matter how formally or informally you write your reflections. Their purpose is to help you explore your own feelings around situations, and what is a good reflective mechanism for one individual, may not best suit another. It is therefore helpful to look at several reflective models and find one which suits – or find one to adapt to suit your individual preferences.

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NOTES 1 Lisbeth Amhag, ‘Student reflections and self-assessments in vocational training supported by a mobile learning hub’, International Journal of Mobile and Blended Learning, 12 (2020), 1–16 2 Rachel E. White, Ethan Kross and Angela L. Duckworth, ‘Spontaneous self-distancing and adaptive self-reflection across adolescence’, Child Development, 86.4 (July/August 2015), 1272–1281. Published by: Wiley on behalf of the Society for Research in Child Development Stable URL: https://www​.jstor​.org ​/stable ​/24696101 [accessed 23 November 2022] 3 Jean-Dominique Bauby,  The Diving Bell and the Butterfly, trans. by Jeremy Leggatt (London: Fourth Estate, 1997), p. 96 4 R. Charon and P. Williams, ‘Introduction: The humanities and medical education’, Academic Medicine 70.9 (1995), 758–760.

Chapter 9

Reflective Models

a. ROLFE ET AL.’S THREE-STAGE MODEL OF REFLECTIVE PRACTICE (2001) Rolfe et al.’s three-stage model of reflective practice (Rolfe’s model) is the most basic of the reflective templates that is discussed here. Rolfe’s model can form the basis of an excellent habit-forming exercise when practised as a matter of routine. It consists of three stages: What? So what? What next? (See Figure 9.1​.)

What?

So What?

What Next?

What happened? How did I feel? What went well? What went badly?

What happened next? How did I feel? What did I learn?

What has this taught me? How do I feel? What will I do next time?

FIGURE 9.1  Rolfe’s Model

DOI: 10.1201/9781003292067-9

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The fact that Rolfe’s model is so simplistic is its key feature, and if you’re not used to practising structured reflection it’s a fantastic starting point. It is important to take the time to reflect on both good and bad situations and scenarios as our interactions are rarely, if ever, black and white. You may feel something went perfectly – and that’s fantastic – but reflecting back upon it properly may help you identify small changes to be made – or confirm elements for standard use within your future practice. When using Rolfe’s model, you should structure your thinking in the following terms: 1. What? What happened? Describe the interaction. How did you feel about it? What do you think went well and, conversely, what do you think went badly? Remember, an interaction which you thought overall was good may have negative aspects to it, and vice versa. 2. So what? What happened next? What was the outcome for the patient/person you were speaking with, and how did your actions/interaction affect this outcome? How did you feel about this outcome? Were you pleased, disappointed, proud, frustrated (etc.)? What did you learn from this experience? 3. What next? What has this interaction taught you? What strengths/weaknesses in your communication have you identified? What areas for improvement have you found? How do you feel about this? When presented with a similar situation – what will you do next time?

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Example Reflection Using Rolfe’s Model What? What happened? Describe the interaction. How did you feel about it? What do you think went well and, conversely, what do you think went badly?

So what? What happened next? What was the outcome for the patient/person you were speaking with, and how did your actions/interaction affect this outcome? How did you feel about this outcome? Were you pleased, disappointed, proud, frustrated (etc.)? What did you learn from this experience?

What next? What has this interaction taught you? What strengths/weaknesses in your communication have you identified? What areas for improvement have you found? How do you feel about this? When presented with a similar situation – what will you do next time?

While I was working in A&E, I was presented with a teenage girl, accompanied by her teenage boyfriend. She was unfortunately experiencing a miscarriage. As they were so young, I assumed that this had been an accidental pregnancy. I took the time to give them detailed advice on the contraceptive methods available to them. I also gave them several leaflets in this regard. It became apparent, however, that this had, in fact, been a planned pregnancy, and a very wanted child. In applying my own opinions to their situation, I had inadvertently made both my patient and her partner very uncomfortable and had allowed my preconceived notions and personal preferences to affect my view of their situation, which made them feel judged. I felt very bad about this and regretted my actions even though they had been well intentioned. Having realised my mistake, I went back and spoke to them again, being sure to apologise for making the assumption, and discussed early miscarriage and ways to improve general health. This situation taught me that I should be more aware of my personal opinions and how they may affect my clinical practice. While I may not necessarily agree with my patients’ choices, they are coming to me for help, and I need to be more mindful of this. In future, as I did here, I will not hesitate to hold myself accountable for poor communication. Should I face a similar situation again I will be more careful when taking clinical history and try to be sure of an individual’s actual feelings rather than make an assumption based upon my own views.

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b. KOLB’S REFLECTIVE MODEL OF EXPERIENTIAL LEARNING (1984) Kolb’s Reflective Model of Experiential Learning (Kolb’s model) is a step up from Rolfe’s model, in so far as it is an excellent method with which to apply previous knowledge to recurrent experiences; essentially, ‘what happened last time?’ and ‘what will you do next time?’ Kolb’s model consists of four stages: concrete experience (what happened?), reflective observation (how did you feel about it?), abstract conceptualism (why did you feel this way?), and active experimentation (what will you do next time?)1 (see Figure 9.2​). Kolb’s model has the benefit of being able to not only focus and apply learned knowledge to repeated experiences, but also helps you apply specific learning to more general situations. The model allows you to both reflect on individual experiences and also challenge and establish broader concepts. When using Kolb’s model, you should structure your thinking in the following terms: 1. What happened? Describe the interaction. Have you experienced this before? If so, what happened the last time you experienced this? What was the outcome for the patient/person you were speaking with, and how did your actions/interaction affect this outcome?

What happened?

How do you feel about what happened?

What will you do next time?

Why do you feel this way? What did you learn?

FIGURE 9.2  Kolb’s Model

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2. How do you feel about what happened? What do you think went well and, conversely, what do you think went badly? How did you feel about the overall outcome? Were you pleased, disappointed, proud, frustrated (etc.)? 3. Why did you feel this way? What did you learn? What elements of this interaction led to you feeling this way? Are they pleasant emotions, or more negative ones? What have you learned from this scenario? What have you learned about yourself and your clinical practice? 4. What will you do next time? What has this interaction taught you? Has previous experience played a role in the outcome of this interaction? What strengths/weaknesses in your communication have you identified? What areas for improvement have you found? How do you feel about this? When presented with a similar situation – what will you do next time? Example Reflection Using Kolb’s Model What happened? Describe the interaction. Have you experienced this before? If so, what happened the last time you experienced this? What was the outcome for the patient/person you were speaking with, and how did your actions/ interaction affect this outcome?

‘While I was working in A&E, a young woman presented undergoing miscarriage. She had presented to the department with her equally young partner. I have experienced a similar scenario before, and in the case of my previous patient this had been an unplanned pregnancy. This experience, coupled with my own personal opinions, negatively impacted my actions. This time I failed to ensure I took a comprehensive patient history and did not clearly establish the couple’s feelings around both the pregnancy and the miscarriage before continuing the consultation. I gave them a detailed consultation, and take-away literature, about contraceptive methods available to them, and at this point they became visibly distressed, and it was clear that I had made them both feel uncomfortable and judged. Having realised my mistake, I went back and spoke to them again, being sure to apologise for making the assumption, and discussed early miscarriage and ways to improve general health.’

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How do you feel about what happened?What do you think went well and, conversely, what do you think went badly? How did you feel about the overall outcome? Were you pleased, disappointed, proud, frustrated (etc.)?

‘I am disappointed with myself for not exploring their feelings in more detail, and inadvertently causing them more upset and distress.’

Why did you feel this way? What did you learn?What elements of this interaction led to you feeling this way? Are they pleasant emotions, or more negative ones? What have you learned from this scenario? What have you learned about yourself and your clinical practice?

‘I made an assumption based on a previous experience and personal opinion and should have known better and remembered that each patient is an individual.

What will you do next time?What has this interaction taught you? Has previous experience played a role in the outcome of the interaction? What strengths/weaknesses in your communication have you identified? What areas for improvement have you found? How do you feel about this? When presented with a similar situation – what will you do next time?

‘My previous experience definitely played a role in this interaction, and as a result I incorrectly navigated my understanding of my patient’s needs and how I communicated with them.

This was an unpleasant experience for both the couple and myself, and this situation has taught me that more detail is always preferable, and that my history taking can’t fall short even when I’m busy. It has also reinforced the idea that while I may not necessarily agree with my patients’ choices, their age shouldn’t be a foundation on which I form an assumption about them.’

While I am pleased to have held myself accountable and satisfied that they eventually left the department having been given the advice they sought, should I face a similar situation again I will be more careful when taking clinical history, and try to be sure of an individual’s actual feelings rather than make an assumption based upon my own views.’

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c. GIBBS’ REFLECTIVE CYCLE (1988) Gibbs’ Reflective Cycle (Gibbs’ model) is the most complex of the reflective templates which is discussed here, but also one of the most well-known, and in-depth. Its complexity is designed to enable deeper, critical thinking around situations and experiences in order to provide much more comprehensive reflections and, as a direct result, better formulated future action plans. Gibbs’ model consists of six stages: description (what happened?), feelings (what feelings were experienced?), evaluation (what was good/bad about this interaction?), analysis (what actually happened?), conclusions (what does this mean?/what did you learn?), action plan (what specific actions will you take in the future?). When using Gibbs’ model, you should aim to include as much detail as possible, reflecting upon not only your own actions but also the actions, responsibilities, and roles of the people around you. It is helpful, therefore, when using Gibbs’ model, to create a list of sub-questions for each category. Such sub-questions can include things like: •

Who else was there?

•

What were you/they responsible for?

What was their experience?

What was your experience?

What would they want?

What will you do next?

What have you learned? What are they likely to take away from this?

FIGURE 9.3  Gibbs’ Model

How do they feel about what happened?

How do you feel about what happened?

What was good/bad?

What actually happened? What was the outcome for them?

What did they see as good/bad?

Reflective Models   

•

How did you feel about the situation? How did they feel?

•

Were there other factors which affected the outcome?

•

What research could you do?

•

Who could you contact now?

197

For the purpose of this text/activity, Gibbs’ model has here been adapted to reflect the even greater detail of dual perspectives – yours and the patient/individuals. This adaptation is, however, merely a suggestion, and you should feel free to tailor all of these templates to suit your own needs based upon what it is you want to reflect upon, and what the outcome is that you wish to achieve (see Figure 9.3​). Your Perspective

Their Perspective

1.

What happened?

Be as detailed as possible when describing this interaction. Who else was involved? Where were you? What was it you wanted to achieve?

How would they have described the experience? Did they have a clear understanding of your aims? What were their aims?

2.

What feelings were experienced?

What do you think went well and, conversely, what do you think went badly? How did you feel about the overall outcome? Were you pleased, disappointed, proud, frustrated (etc.)?

How did the other people involved feel about the interaction? What could they have viewed as going well and, conversely, what could they thought to have gone badly? Were they pleased, disappointed, proud, frustrated (etc.)?

3.

What was good/bad about this interaction?

Every interaction will contain both positive and negative elements. Even if you feel the overall outcome was one extreme or the other, take time to pick out individual elements you may otherwise overlook.

What elements would the other individuals involved feel were positive/negative? Why?

4.

What actually happened?

What was the outcome of this interaction? It may be helpful to imagine you are hearing about this experience from a friend and commenting on it from an outside view.

Does it match up with yours?

5.

What does this mean? What did you learn?

What elements of this interaction led to you feeling this way? What have you learned from this scenario as a result?

What is the consequence of interaction for the other people involved? What emotions are they likely to take away from this interaction?

6.

What specific actions will you take in the future?

Be as specific as possible in this section. You should use this section to outline the strengths/weaknesses in your communication which you have identified, as well as the areas for improvement you intend to work on. State a specific plan as to how you intend to achieve these aims.

What would the other individuals involved like to see happen in the future?

198   The Art of Medical Communication Example Reflection Using Gibbs’ Model What happened?

Your Perspective

Their Perspective

‘While working a night shift in A&E, I was called to see a 17-year-old girl, who was accompanied by her 19-year-old boyfriend. She had a positive pregnancy test but PV bleeding. After performing blood and urine tests, I was able to confirm that she was experiencing a miscarriage.

‘Having been actively trying for a baby for some time, the patient was distressed to begin experiencing abdominal cramps and PV bleeding and attended A&E with her partner in an emotional state.

As they were so young, I assumed that this had been an accidental pregnancy. This had also been my previous experience of the emotions of people experiencing teenage pregnancy. I gave the couple a detailed consultation, as well as several information leaflets about contraceptive methods available to them, and at this point they became visibly distressed, and it was clear that I had made an incorrect assumption.

What feelings were experienced?

What was good/ bad about this interaction?

Having had a confirmed diagnosis of miscarriage, the couple required time to process how they were feeling about this situation. They may have had questions arising such as why this had happened, and what they could do to prevent a future miscarriage. Instead of being able to ask these questions, they were instead faced with a lecture on contraceptive methods available, and instead of being supported in respect of grief were given leaflets aimed at the prevention of future pregnancy.

Having realised my mistake, I went back and spoke to them again, being sure to apologise for making this assumption, and discussed early miscarriage and ways to improve general health.’

While they did receive an apology for this, the experience was made more difficult for them by this initial misunderstanding.’

‘I am embarrassed, and disappointed with myself for not exploring their feelings in more detail, and inadvertently causing them more upset and distress.

‘My actions made the couple feel uncomfortable and judged for the lifechoices they were making.

I am pleased that I held myself accountable for this miscommunication.’

Despite being grateful to have received an apology they remained resentful of the experience.’

‘I was able to recognise that I had made an error and speak to them again before they left the department.

‘The information initially imparted was not in keeping with their expectations, given that this was a wanted pregnancy.

I was clear when discussing lifestyle choices such as smoking cessation and maintenance of a healthy diet/exercise regime in relation to trying to conceive.

They were grateful at having received an apology once I had realised my mistake.’

I made my patient feel uncomfortable, and resentful of the service she had attended for help and support.’ What actually happened?

‘This was a simple mistake to make, and one that is easily avoided in the future. I still provided the couple with comprehensive information and was able to address the misunderstanding as soon as it was realised.’

‘Despite the misunderstanding, the couple received the care they needed, as well as comprehensive information which enabled them to make informed decisions about their future choices.’

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Example Reflection Using Gibbs’ Model Your Perspective What does this mean? What did you learn?

Their Perspective

‘My previous experience definitely played a role in this interaction, and as a result I incorrectly navigated my understanding of my patient’s needs and how I communicated with them.

‘The couple are likely to have left the department feeling sad about the miscarriage and upset about having to defend their life choices to a practitioner who they had turned to for help.

While I am pleased to have held myself accountable and satisfied that they eventually left the department having been given the advice they sought, should I face a similar situation again I will be more careful when taking clinical history, and try to be sure of an individual’s actual feelings rather than make an assumption based upon my own views.

Given that they were accepting of the apology and the misunderstanding was fully explained to them, this is unlikely to affect their future actions in respect of seeking support in further healthrelated situations; however, this was an unpleasant interaction for them and it will have made their experience of an already difficult time even harder to navigate and process, and they may relate their negative experience to friends and relatives, which could in turn affect a more collective view of the care provided at this department.

I made an assumption based on a previous experience and personal opinion and should have known better and remembered that each patient is an individual. This was an unpleasant experience for both the couple and myself, and this situation has taught me that more detail is always preferable, and that my history taking can’t fall short even when I’m busy. It has also reinforced the idea that while I may not necessarily agree with my patients' choices, their age shouldn’t be a foundation on which I form an assumption about them.

They did, however, also leave fully informed of their options both in respect of contraception and actively trying to start a family, including information and support around smoking cessation, healthy diet and exercise, and a discussion around when it would be appropriate to get in contact with their GP concerning issues of conception.’

I also recognise, however, that I feel the way I do because I believe I also have a duty of care and encourage my patients to make the correct decisions, and I could be more informed on what support services are available to couples in this situation.’ What specific actions will you take in the future?

‘I will take greater care in respect of my history-taking. I will be sure to establish the patient’s actual thoughts and feelings before making an assumption. I will be more mindful of my own thoughts and opinions and take greater care to avoid letting them affect my decision making. I will research the websites for services such as Brook, Tommy’s, and the Family Nurse Partnership to ensure I am up to speed with what support is available for those experiencing teenage pregnancy.’

‘The patient deserves my full attention, despite the overall business and pressures of the ward. The patient wants me to establish their actual thoughts and feelings about their situation, not make broadbased assumptions based on my own preconceived thoughts, experiences, and ideas. The patient does not want to feel judged or have to defend their life choices in the midst of an already distressing situation. The patient would want to be as informed as possible about all options available to them. Contraceptive advice could also be appreciated if appropriately framed.’

NOTE 1 [accessed 10 December 2022]

Chapter 10

Conclusion

Throughout this book, we have explored the relationship between the humanities and sciences and established that while anyone can appreciate the look of a painting, or enjoy the plot of a film, information relating to health, medicine, and the sciences – to the layperson – can often appear out of reach. It is my hope that, having come this far on our journey together, you now have a greater understanding for, and appreciation of, the role the arts and humanities play not only in terms of communication around health and wellness, but also the myriad ways they improve and enrich our lives on a daily basis – both as individuals, and as a wider, collective society. By paying attention to the stories of other people, societies, and cultures – be those stories historical, fictional, biographical, or fantastical – we are better able to understand, interpret, and respond to the world around us, and apply the information we learn as a result to modern day clinical situations and scenarios. The largest proportion of NHS complaints received to date are regarding communication, and clearly something must be done to combat this. Where poor communication is endemic, however, we have also established that it is preventable. The humanities encompass a vast array of subjects, including (but not limited to) specialties such as language and linguistics, literature and the classics, art, history, law and politics, international relations, the visual and performing arts, music, religious studies, anthropology, psychology and sociology, media studies, journalism, feminist studies, cultural studies – the list goes on. Some of these we have explored together within these pages, and others are keenly awaiting your discovery. Where many of these subjects at first glance may seem entirely disparate from each other, when we take a closer look, we can see that they are all intricately interlinked, and the skills learned in one specialism can easily feed into and enhance another. DOI: 10.1201/9781003292067-10

C onclusion   

201

Your job as a practitioner requires you to be highly skilled in multiple areas, and amidst the pressures of a successful medical career it is easy to let your skills of communication tarry as an afterthought. But communication cannot be an afterthought. Every individual you come into contact with will have unique communicative preferences and needs, and your response to any situation may require different things from you at different times. What is appropriate for dealing with one scenario may be inappropriate for dealing with another and, by this stage, it should be well established that engagement with the humanities – with visual art, literature, history, law, film, music, etc. – can assist greatly in helping you navigate not only communicative situations but also ethical issues and complex circumstances such as acute distress, and practitioner wellbeing. In the latter regard, thinking about our own narrative journeys can play a key role in our ongoing personal and professional development and how we view ourselves in relation to the individuals we meet around us which can, in turn, help us create healthy coping mechanisms and strategies with which to tackle difficult, emotionally demanding aspects of our jobs. Human beings have an incredible propensity for language – and how beautiful our language is. We can convey complex ideas, thoughts, concepts, and emotions; we recognise the past, and discuss and contemplate the future. Most importantly – we tell stories. A large part of our social interaction hinges on the art of storytelling. From biographies to personal statements, memories to eulogies – we frequently think of, and refer to, our lives as stories, and thinking about our lives in terms of narrative can help provide structure and meaning where otherwise we might struggle to comprehend the world around us. In relation to health and wellbeing, narrative can be used to promote the understanding of topics such as (but, again, not limited to) diagnoses, treatment options, ongoing lifestyle considerations, and positive habit forming. Communication builds communities and cultures, and bridges continents – and yet, as we have established, just because we all have the ability to communicate, does not mean that we are all born communicators. Good communication is a skill set which needs to be nurtured and developed – through practice, experience, and reflection. Human beings are social creatures, and throughout our lives we are motivated by the desire to increase positive experiences and decrease negative ones. Engagement with the humanities can help us promote these positive experiences as we learn to analyse, assess, and respond to individual and societal narratives, and better understand the ever-changing world around us, as well as our roles within it, our moral values, and our spiritual/religious understandings and needs. While our ability to communicate can bring us into contact with new people, our mastery of the humanities is vital in enabling us to decode the raw data we collect and promote equality, tolerance, and social justice between individuals, communities, and cultures.

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We can consider communication to be like an iceberg: the interactions we have constitute only 10% of what is being expressed, and the other 90% lies below the waterline. Seeing as much as we can of the whole picture helps us make informed choices about how best to approach situations; what is or isn’t appropriate; what adaptations we could make – or where it is simply necessary for us to take a step back. The humanities are the study of being human – an examination of what makes us ‘us,’ in more than just the biological sense. And medicine, in all its forms, is also so much more than just biology. Within the world of medicine and healthcare provision, reflection upon ourselves, our working practices, interactions, and the world around us is vital, and should be viewed as a key skill to be mastered. In mastering the skill of self-reflection, we are able to not only identify positive interactions and further develop pre-existing strengths, but also pinpoint changeable aspects of our more negative interactions, highlight areas we need to work on, and enable forward planning, personal growth, and professional development. In the course of your medical career, you will come up against challenges and situations which you may be powerless to mend, but in which the most powerful interactions you can have are the ones in which you show compassion, understanding, and –most importantly – your own humanity. We live in a science-dominated world, and it is precisely because science is so powerful that we need the humanities. The sciences present us with facts. They provide certainty. The humanities encapsulate the power of ideas, helping us understand the ever-changing world around us, and our roles within it. They provide us with uncertainty, doubt, and inquisition – which are especially important when it comes to thinking about what, and who, we are. While the sciences thrive on facts, the humanities thrive on abstract ideas, and lateral thinking. As stated earlier, medicine can do amazing things – from face transplants to cancer treatments – and it can sometimes feel like medicine can do anything. But medicine can’t –and shouldn’t – do everything. Every individual under your care should be treated as just that – an individual. Diagnosis and prescription cannot be viewed as separate to a more holistic view of the patient as a person. The message is this: find an expression of the human which works for you – an artistic medium you enjoy, or an interest to be explored – and immerse yourself in it. Watch films, listen to podcasts, learn an instrument, enjoy poetry and literature, or write some you would like to read. Go to galleries, explore museums, learn a new language – travel, and experience new cultures. Or, if you can’t afford to travel – read. Read widely. Books can take us into the farthest corners of the world. Take all the information you are given, reflect upon it, incorporate it into your psyche – and you will come out a more rounded individual, and a more developed practitioner.

Appendix Structured Reflective Templates

Template 1 – Rolfe et al.’s Three-Stage Model of Reflective Practice (2001) What? What situation/scenario has taken place? Describe the situation/scenario, as well as your thoughts and feelings as you are faced with it.

So what? What did you do? What have you learned from this situation/scenario? What did you do to successfully navigate this situation/ scenario?

What next? What has this situation/scenario taught you? What actions did you take which you will utilise again in future? What mistakes were made, and how can you learn from them?



204   Appendix

Template 2 – Kolb’s Reflective Model of Experiential Learning (1984) What happened? Describe the interaction. Have you experienced this before? If so, what happened the last time you experienced this? What was the outcome for the patient/person you were speaking with, and how did your actions/interaction affect this outcome?

How do you feel about what happened? What do you think went well and, conversely, what do you think went badly? How did you feel about the overall outcome? Were you pleased, disappointed, proud, frustrated (etc.)?

Why did you feel this way? What did you learn? What elements of this interaction led to you feeling this way? Are they pleasant emotions, or more negative ones? What have you learned from this scenario? What have you learned about yourself and your clinical practice?

What will you do next time? What has this interaction taught you? Has previous experience played a role in the outcome of the interaction? What strengths/weaknesses in your communication have you identified? What areas for improvement have you found? How do you feel about this? When presented with a similar situation – what will you do next time?

Appendix   

205

Template 3 – Gibbs’ Reflective Cycle (1988) You should be as detailed as possible when completing this reflection. Utilise the example on page [page number needed] for an example/guidance. Your Perspective 1. What happened?

2. What feelings were experienced?

3. What was good/bad about this interaction?

4. What actually happened?

5. What does this mean? What did you learn?

6. What specific actions will you take in the future?

Their Perspective

Index

1832 Anatomy Act, 30 A Abstract thinking, xi Acquired immunodeficiency syndrome (AIDS) art of, 72, 73 drama, 78–79 John Corigliano’s Symphony No. 1 for Orchestra (1988), 76–78 NAMES Project AIDS Memorial Quilt, 74–76 public information campaigns, 72 and public response, 73 Rent, 79–81 UNAIDS report, 73 Active listening, 9, 10 AIDS, see Acquired immunodeficiency syndrome The Angel of the Odd, 41 Annals of Family Medicine, 103 Anti-vaccination movement, 109 Art creation, 33 Audiobooks, 36 Auschwitz–Birkenau Memorial and Museum, 34 B Being Freddie: My Story So Far, 114 The Bluetones, 47, 50 Brain lateralisation, 31 C Canadian Journal of Science, Mathematics and Technology Education, 33 Career reflection, 185 

Cauda equina syndrome, 151–152, 177, 179 Chesters, Eds, 46–50 Children in media, 115–119 Coeliac disease, 139–141 Cognitive empathy, 34 Communication iceberg, 1, 2, 202 Communication models combination approach, 18–19 interactional communication, 16–17 linear communication, 14–15 transactional communication, 17–18 Compassion, 100 Confirmation bias, 108 Consequentialism, 94 Contextual learning theory, 154 Continuity of care, 63 Corpus callosum, 31 Correlation vs. causation, 108–110 Covid-19 vaccination, 54, 110 Cure-all wonder drugs, 60 D Dallas Buyers Club, 81–82 Danny, Champion of the World, 117 Davies, Sarah, 43, 44 Deontology, 94 Department for Business, Energy, and Industrial Strategy (BEIS), 2 Development of empathy, 30 Digital communication, 24–26 Digital Outpatient Care (DOC), 24, 25 Displaced aggression, 173 The Diving Bell and the Butterfly, 188 Docsplaining, xii

Index   

Do not attempt cardiopulmonary resuscitation (DNACPR), 94, 169–172 Drama, 78–79 E Eating disorders, negative stereotypical beliefs, 113, 114 Ebbinghaus’s study, 21 Effective communication, xii, 44, 98 Egyptian art, 37 Emotions, 12, 14, 19, 20, 34, 38, 47, 48, 52, 59, 75–82, 99, 112, 157, 183, 185 anger, 1, 2 emotional implications of language, 93 minimisation of emotion, 165 negative emotions, 10, 186 positive emotions, 186 universal human emotions, 35 unpleasant emotions, 62 Empathy, 5, 11–14, 21, 30, 34, 35, 48, 50, 57, 60, 72, 73, 75, 77–80, 82, 98, 100, 106, 157, 162, 182 The Essential Medical Secretary: Foundations for Good Practice, 24 Experiential learning, 193–195 F Fake news conspiracy beliefs, 111 correlation vs. causation, 108–110 Covid-19 conspiracy belief, 111 measles, mumps, and rubella (MMR) vaccination, 110 misattributed correlation, 110 newspaper editors, 106 Parachute Use to Prevent Death and Major Trauma When Jumping from Aircraft: Randomized Controlled Trial, 107 spread of misinformation, 105 vaccine hesitancy, 109–110 False Belief experiment, 44 Fertility issues, 118 Fisher’s theory, 57 Fletcher, Joann, 37 Fly Away Home, 184 Franken-mouse, 36 Frankenstein: Or the Modern Prometheus (Frankenstein), 36 Frankenstein’s Monster, 61–63 Freddie Flintoff: Living With Bulimia, 115 G Gibbs’ reflective cycle, 196–199, 205 Glasser’s choice theory, 6–8, 126 Guardian, The, 114, 124

207

H The Handmaid’s Tale, 117 Hieroglyphs, 38 Holism, 47, 50 Human brain, 31–32 Humanities, definition, 29 Human Medicines Regulations, 103 I Imaginative empathy, 13 Imposter syndrome, x Information communication to patients active listening, 158 basic narrative, 157 imaginative empathy, 157 informed consent, 159 mirrored empathy, 157 practical approach, 157 verbal aggression, 157 Information literacy, 120 Interactional communication, 16–17 International manhunt, 92 J Jade Goody Effect, 60 John Corigliano’s Symphony No. 1 for Orchestra (1988), 76–78 K Keats, John, 51 Kielty, Gerry, 52 Kolb’s reflective model, 193–195, 204 L Lamia, 51 Linear communication, 14–15 London typhoid, 65 Loneliness, 5 M Martin’s Act (1822), 66 Measles, mumps, and rubella (MMR) vaccination, 110 Media, children, 115–119 Medical ethics beneficence, 88 biographical/true-life works, 93 consequentialism, 94 critical thinking, 120 in dementia care, 94 deontology, 94 emotional implications of language, 93 ethical standards, 91 ethics of persuasion, 103–105 fake news, 105–112 information literacy, 120 justice, 88

208   Index

moral obligations, 91 quality vs. quantity, 121 respect for autonomy, 88 risk mitigation, 123, 124 tabloid newspapers, 113–115 telephone game, 112 virtue ethics in dementia treatments, 96–97 factsheet, 98 obesity crisis, 99–100 placebo medication prescription, 94, 95 Mental health, 53 inpatient care, 91 Method acting process, 13 Mirrored empathy, 13 Mitochondrial DNA depletion syndrome (MDDS), 119–124 Modes of communication digital communication, 24–26 grammar and punctuation, 23–24 spoken word, 19–20 telephone communication, 20–21 written word, 21–22 Mummifying Alan: Egypt’s Last Secret, 38 Music and medicine, 46–50, 76, 77 My Body Back Project, 104 My Mad Fat Diary, 99, 100 N NAMES Project AIDS Memorial Quilt, 74–76 Narrative communication adopting methods, 58 AIDS crisis (see Acquired immunodeficiency syndrome) charity promotion, 60 denial of treatment, 70 health narratives, 59 illness denial, 69, 70 level of health literacy, 69 Mary Mallon case, 64–72 narrative competence, 58 Narrative Learning Theory, 59 narrative of Frankenstein, 61–63 ‘passive patient’ model, 58 patient records, 58 respect for autonomy, 69, 71 right to confidentiality, 68–69, 71 stories, 57, 59, 61 theatre, 80 Narrative Learning Theory, 59 Natasha’s Law, 142 National Illness Service, 58 Naturalistic drama, 26 Need for Uniqueness, 62 Negative stereotypes, 34–35

O Obesity crisis art and humanities, 99, 101 compassion, 100 empathy, 100 health risks, 99 NHS apps, 101 physical activities avoidance, 100 smoking cessation, 101 sympathy, 100 Oral contraceptives prescription, medical ethics, 89 P Palliative care, 63 Palliative chemotherapy, 121 Parachute Use to Prevent Death and Major Trauma When Jumping from Aircraft: Randomized Controlled Trial, 107 Patient-centred care, 9, 49–50 Pectoralis major muscle, x–xi Personalised medicine, 154, 155 Personal narrative, 106 Persuasive language, 166 Pneumonia anticipatory care planning, 169, 170, 172 DNACPR documentation, 169–172 end-of-life care planning, 170 informed decisions, 170 Poe, Edgar Allan, 39–40, 43 Poetry, 182–183 Poor communication, 2, 123, 200 Practitioner–patient relationship, 4 Professional distancing coping mechanism, 10 definition of, 11 empathic action, 13 imaginative empathy, 13 method acting process, 13 mirrored empathy, 13 scale of distance, 12 self-empathy, 13 Prostate examination, 105 Proton beam therapy, 92 Psilocybin therapy, medical ethics, 90 Psychiatric care, 160 Psychiatric medication, 105 Psychological movement, 35 Psychology/talking therapy, 105 Public Attitudes to Science, 2, 53 Putting Life on Hold: Lived Experiences of People with Obesity, 100 Q Quilts, 74–76

Index   

R Rapport establishment, 127, 137, 146 active listening, 9, 10 barriers to building rapport, 8–10 body language, 8 Glasser’s choice theory, 6–8 psychosocial problems, 8 Reagan administration, 72 Recorded attrition rates (2018), 49 Reflection, 185 arts and humanities, 185 career reflection, 185 Gibbs’ reflective cycle, 196–199, 205 Kolb’s reflective model, 193–195, 204 negative and positive emotions, 186 reasoning, 183, 184 reconstructing, 184 relating, 183, 184 reporting, 183, 184 responding, 183, 184 Rolfe’s model, 190–192, 203 self-reflection, 181, 185 Rent, 79–81 Rolfe’s reflective model, 190–192, 203 S Salmonella typhi, 64 Science-based curriculum, xii Scientific anxiety, 37 Scientific Communication Skills, xi Scientific education, 4 Self-empathy, 13 Self-reflection, 181, 185 The Silence of the Lambs, 39 Skinner’s concept of Radical Behaviourism, 4 Snow, C.P., 32–33 Social history, 30 Social interaction, 5, 201 Social isolation, 92–93 Soho, 47 Songs, 78 Speech and Language Therapy (SALT), 97 Split-brain syndrome, 31, 32 Spoken word, 19–20 Sympathy, 19, 66, 78, 82, 100, 120

T Tabloid newspapers, 113–115 Tales From a Midwife, 117 Talking about Oracy, 43 Telephone communication, 20–21 Telephone game, 112 Theory of Mind, 39–46, 157, 177 False Belief experiment, 44 God Complex, 46 language acquisition, 46 Transactional communication, 17–18 Trust, 4, 9, 46, 61, 106, 111, 136, 138, 142, 146 Typhoid fever asymptomatic carriers, 67 diagnosis of, 65 disease transmission, 67 London typhoid, 65 mortality rates, 64 Salmonella typhi, 64 symptoms, 64 vaccine, 64 water-borne transmission, 64 U Universal human emotions, 35 V Vaccine hesitancy, 109 Video Call Etiquette, 26 Video consultation, 25 Visual mnemonics, x W West, A.J., 35 Wheel of empathy, 13 Wilson, Sarah, 34 Women’s Suffrage Movement (1840– 1920), 66 Written word, 21–22 Y The Yellow Wallpaper, 92

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