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New Paradigms In Healthcare
Alessandro Pingitore Alfonso Maurizio Iacono Editors
The Patient as a Person An Integrated and Systemic Approach to Patient and Disease
New Paradigms in Healthcare Series Editors Maria Giulia Marini, Fondazione ISTUD Baveno, Italy Jonathan McFarland, Faculty of Medicine Autonomous University of Madrid Madrid, Spain Editorial Board June Boyce-Tillman, University of Winchester North-West University, South Africa and Winchester, UK Christian Delorenzo, Centre Hospitalier Intercommunal de Créteil Université Paris-Est Créteil and Créteil, France Carol-Ann Farkas, MCPHS University School of Arts and Sciences Boston, USA Marco Frey, Scuola Superiore Sant'Anna Pisa, Italy Angelika Messner, Christian-Albrechts University China Centre Kiel, Germany Federica Vagnarelli, Danat Clinic Danat Al Emarat Women's and Children's H Abu Dhabi, United Arab Emirates Ourania Varsou, University of Glasgow College of Medical, Veterinary and Life Glasgow, UK Neil Vickers, King’s College Department of English Literature London, UK
In the first two decades of this new millennium, the self-sufficiency of Evidence- Based Medicine (EBM) have begun to be questioned. The narrative version gradually assumed increasing importance as the need emerged to shift to more biologically, psychologically, socially, and existentially focused models. The terrible experience of the COVID pandemic truly revealed that EBM alone, while being a wonderful scientific philosophy and containing the physician's paternalistic approach, has its limitations: it often ignores both the patient's and physician's perspectives as persons, as human beings; it pays relentless attention to biological markers and not to the more personal, psychological, social, and anthropological ones, removing the emotions, thoughts, and desires of life, focusing on just the “measurable quality" of it. Health Humanities, Medical Humanities and Narrative Medicine are arts intertwined with sciences that allow to broaden the mindset and approach of healthcare professionals. helping them to produce better care and more well-being. Aim of this series is to collect “person-centered” contributions, as only a multidisciplinary and collaborative team can meet the challenge of combining the multiple aspects of human health, as well as the health of our planet, and of all the creatures that live on it, in a common effort to stop or reverse the enormous damage committed by humans during our anthropocentric era: a new paradigm of healthcare, education and learning to create a sustainable health system.
Alessandro Pingitore • Alfonso Maurizio Iacono Editors
The Patient as a Person An Integrated and Systemic Approach to Patient and Disease
Editors Alessandro Pingitore Clinical Physiology Institute CNR Pisa, Italy
Alfonso Maurizio Iacono Civilisation and Forms of Knowledge Department Universita di Pisa Pisa, Italy
ISSN 2731-3247 ISSN 2731-3255 (electronic) New Paradigms in Healthcare ISBN 978-3-031-23851-2 ISBN 978-3-031-23852-9 (eBook) https://doi.org/10.1007/978-3-031-23852-9 © The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland
Preface
In the current era of Medicine, the scientific approach—that is evidence-based medicine—and technical systems—that is diagnostic imaging, informatics supports, bio-engineering, robotics—dominate everyday clinical practice, according to an approach centred on the disease and not on the patient. Definitely, they have improved clinical management of diseases, from early diagnosis to specific treatment, whether pharmacological or surgical, and so it is unreasonable to think of medicine without them. The question is whether it is conceivable to go beyond a scientific approach, based on large numbers, in which the patient, as a single unit, plays a central role in the medical pathway, while also taking his or her subjectivity into account also. Thus, the strength of the new medicine should be to adapt scientific knowledges to a clinical case. There are several points highlighting this issue: (1) the search for a systemic approach to illness and disease prevention in which, for example, psychological and environmental aspects cannot be disregarded; (2) the increasingly frequent demand for complementary approaches that flank state-of- the-art medical and surgical treatment of diseases with a view to taking care of the person as well as treating the disease; (3) the personalization of medicine that promotes a patient-centred approach, according to P4 medicine, that is predictive, preventive, personalized and participative; (4) the anthropocentrism proposed by new medical approaches, such as the Humanistic Medicine, Systems Medicine and the Biopsychological model, that promote an integrative, holistic and personalized approach, highlighting that biological, psychological and social factors may contribute to the occurrence and progression of diseases; (5) a new interpretation of the relationship between doctor and patient, with a more active and direct involvement of patients in the diagnostic and therapeutic pathways, which should lead to a greater awareness of the disease on the part of patients; dialogue can be based on this new relation with narrative medicine that can potentially give a chance; (6) the complexity of the human being, which is a non-linear, dynamic and interwoven network of organs and systems working to maintain physiological homeostasis, and which often determines an individual and unforeseen physiological and pathophysiological response, therefore, thus requiring a personalized approach.
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The aim of this book is therefore to look at these new aspects of medicine from a person-centred perspective that goes beyond disease-centred and the patient- centred medicine, with a focus on the subjective aspects of scientific knowledge, the relationship between doctor and patient and the opportunity to care for the patient as a person, as well as to treat the disease. The connections between philosophy and medicine, which could actually be considered as two disciplines running on two parallel tracks without any possible point of conjunction, is quite easy to glimpse if we consider that both disciplines have the human being as their sole object of study: this favours looking at patients in their complexity and in undefined facets. Leafing through the pages of this book one will come across different writing modes and languages, from philosophical, medical and biological, to physical and engineering, as well as artistic and architectural culture. We believe that this blend of languages and topics is the true richness of this book. Pisa, Italy Pisa, Italy
Alessandro Pingitore Alfonso Maurizio Iacono
Contents
Part I Between the Doctor and the Patient 1
Between the Doctor and the Patient: History of the Relationship������ 3 Assuero Giorgetti
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The Relationship Between the Doctor and the Patient: The Ancient Conceptions of Philosophy as Medicine������������������������������������������������ 15 Luca Mori
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Between the Doctor and the Patient: Origins of an Intermediate World�������������������������������������������������������������������������������������������������������� 25 Alfonso Maurizio Iacono
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A Systemic Approach to Health and Disease: The Interaction of Individuals, Medicines, Cultures and Environments ���������������������� 39 Giampietro Gobo, Enrico Campo, and Emanuela Portalupi
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The Ward as a Scene�������������������������������������������������������������������������������� 55 Alfonso Maurizio Iacono and Alessandro Pingitore
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Between the Doctor and the Patient: The Role of the Unconscious in the Relationship ���������������������������������������������������������������������������������� 63 Graziella Orrù, Ciro Conversano, and Angelo Gemignani
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The Medical Doing on the Person ���������������������������������������������������������� 85 Ilaria Billeri, Silvia Dadà, and Francesco Giunta
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Consent and Trust in the Doctor Patient Relationship������������������������ 95 Philipp Bonhoeffer, Federico Festa, Lamia Ait Ali, and Pierluigi Festa
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Data and Precision Medicine������������������������������������������������������������ 101 Big Paolo Piaggi
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10 Rehabilitation After a Disease: What Is “Normality” After an Invalidating Disease? ������������������������������������������������������������������������������ 109 Sergio Maria Giovanni Vinciguerra and Valerio Sarmati Part II The Patient as a Person and the Disease 11 Toward Patient Care: Integrative and Complementary Approaches ���������������������������������������������������������������������������������������������� 119 Francesca Mastorci 12 Human Complexity: A Symphony of Vital Rhythms���������������������������� 131 Paolo Grigolini 13 Spirituality in Medicine: A New Dimension in the Light of a Millennial Tradition�������������������������������������������������������������������������� 153 Bruno Neri 14 The Body of Descartes and Humanism in Medicine���������������������������� 171 Alessandro Pingitore and Alfonso Maurizio Iacono 15 The History of Narrative Medicine: A Way to Know the Patient Dimension Between Apollonian and Dionysian������������������������������������ 181 Maria Giulia Marini 16 To Care for a Patient as a Person: Emotional Architecture of the Environment �������������������������������������������������������������������������������������������� 193 Stefano Capolongo and Marco Gola 17 Beauty Saves. Culture Cures������������������������������������������������������������������ 203 Maurizio Vanni 18 An Integrated and Systemic Approach to the Patient: Beyond Evidence Based Medicine������������������������������������������������������������������������ 221 Giorgio Iervasi 19 Medicine: The Science In-Between�������������������������������������������������������� 235 Alfonso Maurizio Iacono and Alessandro Pingitore 20 A Dialogue Between a Philosopher and a Doctor �������������������������������� 241 Alessandro Pingitore and Alfonso Maurizio Iacono
Part I
Between the Doctor and the Patient
Chapter 1
Between the Doctor and the Patient: History of the Relationship Assuero Giorgetti
Introduction Medicine is a fairly new branch of human knowledge and we could speculate endlessly on where the “medical art” ends and “science” begins. On the contrary, disease is as old as living matter and so is the act of healing. The act of healing has two leading roles: the person who suffers and the one who cures, both closely linked by a dynamic relationship. In medicine, the term “relationship” usually refers to “things”: anatomical structures, germs, lesions (related to a disease), but the term has been broadened to include the concept of “function” or “dysfunction”, as it occurs in physiology and pathology. Therefore, in the context of the doctor-patient binomial, the word “relationship” takes on a new meaning identifying the way in which the two protagonists feel and behave towards each other. The doctor-patient relationship in a historical prospective depends on two important variables: the medical situation and the social scene. The “medical situation” includes not only the doctor’s technical skills, but the patient’s and doctor’s ability to self-reflect and communicate. The “social scene” concerns the cultural, scientific, social and political climate at the time in which the relationship takes place. Since these variables are continuously changing over time, the doctor-patient relationship has undergone multiple transitions over the ages.
A. Giorgetti (*) Fondazione CNR/Regione Toscana “Gabriele Monasterio”, Pisa, Italy e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Pingitore, A. M. Iacono (eds.), The Patient as a Person, New Paradigms in Healthcare, https://doi.org/10.1007/978-3-031-23852-9_1
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Prehistoric Times and Early Medicine The absence of written records from prehistoric times prevents assertions of certainty about early medicine. The Palaeolithic Era, or Old Stone Age, characterized by important steps in cultural evolution, coincides with the geological era known as the Pleistocene or Great Ice Age, which ended about 10,000 years ago with the last retreat of the glaciers. Early humans were hunter-gatherers and therefore Omnivores and as such they learned to make tools, build shelters, carry and share food, and create human social structures, living in low-density groups. Although Palaeolithic technology was poor and limited to the manufacture of crude stone tools, prehistoric man showed high capacity for conceptual abstraction as demonstrated by the cave paintings found in many European countries. The Neolithic or New Stone Age modified the lifestyle of ancient humans profoundly by changing the methods of supplying food through farming and animal husbandry. This revolutionary chronological step improved the general quality of life, facilitating the demographic growth and changing the social structure of the primitive population. As a consequence, it is reasonably conceivable that the spectrum of diseases affecting the primitive humans progressively changed with the reduction of some aetiologies (i.e. those linked to malnutrition) while increasing the diffusion of some others (i.e. those conveyed by intermediate host). The study of ancient people and their illnesses is known as Paleopathology. Paleopathologists use a combination of primary and secondary evidence in order to speculate about prehistoric diseases. Primary evidence includes bodies, bones, teeth, and remains of bodies found at sites of accidental or intentional human burials. Secondary sources include the art, artefacts, and burial goods of preliterate peoples. Injuries, bone fractures and infections were surely the most frequent diseases that affected the primitive man. Although our technological evolution has guaranteed new tools for medical investigation, the results of paleopathology remain fragmented, especially in the epidemiological field. However, a fair number of findings suggest that prehistoric medicine included “surgical treatments”, such as skull trepanation and another operation that left its mark on the skull, called “sincipital mutilation”. Such cases lead to the question: at what stage did human beings begin to administer care that would be recognized as a form of medicine or surgery? And who administered the cure? Anthropologists have studied tribal societies that still exist in very remote parts of Africa, New Guinea, Australia and in the Amazonian forest with the aim to shed light on how the earliest people might have lived [1]. Medicine in these primitive societies appears as a combination of religious beliefs and practical remedies. The act of healing is generally administered by a Shaman or a Witch doctor, the person within the community who is believed to be empowered by the Gods. Although tribal rituals, often cruel in their performance, may be the most dramatic aspect of primitive medicine, with an intrinsic psychosomatic effect, the
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healer also used herbs to cure mysterious diseases. The use of plant compounds as medicine is widespread in animals, insects, and even birds and has been closely studied, in particular in non-human primate species. Probably by copying animal behaviour, the primitive medicine man developed a vast knowledge of medicinal, poisonous, and psychotropic plants as a facilitator agent for the magic ritual or the healing process [2]. Anthropologists have observed that primitive people often carried amulets as a strategy of protection against diseases, a sort of ancient disease prevention. Ritualistic mutilations, such as circumcision and scarification, were performed for similar purposes or used as the entry point for snake venom or smallpox varicella in a very early method of vaccination. Drinking the blood of warriors was also thought to give strength for healing. These observations can be reasonably deduced from the prehistoric times, confirming that in primitive medicine the supernatural was involved in all aspects of disease and healing. In this context, the belief in magic is not a trivial concept. Magic provides answers to questions that cannot be answered otherwise and it is closely related to religion. It is conceivable that the history of early doctor-patient relationship is permeated with magic and sorcery, religion and prayers: illness calls for a consultation with the “healer” who has the power to control supernatural agents of the disease by removing evil spirits. Therefore, the doctor-healer is himself endowed with supernatural powers, holding a prominent place in the community, looked upon with respect and fear, and is also consulted for non-medical matters. This scenario suggests a relationship based on the binomial “activity-passivity”, as supposed by Szasz and Hollender [3] in other historical periods. From a psychological point of view this is not a relationship because it is based on the prominent action of one person (the healer) on another (the patient) which is considered unable to provide any active contribution. In other words, the healer manipulates the events on the behalf of the patient. The activity-passivity model is not exclusive of past eras: treatment of emergencies takes place every day without the patient’s contribution. Therefore, primitive medicine should not be dismissed as mere superstition: it has much in common with the folklore that persist and even flourish alongside modern medicine.
Mesopotamia and Egypt Mesopotamia, the land between the Tigris and Euphrates Rivers, was the scene of the growth and decay of many civilizations, including those known as Sumerian, Chaldean, Assyrian, and Babylonian. These populations are particularly interesting because they provided us with some of the oldest written information on medicine and medical care. Among the more than 30,000 surviving clay tablets written in cuneiform, about a 1000 are dedicated to medicine. In ancient Mesopotamia, the cause of an illness was often attributed to supernatural causes such as a demonic attack or possession [4]. Priests used healing rituals with chants to cure the disease.
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Archaeological excavations in the cities of Fara and Ebla have brought to light cuneiform manuscripts dating back to the third millennium B.C., which are the first documentation of healing rituals with this type of chanting. The names of the deities that were invoked in the narrative of the ritual change depending on whether they are from the Sumerian period or the Babylonian period, but the story and the protagonists remain the same. The ritual is between the possessed person and the exorcist priest who plays the part of God. The composition of the chant is complex and structured in six components that can be combined in three main parts: (1) the description of the health problem (the possessed person illustrates the demoniac attack or the misfortune; the exorcist becomes aware of the problem); (2) the dialogue with the God of wisdom (the exorcist talks to the God of wisdom, reports the problem and asks for advice); (3) ritual solution (the God of wisdom provides the minor deity of exorcism with a solution and delivers the instructions for the ritual). The healing ritual required special expertise by the exorcist priest, and it was almost the same for about 3000 years, a fact that is an intrinsic proof of its perceived efficacy. Therefore, the patient-doctor relationship can be divided in four steps: (1) feeling sick; (2) patient seeks relief; (3) patient meets the therapist; (4) patient receives the therapy. The exorcists were not herbs and potions specialists and the therapeutic act probably relied on the placebo effect. As with other ancient cultures, some of the knowledge of ancient Egypt is based on information noted by writers from a different age while others can be obtained by medical papyri such as those of Edwin Smith (1600 B.C.) and Ebers (1550 B.C.). The cause of the disease was usually understood as the consequence of a sin and, when that was not the case, the patient was thought to be possessed and the evil needed to be expelled through prayers, rituals and magical potions. Egyptians however, also had advanced knowledge of anatomy and physiology (probably borrowed from the mummification art) [5]. The clinical cases reported in the papyri reveal a relatively high level of medical science, including surgery and dentistry, and show that empirical (experience- based) treatments were used in addition to magic. Within the physician class, there were several levels of professionals. The “swnw”, doctor of the people, was the lowest one, usually self-taught and deputy to treating poor people. The “Wabw”, the “pure”, was a high social status physician who dealt with the more privileged in society, administering medicine but using religious rituals too. Ebers papyrus provides the medical approach to the patient in four steps: preliminary diagnosis (to decide whether to treat the patient on the basis of a presumed prognosis: it was important to maintain a good reputation); examination of the patient; final diagnosis; plan for treatment (including medicine and/or magic formulas). Institutions, called “Houses of Life” (Per Ankh) are known to have been established in ancient Egypt since the first Dynasty and may have had medical functions for educating future doctors, even the women were allowed to participate. It therefore seems likely that in ancient Mesopotamia end Egypt the activity-passivity type doctor- patient relationship existed and that this relationship remained unaltered. Neither the social circumstances nor the technical advances with respect to prehistoric times were such as to require a change within this relationship.
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Greeks and Romans Hippocrates of Cos (460–377 B.C.), the “Father of Medicine” was born in Greece. The Corpus Hippocratum, is the term used to describe 50–70 books that for centuries were all attributed to Hippocrates, even though these books involved various writing styles and is considered to be work of more than one individual. However, it represents a compendium of medical knowledge of the period. Hippocratic medicine was based on the belief that diseases came from natural causes (often imbalances) and not as a result of a god’s punishment. Moreover, a particular emphasis was given to the patient and her/his symptoms. Hippocrates is also widely known for the Hippocratic Oath, a code of ethics for doctors and a sort of assurance of the patient’s rights [6]. The Hippocratic Oath describes the attitude that the doctor must have towards the patient: “The regimen I adopt shall be for the benefit of my patients according to my ability and judgment, and not for their hurt or for wrong…..Whatsoever things I see or hear concerning the life of men, in my attendance on the sick or even apart there from, which ought not be noised abroad, I will keep silence thereon, counting such things to be as sacred secrets.” The oath breaks with the past by enunciating ethical values that bring patient’s well-being, not just illness, to the center of the relationship. Over time Rationalists (or Theorists) is the term that became commonly used to indicate the followers of Hippocrates. They believed in a patient-centric form of medicine based on a scientific-rational approach. This dogmatic medicine was based on the Stoic theory of signs and was divided into three parts: the observable circumstances of health and disease, the unobservable causes of these circumstances, and the strategies that were used to cure or prevent a disease. In approximately the third century B.C., the Empiricists evolved and they partially rejected Rationalists ideas [7]. Empiric medicine was strictly based on observation and the Empiricists contributed to the development of the medical specialties of symptomatology, pharmacology, and surgery. At a later stage, Themison of Laodicea founded the Methodical School (about 50 B.C.) introducing a new medicine partially based on Democritus’s atom theory. The most famous Methodist was Soranus, the biographer of Hippocrates, who contributed in expanding knowledges in gynaecology and obstetrics. Therefore, Greeks developed a dynamic system of medicine based on an empirical-rational approach and on naturalistic observation, enhanced by clinical practice and learn by trial and error experience, rejecting magical and religious justifications of human bodily dysfunction. It is possible that the evolution towards political forms of social democracy has, to some extent, influenced interpersonal relationships. As a consequence, the doctor-patient relationship changed, assuming some connotations of “guidance-cooperation” and in some cases of mutual participation. Medicine came to Rome with the conquest of Greece. In Rome, being a doctor was considered misbecoming, which only a foreigner could do. The most characteristic element of Roman health was the concept of hygiene. The Romans washed
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themselves a lot, an example is the use and the number of thermal baths existing at that time. The most notorius Roman physician was certainly Claudius Galen (129–199), famous for his pharmaceutical cures, the galenicals, some of which were prescribed in Europe as late as the nineteenth century. Although he lived 600 years after Hippocrates, Galen supported Hippocratic ideals but he broke with Greek tradition by disdaining surgery and he practiced dissection that made him a remarkable anatomist [8]. He tried to heal the gap between “theoretical” medicine and “practical” medicine. On the one hand, the great Pergamon doctor argued the importance of direct observations through anatomical experiments; on the other hand, he expressed the need for an improvement in the ways in which the doctor relates to the patient. It is not enough for the doctor to know, he must know what to do and how to be. The doctor must possess certain ontological qualities (acuity, sensitivity, balance), for this reason Galen said: “Quod optimus medicus sit quoque philosophus” (the best doctor is also a philosopher). The force of Galen’s ideas was so strong that his thinking dominated medicine for about 1500 years, and medical progress was paralyzed for more than a century.
From Medieval Europe to 1800 With the fall of the Roman empire, religious and supernatural beliefs were restored and they became dominant in every discipline: from art to philosophy and to medicine itself. Once Christianity became prevalent in healthcare, a change in policy was observed. The Christians placed an emphasis on God’s role in the curing of patients, and thus their healthcare systems reflected that, ultimately, God cures the sick. This resulted in a decline in the importance of technique; however, an emphasis on the comfort of patients resulted in a doctor-patient relationship that prioritized the patient more than in antiquity. The practice of medicine became assistance: who provides care, who is not necessarily the doctor, takes care of the one who asks for help following the principle of caritas, making no distinction between the sick, the poor or the travelers. In the Late Middle Ages, medical education was institutionalized with the birth of universities. The doctor, educated and belonging to a small social elite, ended up losing contact with the patient. Furthermore, this distancing from the patient is favored by the fact that the Middle Ages itself is a period of great distrust due to the spread of epidemics, such as the plague. Therefore, Medieval Europe witnessed the regression of the doctor-patient relationship: the doctor, following the magic-religious beliefs epitomized in the Old and New Testaments, was in a high-ranking position in society while his patients were regarded as helpless children, therefore restoring the activity-passivity model. This relationship model remains virtually unchanged over the period from 1300 to 1600 [9]. The development of anatomy with Vesalius, physiology with Harvey, and many other medical specialties make medicine a science in all respect. The Hippocratic-Galenic method was never completely abandoned, but it is no longer understood as a microcosm, but as the disease and the organ dysfunction that are
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central in the medical approach to the patient. Between the fifteenth and the seventeenth centuries, the structure of society in Europe and America was developing, and three distinct strata began to emerge: the “upper classes” (aristocrats, rich merchants), the “middle classes” (artisans, officials, and members of various professions), and the “lower classes” (laborers, the poor). Parallel strata could be observed in medical care. Doctors were few in number and their patients were mainly aristocratic while the lower classes continued to go to hospitals for the poor. With the Illuminism and French revolution there was a push to renew the intellectual and moral sensitivity of the time and to reform the traditional political and religious institutions of society, relying fully on the critical and rational abilities of man: as a consequence, empirical science began once again. The symptom was the illness and physicians had to understand the patient’s needs related to the symptom. This approach restored in part the patient’s dignity and, for example, determined the break with the past era preventing the imprisonment of the mentally ill and socially underprivileged. But the scenario was destined to change rapidly in a historical period of great intellectual fervor and thanks to the work of eminent physicians, such as Louis Pasteur (1822–1895) and Heinrich Hermann Robert Koch (1843–1910). Indeed, during the late eighteenth Century a new medicine, based on the microbiological knowledge and increased surgical skills, was developed: the biomedical model of illness suggested that the symptom was no longer the illness but the indicator for the presence of a particular pathology. Therefore, the patient’s body had to be examined to find the signs of the disease and to formulate a diagnosis. This model was even more predominant during the nineteenth century: the advent of instruments (stethoscope, sphygmograph, ophthalmoscope, chemical analysis, X rays, etc.) which allowed to measure physiological functions quantitatively or to represent them graphically, changed the subjective perception that doctors had of the patient’s breathing, blood circulation and body temperature into precise and objective data. In other words, the patient was seen as an individual that could be rationally understood. The disease was scientifically investigated by applying rules that were anatomo-clinical, physiopathological, or etiopathological. The diagnosis tried to be both scientific and individualist at the same time. From a sociological point of view, the Industrial Revolution was probably the most important event of the nineteenth century and brought about a profound and irreversible transformation that started from the productive system involving the economy as a whole and the entire social system, increasing social disparities with impact also on the provision of medical care. There was the “medicine for the rich” (usually provided by the doctor in his private room), “medicine for the middle classes” (patients treated at home), and “medicine for the poor and proletarians” (provided in charitable hospitals). Starting from the second half of the nineteenth century there was a progressive rebellion against this injustice with socio-political and clinical aspects and, probably, the awareness of the injustice suffered contributed to the increase in chronic distress and neurotic forms of illness. But the Industrial Revolution, with its faith in science, also brought a wind of optimism: “what could not be cured today might well be curable tomorrow”. And the figure of the doctor, who owns the anatomical,
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clinical and technological knowledge to formulate the correct diagnosis, became predominant in the doctor-patient relationship: there was a dominant doctor acting in the patient’s interest and a patient who had to accept the submissive condition in order to receive adequate care, a relationship analogous to the parent-child one that can be defined paternalistic.
The Development of a Patient-Centred Medicine In the late nineteenth century, the emergence of psychology as a science progressively brought the patient back to the centre of the relationship or, at least, it looked to renew the doctor’s awareness of the patient as a person and not just an object of study. The psychoanalytical and psychosocial theories proposed by Josef Breuer (1842–1925) and Sigmund Freud (1856–1939) stressed the great importance of listening to the patient and consulting the patient as an active participant, in order to build a truly communicative relationship [10]. This approach can be considered as the first attempt in developing a patient-centred medicine. A further step along this road was made by Michael Balint (1860–1970), physician and psychoanalyst at the same time, who tried to combine these sciences [11]. The creation of “Balint Groups” showed how, through group discussion, a deeper and more humane picture of the patient emerged. He argued that illness was not only a biological phenomenon but also a psychosocial one and emphasised the concept of the “doctor as a drug”. And as a drug, the role of the doctor in the relationship created uncertain aspects, such as the frequency of the visits (“dosages” of the drug) or possible side effects. Moreover, the biomedical model built a story in which both doctor-patient together created trust, confidence and knowledge of each other, a condition which Balint called “mutual investment”. In other words, through the relationship the doctor progressively increased his skills and obtained a better insight of the patient’s needs and the patient progressively became more and more aware of the doctor’s abilities and felt gratified by his intervention, a mutual investment that with time would benefit both parties. In 1956, Szasz and Hollender summarized three modern models of the doctorpatient relationship [3]: (1) the activity-passivity (paternalistic) model, in which there is no true relationship, the doctor is dominant and the situation is like that between a parent and a child. This model entirely fit the situation of emergency when a life-saving intervention is delivered for the benefit of the patient and there is no time to communicate; (2) the guidance-cooperation model, as in the parent- child/adolescent relationship, that can be observed when the clinical situation is less acute and the patient is expected to cooperate for the success of the medical intervention; (3) the mutual participation model, as illustrated by Balint, in which there is shared decision-making process.
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Indeed, Balint’s work has generated a debate that, even today, persists and invokes a patient-centred relationship in the clinical practice. Therefore, the doctor’s task is to understand the patient’s needs, and the signs and symptoms manifested must be interpreted not only in relation to the disease but seen as an expression of the patient’s individuality and his psycho-social conflicts. The therapeutic alliance in the mutual participation model is a concept that was supported by Rogers in 1967 and Roth and Fonagy in 1996 [12, 13] and it implies that both parties must have an unconditional positive approach, aimed at developing a sympathetic relationship in order to ensure adherence to the treatment plans and optimal clinical results. By contrast, if the patient is a person, the doctor is a person too and, at the beginning of the present century, Mead and Bower suggested that many variables can potentially influence the doctor’s propensity to be patient-centred [14]. For example, conditions concerning the patient’s gender or ethnicity, in certain cultural realities it could increase relational barriers; work pressures could reduce the willingness of the doctor to communicate. Despite these possible limitations, the doctor- patient relationship has witnessed over time a shift towards the patient, which someone has termed as “the age of autonomy”. A recent further step is represented by systems medicine. System approaches to biology and medicine are beginning to provide personalized information about both health and disease at molecular, cellular and organ levels. This information provides personalized care based on a person’s biology, permitting to treat the causes rather than the symptoms of the disease. Therefore, a new paradigmatic shift has been proposed as a predictive, preventive, personalized and participatory (P4) medicine [15]. P4 medicine is participative by definition and it is expected to significantly reduce the incidence of the complex chronic diseases that currently account for most of disease-care costs. P4 medicine reflects the important technological progress of the last decades that has considerably influenced the quality of the care. And the parallel diffusion of knowledge linked to the internet network, although not always truthful, has increased the patient’s awareness in the role played in the decision-making process. The development of the concept of the informed consent to treatment can be seen as a legal demonstration of the recognition of the patient’s rights and autonomy over the medical practitioner’s. As a side effect of this mutation in the doctor-patient relationship, a progressive increase in lawsuits for claimed negligence has been observed in the Western world, exacerbating a defensive medicine, in an era dominated by cost containment and social cost-benefit analyses. In other words, in our modern era, the physician plays a complex role as applied scientist and bureaucratic administrator who tries to do the patient’s good [16]. The question appears to be who will have the final authority to make decisions: the doctor, the patient, the doctor and the patient, or will the decisions be reviewed by payers who may approve or disapprove of it?
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Conclusions The doctor-patient relationship has changed over time according to the historical period and cultural, social and economic influences (a timeline summarizing this evolution is showed in Fig. 1.1). In the past, the cultural gap between the doctor and the patient made it impossible to create models of effective cooperation in the medical decision-making process. Therefore, until the end of the 1800s, the figure of the doctor prevailed and a paternalistic approach dominated the relationship: the doctor, according to his position as a scientist, established what is good for the patient’s health. The development of psychology and sociology as sciences has brought the patient back to the center of the relationship: mutual cooperation and shared decision-making have today replaced the activity-passivity model. The patient has gained awareness within the relationship by sharing and approving the decisions. The doctor is the scientist, the technical expert, and not only does the doctor cure the disease but the patient is taken care of too. This scenario is sometimes considered a kind of romantic vision of a medicine that no longer exists and which is today increasingly subject to political and economic conditioning. Therefore, we may wonder if the relationship will survive the attacks of modern times.
Medicine in the primitive societies appears a combination of religious beliefs and practical remedies. The act of healing is administered by a shaman, the medicine man empowered by the gods. The doctor-patient relationship is based on the binomial activitypassivity
Prehistoric times and early medicine
In ancient Mesopotamia end Egypt the cause of the disease was usually understood as the consequence of sin and the patient was considered under a demonic attack. The evil needed to be expelled through prayers, rituals and magic potions. The activity-passivity type doctor-patient remained unaltered.
Mesopotamia and Egypt
Greeks and Romans developed a dynamic system of medicine based on an empiricorational approach and on naturalistic observation, rejecting magical and religious justifications of human bodily dysfunction. As a consequence, the doctor-patient relationship changed, assuming some connotations of guidance-cooperation.
Greeks and Romans
With the fall of the Roman empire, religious and supernatural beliefs were restored with the restoration of the activity-passivity model to. Later, medicine becomes pregressively a science. According to the biomedical model the patient’s body had to be examined to find disease’s sign and to formulate a diagnosis. The figure of the doctor became predominant and the relationship paternalistic.
From Medieval Europe to 1800
Fig. 1.1 Timeline of the doctor-patient relationship through the ages
With the emergence of psychology and its inclusion into medicine, the doctor-patient relationship has over time witnessed a shift towards the patient with the development of a mutual participation model, that finds its sublimation in the P4 medicine model
1900 to today
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References 1. Herndon CN, Uiterloo M, Uremaru A, et al. Disease concepts and treatment by tribal healers of an Amazonian forest culture. J Ethnobiol Ethnomed. 2009;5:27. 2. Hardy K. Paleomedicine and the use of plant secondary compounds in the Paleolithic and Early Neolithic. Evol Anthropol. 2019;28:60–71. https://doi.org/10.1002/evan.21763. 3. Szasz T, Hollender M. A contribution to the philosophy of medicine: the basic model of the doctor-patient relationship. Arch Int Med. 1956;97:585–92. 4. Annus A. The spiritual dimensions of healing rituals in ancient Mesopotamia. J Relig Health. 2020;59(5):2486–503. https://doi.org/10.1007/s10943-019-00964-x. PMID: 31848800 5. el-Assal GS. Ancient Egyptian medicine. Lancet. 1972;2(7771):272–4. 6. Singer C. Hippocrates and the Hippocratic collection. Encyclop Britannica. 2000;11:583. 7. Matthen M. Empiricism and ontology in ancient medicine. Apeiron. 1988;21(2):99–122. 8. Toledo-Pereyra LH. Claudius Galenus of Pergamum: surgeon of gladiators. Father of experimental physiology. J Investig Surg. 2002;15(6):299–301. https://doi. org/10.1080/08941930290086100. 9. Kaba R, Sooriakumaran P. The evolution of the doctor-patient relationship. Int J Surg. 2007;5(1):57–65. 10. Breuer J, Freud S. Studies on Hysteria. Translated from the German and edited by James Strachey, The standard edition of the complete psychological works of Sigmund Freud, vol. II. London: Hogarth Press; 1955. 11. Muench J. Balint work and the creation of medical knowledge. Int J Psychiatry Med. 2018;53(1–2):15–23. 12. Rogers C. On becoming a person: a therapist’s view of psychotherapy. London: Constable; 1967. 13. Roth A, Fonagy P. What works for whom? A critical review of psychotherapy research. London: Guildford; 1996. 14. Mead N, Bower P. Patient-centredness: a conceptual frame-work and review of the empirical literature. Soc Sci Med. 2000;51:1087e110. 15. Flores M, Glusman G, Brogaard K, Price ND, Hood L. P4 medicine: how systems medicine will transform the healthcare sector and society. Per Med. 2013;10(6):565–76. 16. MacIntyre A. In: Cassell EJ, Siegler M, editors. Medicine aimed at the care of persons rather than what…? Changing values in medicine. University Publication of America; 1979.
Chapter 2
The Relationship Between the Doctor and the Patient: The Ancient Conceptions of Philosophy as Medicine Luca Mori
Philosophy as Medicine Some philosophers of the ancient Greek and Roman worlds referred to medicine to define the nature of their exercises for self-care. The historian of ancient philosophy, Pierre Hadot, called them “spiritual exercises” [1, 2], while the French philosopher Michel Foucault used the expression “technologies of the self” [3]. Cicero (106–43 BC) is very clear on this point: in the Tusculanae disputationes he defines philosophy “a medical science for the mind (animi medicina)”, specifying that its task consists in treating wrong habits and beliefs (III, 6, in [4], p. 5). We need it because we are immersed in error from birth, “as if we had drunk in error along with the milk of our wetnurses” (III, 2, p. 4). And there is an aggravating circumstance: “the sicknesses of the mind are both more destructive and more numerous than those of the body” (III, 5, p. 4). What should be the task of philosophy according to Cicero? Philosophy should find a cure for the perturbations of the soul (perturbationes animi) that upset the mind, depriving it of tranquillity and stability (tranquillitas and constantia). There is an individual predisposition (proclivitas) to particular diseases, both in relation to the body and in relation to the mind, and when a passion or mental disturbance is stirred for a long time in the soul of a person, without being subjected to adequate therapy, it evolves into disease and infirmity (morbus, aegrotatio). Another Roman philosopher, Seneca (4 BC–65 AD), states that the diseases (morbi) of the soul are the result of passions that are frequently experienced and neglected: “These, when they occur frequently and do not receive any treatment,
L. Mori (*) Dipartimento di Civiltà e Forme del Sapere, Pisa University, Pisa, Italy e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Pingitore, A. M. Iacono (eds.), The Patient as a Person, New Paradigms in Healthcare, https://doi.org/10.1007/978-3-031-23852-9_2
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cause the infirmity, just as a single cold in the head, if it is not protracted, brings on nothing more than a cough; but if it happens repeatedly for a long time, it brings on the wasting disease” (Letters on Ethics LXXV, 12, in [5], p. 238).1 Moving from the Roman world to Greece, Socrates was the first to raise the issue in finding a systematic method (techne) of caring for the soul (psyché), assuming that the ancient Delphic motto “know thyself” urges one to know one’s psyché ([8], p. 133).2 It is the task of a practical philosophy to determine which method of self- observation and self-transformation lead to the possibility of caring for oneself and becoming better. There is a circular relationship between knowing oneself and making oneself better: “Well then, could we ever know what skill makes us better if we didn’t know what we are?” (Alcibiades I, 128e; [10], p. 587).3 Téchne (method, art, skill, technique) is one of the most commonly-used word in Plato’s dialogues. Around the year in which Plato was born the several waves of a plague that struck Attica (430–426 BC) led to the introduction of the cult of Asclepius in Athens: as the historian of philosophy Giuseppe Cambiano points out, those were also the years to which the methodological writings of the Corpus Hippocraticum date back. The Platonic distinction between empiricism (empeiría) and technique (téchne) may have been inspired by the Hippocratic distinction between inadequate interventions and interventions based on understanding the causes of diseases and their course ([17], pp. 30–31): while the term empeiría designates the combination of dexterity and practical ability resulting from repetition and experience; the second term presupposes the ability to understand the causes of the observed phenomena, in order to proceed methodically in analysing and modifying them, giving reasons for what is observed, what is done and the expected effects. We have seen that Plato refers to the psyché as the privileged field of intervention for the philosophical method for healing human diseases produced by false beliefs. Despite the centrality of the psyché and the underlying dualism of his philosophy, the Platonic perspective is holistic and closely connects psyché and body care. The position of Doctor Zalmoxis, recalled in the dialogue intitled Charmides, has significant implications for all aspects of the self-care: “the soul is the source both of bodily health and bodily disease for the whole man, and these flow from the soul in More in general, “the Hellenistic philosophical schools in Greece and Rome—Epicureans, Skeptics, and Stoics—all conceived of philosophy as a way of addressing the most painful problems of human life. They saw the philosopher as a compassionate physician whose arts could heal many pervasive type of human suffering” ([6], p. 3). Naturally, there are disanalogies between medical practice and physical health on the one hand, and philosophy and psychological health on the other hand: in this regard, see [7]. 2 See [9], p. 112: “According to Socrates, vision (ὄψις) is likely to be the only model (παράδειγμα) capable of explaining the Delphic precept and the way in which we can know ourselves (132d3). Just as the eye needs a mirror to see itself, so too does the soul (ψυχή) require another soul in order to know itself”. 3 On the relationship among self, self-knowledge and psyché in Plato, see [AdditionalCitationIDS=”CR12 CR13 CR14 CR15”11–16]. 1
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the same way that the eyes are affected by the head. So, it is necessary first and foremost to cure the soul if the parts of the head and the rest of the body are to be healthy” (Charmides 156e–157a; in [10], p. 643). How should the soul be cured? With Zalmoxis, Plato exposes the following thesis: “the soul […] is cured by means of certain charms, and these charms consist of beautiful words. It is a result of such words that temperance arises in the soul, and when the soul acquires and possesses temperance, it is easy to provide health both for the head and for the rest of the body”. Plato’s perspective is holistic in another sense as well. In Letter VII (330c–d) we read that a philosopher must act as a good doctor, in order to improve conditions for his “patients”: he must not worry only about the symptoms, focusing exclusively on them, because he has to consider the patient’s lifestyle and therefore the patient as a whole, the patient’s habits and erroneous ideas about the patient’s self and health, the patient’s aspiration to improve the condition and difficulties in maintaining a behaviour consistent with the stated objectives. Here is Plato’s advice to the philosopher-doctor: “When one is advising a sick man who is living in a way injurious to his health, must one not first of all tell him to change his way of life (metabállein ton bíon) and give him further counsel only if he is willing to obey? If he is not, I think any manly and self-respecting physician would break off counseling such a man, whereas anyone who would put up with him is without spirit or skill” ([10], p. 1651).4 Starting from Plato, this essay reflects upon some implications of the medical analogy (philosophy as medical science for the mind), focusing on the methods a philosopher should employ in order to achieve therapeutic goals and the way in which the philosopher-doctor should relate to patients. The underlying hypothesis of the chapter is that just as philosophy drew inspiration from medicine, medicine in turn can draw inspiration from philosophy on these issues.
he Quadripartite Model of Medicine and the Therapeutic T Goals of the Philosopher-Doctor In the Republic, Plato writes that “we should always accustom our souls to turn as quickly as possible to healing the disease and putting the disaster right, replacing lamentation with cure” (604c, [10], p. 1209). The reference to the medical art makes it possible to articulate the logical structure of philosophical therapeutic exercises into four main, distinct and closely related phases: (1) diagnosis, which consists of More generally, “[…] scholars in ancient philosophy have come to realise that a number of ‘philosophers’ too had their own particular reasons for being interested in areas and themes that we commonly associate with medicine and for pursuing these interests in a variety of forms, theoretical as well as practical—and, in so doing, were interacting with medical writers in the setting of their agendas, the formation of their ideas, concepts and methodologies and in their practical activities” ([18], p. 9). See [AdditionalCitationIDS=”CR20 CR21 CR22 CR23 CR24 CR25”19–26]. 4
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recognizing the typical living conditions of a human being and identifying the nature of his/her disease; (2) aetiology, which is the identification of the set of causes of a disease; (3) therapy, which is the treatment and exercises useful for reducing or eliminating the disease; (4) prognosis, which is the judgment on the likely or expected course of the condition of a patient. Seneca’s dialogue De tranquillitate animi embraces clearly the perspective opened by the medical metaphor: it begins with a request for help from his friend Sereno, who declares to be in the delicate situation of not being sick, but not even healthy, prey to an infirmitas of the mind that prevents him from orienting himself decisively to the best behaviour. Sereno fears that this basic disorientation hides a more serious evil than that appearing at first sight and, therefore, he turns to the philosopher asking for a remedium for the swaying instability (fluctuatio) that torments him, causing him a discomfort similar to nausea. Sereno addresses Seneca as if his friend was a doctor: “I ask you, therefore, if you possess any cure by which you can check this fluctuation of mine, to consider me worthy of being indebted to you for tranquillity” (De tranquillitate animi 1; [27], p. 115). Seneca pays close attention to Sereno’s words, and responds to his concerns by offering interpretation keys, advice, metaphors and examples to help him understand what is happening to him. Seneca helps Sereno to understand his particular case on the basis of general principles, but at the same time brings the general principles back to the particular case: in the text it is clear that this approach is possible only by giving centrality to what the patient tells, to his experience and to the emotions accompanying it. As Nussbaum ([6], p. 46) put it, “just as a good doctor heals case by case, so good medical argument responds to the pupil’s concrete situation and needs”. Beyond individual cases and the particular difficulties, they raise, in a general perspective the philosopher’s prognosis concerns the ideal goal achievable by a human being through philosophical exercises correctly understood and practiced. The scene of human action can be described in various ways, and different descriptions implicate different frames of reference for the ethiological analysis of a typical human behaviour. For example, the scene of human action is represented by Plato’s cave, or by the whirling motion of thought, of which Seneca writes in the Letters to Lucilius (XXXVII, 5) and Marcus Aurelius in his Thoughts (XII, 3): with reference to these and other general (sometimes allegorical) descriptions of the human condition, an accurate research on the multiple factors underlying the suffering of the soul (psyché) requires the need to define precisely the origins and dynamics of the motions imparted on the body by psyché, and vice versa. Such research in turn requires understanding the processes linking perceptions, representations, passions, formation of concepts, formulation of judgments and habits: it is on the basis of the analysis of these processes that the philosopher-doctor can explain to patients the principal causes of their passions conceived as affections and perturbationes animi,
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as well as the principal causes of ignorance, unconsciousness, madness (anoia, amathía, aphrosyne), intemperance (akolasía), and incontinence (akrasía).5 Based on observations of human behaviours that imply suffering and permanent dissatisfaction, philosophy has to formulate multiple strategies for healing human diseases produced by false beliefs and self-centredness, and for eradicating or moderating deceiving passions and short-sighted desires. Among the key elements for transforming the most common negative human traits, there are good speeches (lógoi) to keep at hand, a canon or norm of life to follow (kanón, biōtikòs nómos), models of life to refer to as a reference point (Socrates and Diogenes, for example), and so on. These key elements contribute in defining a variety of exercises, which can concern habits, diet, perceptions, the governance of representations, desire and the fundamental impulses of attraction and repulsion, memory, imagination, and the use of language. All the previous points derive their fundamental meaning from the indication of the aim (télos) associated with the philosophical care of the self: with explicit reference to the medical metaphor, the aim is healing (in Greek íasis), or health (ughíeia); conditions for the attainment of this aim are purification (kátharsis), mind reorientation, and—with reference to the metaphor of imprisonment—the dissolution of the “chains” (lysis) that drag the psyché downwards (e.g. the chains of ignorance, self- ignorance, and uncontrolled appetitive desires, which create dependency from the desired objects). More generally, the final télos of the philosophical care of the self in the ancient world is stable happiness, which can be associated with a condition of calm and balance deriving from independence, self-control and continence, withdrawal from exposure to disturbances, temperance, absence of passions, imperturbability, freedom.
reatment Methods and the Relationship Between Doctor T and Patient Philosophical therapy can be metaphorically described through the allegory of Plato’s cave, which is a myth about ignorance and learning, and on how to cross the intermediate world generated by the acquisition of a new way of seeing and living. Plato compares the ordinary condition of human beings immersed in ignorance with that of hypothetical prisoners locked up in a cave: they can merely see the shadows projected on the wall, in front of which they are chained. Since those prisoners cannot turn around and perceive nothing but shadows, for them those shadows constitute the one and only authentic reality. When one of the prisoners were led towards the exit of the cave, once outside he or she could finally see and know the real world; but if the prisoner then returned to the fellow prisoners to tell what was seen, the prisoner run the risk of not being understood, mocked, and put to death. The core of See [28].
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the Platonic philosophy of exercise consists in showing how prisoners could learn to make their condition better by accepting the challenge of changing their points of view (on themselves, on the limits of their condition, and on the reality inside and around them). Cicero defines philosophical reasoning—more specifically, the dialectical method of using reason to examine life—as the “Socratic medicine”: the assumption is that thanks to the exercise of judgement and the careful examination of the concepts we apply to ourselves, we can get to know and make ourselves better, becoming aware of our limits and hence of how to determine the “right thing” to do in every situation. “When a person has conceived a desire for money”, writes Cicero, “and when there has been no immediate application of reason—the Socratic medicine, as it were, which might have cured that desire—then the evil works its way into the veins, and settles in the vital organs, and comes to be a sickness and an infirmity. Once it has become habitual, the sickness cannot be removed, and its name is ‘greed’” ([4], IV, 24, p. 47). In this perspective, the philosopher-doctors have the task of opening the eyes of their patients, making them aware of their condition and of the hidden roots of their diseases. In order to make their patients aware of their health goals and foster their continue self-monitoring, it is essential that philosophers master the art of conversation: they must be able to listen with accuracy, to discover the implicit assumptions that affect understanding, to ask and give reasons for beliefs or actions, starting from the patient’s concrete situation and needs. This conversation can be interpreted as an intermediate world between ignorance and knowledge, awareness and unawareness, suffering and stability of the soul. It represents metaphorically the process of being led out of the cave (that is, a process of education designed to gain knowledge and self-knowledge). From Cicero’s point of view, the diseases of the soul are more numerous and insidious than those of the body, because while the latter have symptoms which are often evident, it is far more difficult to notice cognitive errors, because in the last case the disease weakens the organ of judgement itself. Seneca also warns Lucilius that it is more difficult to be aware of the infirmities that affect the mind: “with these, the worse one is afflicted, the less he is aware of it” (Letters on Ethics LIII, 7, [5], p. 154). Those who are immersed in their defects do not feel them and do not notice them, just as those who are immersed in sleep are not aware of dreaming: “But philosophy is the only thing that will awaken us (Sola autem philosophia excitabit); the only thing that will rouse us from our deep sleep” (LIII, 8, [5], p. 154). The task of the philosopher, therefore, is to teach his/her interlocutor how to improve self-awareness and to see things with other eyes: being stimulated to “engage in a give-and take discussion” ([29], p. 25), the interlocutor of a philosopher is called to a cooperative inquiry, and in taking active part in the research he/ she cease to be viewed primarily as a set of symptoms, insofar as he becomes a set of possibilities of self-regulation and self-transformation. It is not just a question of the patient’s right to be informed about his/her condition and treatment: information makes sense only if it is understood, and
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understanding presupposes a process of co-construction of meaningful links and of learning under pathological conditions. Nussbaum [6] argues that in antiquity two types of philosopher-doctors were distinguished: the “Platonic” doctor, who does not rely on the collaboration of his patients, and the doctor capable of engaging in dialectic, who knows the importance of relying on the insights of his patients. This distinction is too rigid: in general, the philosopher-doctor has the task of activating a cognitive conflict that bridges the new questions to be addressed and the new knowledge acquisitions based on a deep, explorative conversation. Both philosopher-doctors and patients must learn to share their differing perspectives through reasoned conversation, wherein—as an in intermediate world— different points of view and perceptions of reality meet: thanks to the guide of a philosopher, one can begin to explore the intermediate world of the care of the self, which is located between the region of the current state and the space of the probable future condition, the probability of which depends on actions and interactions of many variables. This complex process of self-understanding and self-transformation does not exclude suffering. Epictetus was very clear on this point, comparing the school of a philosopher to a “hospital for souls” (iatreion): “A philosopher’s school, man, is a doctor’s surgery. You shouldn’t leave after having had an enjoyable time, but after having been subjected to pain. For you weren’t in good health when you came in; no, one of you had a dislocated shoulder, another an abscess, another a headache” (Discourses III, 23, 30; see the chapter The Philosopher as Doctor in [30, 31]). Part of the suffering to which Epictetus refers to derives from examining the conduct of habitual life, noting its errors and inconsistencies, and the attempt to adopt counter-habits that involve constant commitment. The main difficulty to which Epictetus draws attention to is precisely that of moulding oneself according to the best judgments, as a statue is shaped by the art of the sculptor. The philosopher-doctor must be frank, taking into account the widespread prejudices about the disease: “The fact is that we have a certain preconception of what it means to be ‘healthy’ too, but aren’t able to apply it properly. That is why one person says, ‘Continue with the diet,’ while another says, ‘Give him some food now,’ or one says, ‘Bleed him,’ while another says, ‘Apply a cupping-glass.’ And what is the reason? Is it anything other than the fact that we’re unable to apply our preconceived idea of the ‘healthy’ to particular cases? The same also applies to the affairs of life. Who among us does not talk about ‘good’ and ‘bad’, and about what is ‘advantageous’ or ‘disadvantageous’? Who among us does not have a preconception of each of these things? Is it properly understood, however, and complete? Show me that it is” (II, 17, 9–10; see [31]). In order to deal with the disease-related challenges “in the right way” and with the right attitude, it is necessary to examine one’s own misleading prejudices and to get rid of them, to clarify what one can expect from a doctor, to understand that diseases are often effects of a concatenation of several factors, and to engage in a demanding self-interpretation activity.
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In order to enter the intermediate world in which one can begin to care for oneself, one has to learn to know oneself, recognizing one’s own vulnerability and limits and those of others. According to the ancient metaphor analysed in the previous pages, one of the fundamental skills of the philosopher-doctor is the art of listening and using words, because the collaborative inquiry based on reflection and discourse helps the patients to interpret themselves, to name and give words to different parts of their experiences and feelings, to produce meaningful connections between the status quo and any possibility of change. At the same time, the way in which patients evaluate and describe themselves and their symptoms affects both the communication between doctor and patients, and the integral involvement of patients in treatment.
References 1. Hadot P. Philosophy as a way of life. Spiritual exercises from Socrates to Foucault. Malden: Blackwell; 1995. 2. Sharpe M, Ure M. Philosophy as a way of life. History, dimensions, directions. London: Bloomsbury Academic; 2021. 3. Foucault M. In: Martin LH, Gutman H, Hutton PH, editors. Technologies of the self: a seminar with Michel Foucault. Amherst: University of Massachusetts Press; 1988. 4. Cicero. On the emotions. Tusculan disputations 3 and 4. Chicago: The University of Chicago Press; 2002. 5. Seneca. Letters on ethics. Chicago: The University of Chicago Press; 2015. 6. Nussbaum Martha C. The therapy of desire. Theory and practice in Hellenistic ethics. Princeton, NJ: Princeton University Press; 1994. 7. Gowans CW. Medical analogies in Buddhist and Hellenistic thought: tranquillity and anger. In: Carlisle C, Ganeri J, editors. Philosophy as Therapeia, Royal Institute of Philosophy supplement, vol. 66. Cambridge: Cambridge University Press; 2010. p. 11–33. 8. Sassi MM. Indagine su Socrate. Persona filosofo cittadino. Torino: Einaudi; 2015. 9. Renaud F, Tarrant H. The Platonic Alcibiades I. The dialogue and its ancient reception. Cambridge: Cambridge University Press; 2015. 10. Plato. In: Cooper JM, editor. Complete works. Indianapolis: Hackett Publishing; 1997. 11. Gill C. La connaissance de soi dans l’Alcibiade de Platon. Études Platoniciennes. 2007;4:153–62. 12. Goldin O. Self, sameness, and soul in Alcibiades I and the Timaeus. Freiburger Zeitschrift für Philosophie und Theologie. 1993;40:5–19. 13. Kang C-U. Socratic eros and self-knowledge in Plato’s Alcibiades. J Greco-Roman Stud. 2008;32:79–102. 14. Remes P. Reason to care: the object and structure of self-knowledge in the Alcibiades I. Apeiron. 2013;46:270–301. 15. Renaud F. La conoscenza di sé nell’Alcibiade I e nel commento di Olimpiodoro. In: Migliori M, Napolitano Valditara LM, Fermani A, editors. Interiorità e anima. La psyché di Platone. Milano: Vita e Pensiero; 2007. p. 225–44. 16. Werner D. The self-seeing soul in the Alcibiades I. Anc Philos. 2013;33:307–31. 17. Cambiano G. Platone e le tecniche. Roma: Laterza; 1991. 18. Van Der Eijk PJ. Medicine and philosophy in classical antiquity. Doctors and philosophers on nature, soul, health and disease. Cambridge: Cambridge University Press; 2005.
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19. Banicki K. Therapeutic arguments, spiritual exercises, or the care of the self: Martha Nussbaum, Pierre Hadot and Michel Foucault on ancient philosophy. Ethical Perspect. 2015;22:601–34. https://doi.org/10.2143/EP.22.4.3127269. 20. Berges S. Virtue as mental health: a platonic defence of the medical model in ethics. J Anc Philos. 2012;6:1–19. 21. Gundert B. Soma and psyche in Hippocratic medicine. In: Wright JP, Potter P, editors. Psyche and soma: physicians and metaphysicians on the mind-body problem from antiquity to enlightenment. New York: Clarendon Press; 2002. p. 13–36. 22. Lidz JW. Medicine as metaphor in Plato. J Med Philos. 1995;20:527–41. 23. Lloyd GER. In the grip of disease. Oxford: Oxford University Press; 2003. 24. Longrigg J. Greek rational medicine: philosophy and medicine from Alcmaeon to Alexandrians. London: Routledge; 1993. 25. Pigeaud J. La maladie de l’âme. Étude sur la relation de l’âme et du corps dans la tradition médico-philosophique antique. Paris: Les Belles Lettres; 1981. 26. Stempsey WE. Plato and holistic medicine. Med Health Care Philos. 2001;4:201–9. https:// doi.org/10.1023/A:1011425102809. 27. Seneca. Dialogues and essays. Oxford: Oxford University Press; 2007. 28. Bobonich C, Destrée P. Akrasia in Greek philosophy. From Socrates to Plotinus. Leiden: Brill; 2007. 29. Dillon JJ. Teaching psychology and the Socratic method. Real knowledge in a virtual age. New York: Palgrave Macmillan; 2016. 30. Sellars J. Lessons in stoicism: what ancient philosophers teach us about how to live. London: Penguin Books; 2020. 31. Epictetus. Discourses, fragments, handbook. Oxford: Oxford University Press; 2014.
Chapter 3
Between the Doctor and the Patient: Origins of an Intermediate World Alfonso Maurizio Iacono
The hypothesis that I put forward here is that the intermediate worlds are many, and are those that can be defined as intermediate because they are conceptually and structurally related to each other and above all because each of them is not a monad, and cannot live without referring to another intermediate world. With the exception perhaps of dreams, each world builds its autonomy starting from the relationship with another world or universe of meaning, which, in turn, can be perceived out of the corner of the eye. Each world refers to at least one other world to which it resembles and from which it tends to become autonomous. Each world finds its autonomy within the relationship created with at least one other world.
Plato’s Prisoners In the myth of Plato’s cave (in the seventh book of the Republic) [6], the prisoner who has been freed goes out and sees the sun. Having gone out, crossed a border and encountered at least a couple of worlds, he has an enriched and “augmented” a cognitive plane compared to his companions who remain chained up in the cave. The relevant cognitive aspect here is precisely the comparison between worlds, which involves the ability to introduce relationships of similarity and difference and relationships of permanence and change. The whole theory of intermediate worlds is based on the fact that a new world is born from an imitated world, with the difference that imitation is not a copy, but something new that comes from something that already exists. A. M. Iacono (*) Department of Civilisations and Forms of Knowledge, University of Pisa, Pisa, Italy e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Pingitore, A. M. Iacono (eds.), The Patient as a Person, New Paradigms in Healthcare, https://doi.org/10.1007/978-3-031-23852-9_3
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Being mortals, we can only do this: Creatio ex nihilo—creation from nothing—it is forbidden to us and is a power that we could only attribute to a god. We mortals always build from something historically determined. The comparison must then be observed on two correlated levels: the spatial and the temporal one. Knowledge is always located and specific. Cognitively we always enter situated conditions. There is an arrow on which there is the past, present and future and the data of spatial comparison. The categories of space and time, and are not something that neurologists have just discovered but rather something which is being rediscovered and which history is very long. The whole discourse of the comparison of worlds is based on absence, on what is not there. Our mind is able to recall and produce the presence of absence. We are absent beings: the simulation and representation are a reference to “imagining something that is not there”. It also applies to time: what is being done about the past? Remembering—connected to the Latin cor, cordis, heart—means feeling an emotion, a disturbance, a disturbance of the homeostatic balance that brings to mind something that is no longer there. As Augustine knew well, the drama of the past is its irreversibility, that of the future its possibility. If we weren’t able to operate in absence we would not be human. We are not able to create from nothing, but we have the ability to imagine an absence by drawing it from something that already exists. In the medical discourse, the point of view of the other, that is of the patient, must become central. However, understanding the point of view of the other does not mean hearing what the other feels … I would therefore not use the term “empathy” which in the literal sense seems to involve “feeling inside” what the other feels. Putting yourself in the other’s shoes means that I feel what the other would feel, I pretend to try it. It is not a common feeling. This implies the fact that I capture the other’s emotion but I don’t have to participate in that emotion to understand it; I may have another emotion. Philosophers already noted this point with the theory of sympathy, which in the eighteenth century was proposed by Adam Smith and David Hume. The theory of sympathy tells us that putting oneself in the shoes of others means knowing the other’s point of view, while admitting diversity and otherness. There is a difference in the relationship and this is how it must be.
Damasio and the Self That Comes to Mind Antonio Damasio’s book [4] raises relevant questions regarding the field of medicine and neurocognitive rehabilitation. He was one of the first to emphasize the role of emotions in knowledge. LeDoux and others had worked on it and paved the way, but Damasio made an important contribution. The fundamentals I will recall are the map, process, self, emotions and feelings.
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In approaching the theme of the conscious mind, Damasio favours self. The self, the emergence of self, determines consciousness. The self, however, is not a characteristic linked to consciousness: consciousness is the last part of the process. When a cell is configured as a unity of meaning and function, a self emerges. The self is a characteristic of the living, it is a process and not a thing. Damasio applies a procedural logic to the self and from this point of view the philosophers with whom he relates are Baruch Spinoza and William James. Damasio is opposed to the cosalisation of self and refers to William James who makes the distinction between self and not-self made possible in consciousness by emotions and feelings. James wrote an essay, What is an emotion, where he explains the emotion of fear and observes that first our heart beats and then we become aware of it, reversing the rationalist model according to which we first become aware of a content that is scary and then our heart beats. The emotional element is a perturbation that activates consciousness, it is not consciousness itself and does not need consciousness to be activated. More than two centuries earlier David Hume had considered the self a fiction, a theater. The other relevant aspect of Damasio is the idea of a map: the brain draws maps both of the surrounding world and of its own processes and the maps are experienced not only as visual images, but as sensory images in more general terms. The brain also maps its own processes. Tell one “how do you think? How do you remember?”, It means bringing it to have a remapping of processes and of one’s own history of the body. It is not a process that we are aware of. Furthermore, we map with touch, smell, hearing. It is the senses as a whole that map. The maps, however, do not reflect and do not reproduce the world as if it were copies. How are the maps? With the map of the city it is not possible to see the details of the Region; with that of the Region, the details of the city are lost. A map is always a partial description of the world. Damasio also connects conscience and cooperation: the self and conscience do not have a privileged place or a single area. They are the result of configurations and cooperation between neurons. Cooperation is systemic. This is often underestimated. Cooperation systems are central in medicine as in rehabilitation. The body is an integrated and cooperative system. The cooperative processes of neurons aimed at forming a unit are similar to the cooperative processes of living systems and social systems. It does not mean that they are the same thing: the element of cooperation, however, is central to complexity and to life. Cooperation can be understood from the systemic point of view only from the point of view of complexity. By defining the augmented reality of the relations that are produced as a whole, we refer to complexity, something that goes beyond what can be grasped analytically by knowing anatomically only the components of the system. As the biologist Henri Atlan [1] asked himself, where is the boundary between an amoeba that moves to look for food, a dog that looks for food and a human being, the difference between a chemical-physical language and
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intentional language? We tend to give intentionality and conscience to the dog and not to the amoeba, even if both have the same goal (getting food) for cultural reasons. Where is the boundary between the living beings to whom we attribute something intentional and those to whom we deny it? In this sense, the observer makes choices and this happens within the context of observation. Neurons, cells, tissues, organs, living organisms and social organisms are cooperative and as such have the purpose of keeping one’s self intact in a processual form, regardless of consciousness. Damasio considers three levels of self: Proto-self: spontaneous feelings of the living body Nuclear self: modifications of the interaction between organism and object Autobiographical self: large-scale coherence in the interactions of the nuclear self What interests us is the autobiographical self in particular: knowledge is embodied, it is the characteristic of our biology. The fact that the patient is asked “what did you remember?” Recalls that there is a middle knowledge that can sometimes favour or hinder—there is a knowledge that is baggage that can become a resource or a hindrance.
Put Yourself in the Place of Another and Yourself Why is the autobiographical-self so important? Because the hypothesis is that in this way we have the feelings of ourselves and of our processes. And there is a social and relational element with which I also train myself to talk to myself. If one reads Hamlet’s monologues from a cognitive point of view, it is in them that what we call the consciousness of consciousness emerges. Indeed, in the case of Hamlet, there is the infinity of the relationship of consciousness that thinks of itself. Hamlet is that figure who, thinking of himself, does not doubt in the sense of being undecided (Hamlet is surely the one who decides); Hamlet’s problem is the game that conscience plays with itself in the antechamber of the decision of action. This is also of great importance in the relationship with the patient when a world has to be simulated and if he has to create it to act. The question of the autobiographical- self opens up that of the point of view, of the comparison between worlds other than the current one: the patient is asked for a perturbation within his autobiographical- self. It is the sympathy of the Enlightenment philosophers David Hume and Adam Smith. Now let’s observe Dürer’s Melancholia I image. Here we have a very particular condition, the moment that precedes the threshold of the construction of a world.
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The Angel seems to floating in midair: he is looking for what is missing, the future; he is looking into the past into the world and is in the position of a passage. Melancholy, which means “black humour”, is a condition of perplexity and has a sense of suspension of passage and action. The angel with the head on the resting hand has a look that does not look: it is not a sign of depression or indecision, but of the clear awareness of one’s limit. Melancholy is awareness of one’s limit. It is like when a man or a woman decides to go and see a sunset at the sea, and he notices the continuous change of colors that cannot be stopped except with photography, which however does not stop the incessant movement of the sky and the earth, it just suspends it. Here the sense of limit emerges, an enjoyment that is suffering because beauty escapes just as the desire is to stop the flow of it. In Dürer’s work there is the dodecahedron: a characteristic of melancholy is the mathematics that represents the extreme analytical clarity of awaiting consciousness. The first phase is a difficult transition phase, symbolized by the perplexed angel who is thinking in the anteroom of the decision. He does not yet have that condition of looking which addresses a specific past and a specific future.
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Returning to Damasio: neural networks mimic the body, map it, represent it, become its double neural. Leaving Damasio we find the categories: mimesis, maps, representations, doubles and splitting. Doubling because we talk to ourselves continuously even when we don’t realize it. We could not think and we would not have consciousness of conscience without dialoguing with ourselves. As Claude Bernard, the inventor of the concept of milieu intérieur (internal environment) and Walter Cannon to whom the concept of homeostasis is owed, living organisms are characterized by regulatory systems and are processes without a subject. Learning is the enrichment of equilibrium in perturbations. Emotions are to be considered as modifications of the states of the body and feelings as consciousness of the states of the body modified by emotions. When the patient is asked what he feels, the feeling is asked. The brain imitates but does not copy. The brain simulates the states of the body. Let’s take a famous painting by Magritte.
“Ceci n’est pas une pipe”: imitation is not a copy. Magritte radicalizes to the maximum: he makes a copy of the pipe but warns us that even with the maximum of similarity—even if we could not distinguish the copy and the original—even then, since I have made a replacement, the perfectly similar imitation is not a pipe. Thus the versions of the human condition in which the reproduced landscape covers what is behind, but the difference remains, indicated by the edge of the canvas. This is what distinguishes art from technical mass production.
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Then there is Escher: the gallery of prints merges with the landscape that includes the viewer and the gallery itself.
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Play and Change History implies a change as history. In the autobiographical-self and in the dialogue I change myself, I make history. History is awareness of the change in becoming, it is not chronology. It is not a set of dates. There is history when, simulating in- between worlds, we feel the moments of change. For this reason, play is of great importance: let’s think of the child who plays at being a soldier, the child who plays at being a mother: pretending that, giving birth to play and theater, creates the intermediate worlds. Silvio D’Amico, in his History of the theater, says that the origins of the theater are not only in the rite; they are already in the children’s play: “The most immediate and vulgar hypothesis on the origins of dramatic theater could be that which sees it born from a play: children who” play soldiers “, children who play the part of mothers with their doll” (see [3], p. 13). Children who play live with awareness of the fact that imitation is not a copy. And they are learning to be in another’s place and putting themselves in the other’s shoes. That’s where children begin to understand what it’s like to be in the theater, what it’s like to lie, pretend, etc. and everything that implies the relationship with the other and with the world. You can cognitively and emotionally imagine worlds where you can be in the other’s place, with disguises and fictions. The children there actually learn to build worlds: if they are already aware of pretending, it means that they already know how to compare worlds by crossing frames. We already know how to compare worlds and we learn it with play. An actor who becomes a character transforms himself into another. And when we simulate the past we imagine: the patient puts himself in the place of himself in the past and in the future. That’s why this is important: imitation is not a copy. Playing for substitutes and staying in the place of another are the origin of the intermediate worlds which is attested in the complexity of human relationships. And among this there is also that relationship between the doctor and the patient, between the therapist and the patient, who build intermediate worlds through these relationships based on listening and recognizing the other as another, as a person.
The Multiple Realities and the Intermediate Worlds William James in the Principles of Psychology observed that: “The sense that anything we think of is unreal can only come, then, when that thing is contradicted by some other thing of which we think. Any object which remains uncontradicted is ipso facto believed and posited as absolute reality” ([5], pp. 288–289). This statement refers to Spinoza’s Ethics. The interesting aspect of Spinoza’s and William James’s considerations concerns the emphasis implicitly placed on the concept of difference. If a mental object is not contradicted and therefore placed in a relationship of difference with another mental object, it presents itself to the observer as the absolute reality.
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Actually Spinoza and William James seem to think of contradiction rather than difference. A reality is absolute until it is contradicted. “Take again the horse with wings. If I merely dream of a horse with wings, my horse interferes with nothing else and has not to be contradicted. That horse, its wings, and its place, are all equally real. That horse exists no other-wise than as winged, and is moreover really there, for that place exists no otherwise than as the place of that horse, and claims as yet no connection with the other places of the world. But if with this horse I make an inroad into the world otherwise known, and say, for example, ‘That is my old mare Maggie, having grown a pair of wings where she stands in her stall,’ the whole case is altered; for now the horse and place are identified with a horse and place otherwise known, and what is known of the latter objects is incompatible with what is perceived with the former. ‘Maggie in her stall with wings! Never!’ The wings are unreal, then, visionary. I have dreamed a lie about Maggie in her stall” (Ivi, p. 289). But the question is: Isn’t our normal condition that of living in intermediate worlds? Believing in an absolute reality is an extreme situation that can occur in a dream (where, however, one has doubts and/or dreams of dreaming) or in an hallucination. The belief in absolute reality is the extreme condition of the chained prisoners of Plato’s cave. We normally live in intermediate worlds. When we immerse ourselves in a universe of meaning we do not abandon the other universes. The ability to know how to live in the coexistence of several universes in such terms that immersion in one world does not imply the exclusion of other worlds, but rather, so to speak, their lateral perception. A perception of theory from the corner off the eye.
The Copy and the Substitute The out of the corner of the eye idea necessarily implies the cognitive problem of perception of the frame. Let us take two examples, apparently so distant from each other, but which pose an analogous epistemological problem. First example: In A Theory of Play and Fantasy ([2], p. 177 sgg.) Gregory Bateson explains the terms of what he calls metacommunication with the story of two monkeys playing. Theirs was an imitation of combat, that is, it was combat/ non-combat. They nibbled, but they did not bite; they imitated combat, but did not fight; they replaced an action (that of fighting) with another (that of not fighting), which in turn copied the first. Actions that are similar, but which are not identical. To do this, Gregory Bateson observes, it is necessary for the two monkeys to exchange signals that correspond to the phrase “this is play” (ivi, p. 178), and this phrase involves a process of substitution. The statement ‘This is play’, if developed, takes the form: “These actions in which we now engage do not denote what those actions for which they stand would denote” (ivi, p. 180).
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It is a mimetic process of substitution.: The play of combat is a combat/non- combat. Nibbling presupposes the bite, and at the same time replaces it. Nibbling is an imitation of the bite, which in turn constitutes its necessary reference point. The action of nibbling acquires meaning—and a different meaning—only if the action of biting exists and is known by the participants, which functions as a reference and a junction point between the universe of meaning in which nibbling (play) and the universe of meaning in which biting (combat) dominates. The phrase “this is play” is like a frame that unites and, at the same time, separates nibbling and biting. Without this assured process of union and separation from the frame and, nibbling would not acquire the meaning desired by the monkeys, which is that of play. In becoming independent from what the bite denotes, nibbling maintains the relationship with the bite. The two monkeys playful nibbling perceived out of the corner of their eye, beyond the frame that binds the playful sense of nibbling, the universe of biting. Second example. Paul Cézanne paints the Montagne St.-Victoire. In his attempts he abandons the idea of reproducing what is visible and turns to painting which, through lines and colors, expresses assertions about the world. Cézanne’s Montagne St.-Victoire tends to be less and less a copy and more and more independent of the real Montagne St. Victoire. However, the relationship does not cease to exist, because we continue to recognize the mountain and the landscape around it in Cézanne’s paintings, even if the representation he gives of it is beginning to transcend them. The true mountain therefore continues to be a reference to the painted mountain, even if the painting following Cézanne will reach the point of rarefaction, abstraction, the epistemological doubt of the relationship between copy and model (Magritte and Escher). In the process of autonomization of the copy, which ceases to be a copy to become something else, the permanence of the reference serves to ensure, in the exaltation of the difference, the recognition of an original identity that moves further and further into the background and becomes perceptible only out of the corner of the eye. Therefore, in order to give meaning to a universe of meaning within which we live, we must always perceive out of the corner of the eye at least another universe of meaning that is next to the first and which is united to it and, at the same time, separated by a frame.
Multiple Realities and In-Between Worlds “We call—writes Schutz—a certain set of our experiences a finite province of meaning if all of them show a specific cognitive style and are—with respect to this style—not only consistent in themselves but also compatible with one another” ([7], pp. 551–552). What does Schutz mean by cognitive style? A set of specifications that characterize it as such. As an example he lists six characteristics of the specific
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cognitive style that expresses daily life: (1) the state of complete wakefulness; (2) the suspension of doubt; (3) work as an activity that carries out a project; (4) a form of perception of one’s self; (5) a form of sociality; (6) a time perspective. In relation to these six characteristics of the cognitive style of daily life (which are however only some of the characteristics) we can speak of reality. But it’s not just about that. The salient point consists in the fact that, through these characteristics, we tend to consider reality (of everyday life) as something natural. “This reality, Schutz observes, seems to us to be the natural one, and we are not ready to abandon our attitude towards it without having experienced a specific shock which compels us to break through the limits of this” finite “province of meaning and to shift the accent of reality to another one (Ivi, p. 552)”. Under the influence of Husserl, Alfred Schutz underlines what could be called the process of naturalization of the reality of everyday life, and suggests that we can abandon our attitude towards a reality that seems natural to us only through a trauma (shock), therefore a break. Basically, Schutz is telling us that we pass from one “finite province of meaning” to another through a traumatic process, which helps us to escape from the naturalized everyday reality and to enter other “finite provinces of meaning”, for example those that have to do with the various worlds of fantasy and the imagination. In this admirable essay, he provides us with a list of traumas that lead to other “finite provinces of meaning”: the leap into the world of dreams; the theatre after the curtain has risen and the spectator sees the stage; the vision of a painting and its universe inside the frame; the world of joke and laughter, when we accept it as something fictional; the world of play a child enters with toys; the various religious experiences. “All these worlds—the world of dreams, the imagery and phantasms, especially the world of art, the world of religious experience, the world of scientific contemplation, the play world of the child, the world of the insane—are finite provinces of meaning” (Ivi, p. 553). They are in that they satisfy three requirements: they each possess a particular cognitive style; the experiences of each of them are consistent in themselves and compatible with each other; they have a specific accent of reality. Furthermore, Schutz insists on the idea that the passage from one “finite province of meaning” to another can only occur through a shock, a leap (Schutz refers to Kirkegaard and his concept of “instant” as a leap in the religious sphere). And again, he identifies in the world of working in daily life “the archetype of our experience of reality. All the other provinces of meaning can be considered as its modifications” (p. 154). This means that the everyday life of the world of work is presented as that experience that has a paradigmatic value of reality for other types of experience that Schutz frames in the field of fantastic worlds (“The world of daydreams, of play, of fiction, fairy tales, myths, and jokes”, ivi, p. 555). After that Schutz tackles the world of dreams and the world of scientific theory. What Alfred Schutz underestimates is the fact that in everyday life we do not pass at all from one finite province of meaning to another through shocks, because we, with the exception of the dream, live in intermediate worlds, that is, in worlds that are not at all at one dimension, but they cross each other. We live in the coexistence of opposites. The frames that
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enclose the finite provinces of meaning imply an elsewhere, an outside, which remains present. The frame not only separates, but as it separates worlds, it unites them. Out of the corner of our eye we perceive the frame that separates and unites the worlds. Now, I believe that, in an epistemological context linked to the notion of complexity, the problem of reality must be strictly connected to the problem of borders, frames, contexts that separate and, at the same time, join the universes of meaning. As already mentioned, imitation is not a copy. Playing for substitution and staying in the place of another are at the origin of the intermediate worlds which, in a dialectic between imitation and creation, always arise from other worlds and which are attested in the complexity of human relationships. And among this there is also that relationship between the doctor and the patient, between the therapist and the patient, who build intermediate worlds through a relationship based on listening and recognizing the other as another, as a person.
References 1. Atlan H. Complessità, disordine e autocreazione del significato. In: Bocchi G, Ceruti M, editors. La sfida della complessità. Milano: Feltrinelli; 1985. p. 158–78. 2. Bateson G. Steps to an ecology of mind. Chicago: University of Chicago; 2000. 3. D’Amico S. Storia del teatro, vol. I. Milano: Garzanti; 1970. 4. Damasio A. The self comes to mind. New York: Pantheon Books; 2010. 5. James W. Principle of psychology, vol. II. New York: Holt & Co.; 1905. 6. Plato. In: Adam J, editor. The Republic, vol. 2. Cambridge: Cambridge University Press; 1902. 7. Schutz A. On multiple realities. Philos Phenomenol Res. 1945;5(4):533–76.
Chapter 4
A Systemic Approach to Health and Disease: The Interaction of Individuals, Medicines, Cultures and Environments Giampietro Gobo, Enrico Campo, and Emanuela Portalupi
Introduction Contemporary Western societies are influenced by two opposing trends: on the one hand a strong propensity towards simplification; on the other, a growing social demand for complexity. The first (which seems to be gaining further and further political, scientific, and intellectual credit) presumes to reduce the complexity of the world so radically it sacrifices comprehension. Consider, for example, some of the political proposals of movements classified under the (problematic) label of “populism” as well as the critical reactions towards these same movements made by those who, claiming we have entered a post-truth era, accuse them (in an equally simplistic manner) of being ignorant, stupid, and/or of spreading fake news. Both This research was funded by the Department of Philosophy “Piero Martinetti” at the University of Milan under the project “Departments of Excellence 2018–2022,” awarded by the Ministry of Education, University and Research (MIUR). Although this chapter is the result of collective work, sections “Introduction,” “The Biomedical Model of Health,” and “The Eclipse of the Universal Subject and the Emergence of the Situated Subject” have been written by Enrico Campo; sections “The Systemic Approach,” “Micromacro and Macromicro,” and “A Sociology of Chemical Processes?” by Giampietro Gobo; and sections “The Organization of Work and Circadian Rhythms,” “Which Health Model? A Few Proposals,” and “Conclusion” by Emanuela Portalupi. The article was translated by Ian Richard Richard, [email protected].
G. Gobo (*) · E. Campo Dipartimento di Filosofia Piero Martinetti, Università di Milano, Milan, Italy e-mail: [email protected]; [email protected] E. Portalupi ARESMA, Associazione di Ricerche e Studi per la Medicina Antroposofica, Milan, Italy e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Pingitore, A. M. Iacono (eds.), The Patient as a Person, New Paradigms in Healthcare, https://doi.org/10.1007/978-3-031-23852-9_4
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the “populist” movements as well as the standard bearers of “post-truth” theory can be considered an expression of what Edgar Morin called “the paradigm of simplification,” that is, that paradigm that “puts order in the universe and chases ot disorder. Order is reduced to one law, one principle. Simplicity can see either the one or the many, but it can’t see that the One is perhaps at the same time Many” [1]. The second trend is a counterpoint to the first, which feeds an ever greater social demand for complexity: the recurring economic and environmental crises, for example, can be considered complex events that have demonstrated how “refuge in simplification persists as an unstoppable temptation” [2], but is nevertheless unsuccessful [3]. The simplifying trend is also ever present in the medical sciences today. It is manifested directly in both the treatment processes themselves as well as in the very definition of what it is to be a human being. As Hilary and Steven Rose write, borrowing the famous expression from Donna Haraway, in the space of 20 years we have gone from reducing the human first to genes (genes‘R’us) and then to neurons (neurons‘R’us) [4]. An alternative to these reductionist trends is represented by a systemic approach to treatment and disease, which doesn’t presume to reduce either to exclusively physicochemical factors. To this end, let’s begin by discussing some key elements of systemic approaches and then critiquing the basic assumptions of the hitherto dominant approach in the medical sciences. We will then show how it is possible to consider health and disease as systemic processes by analyzing several cases situated at different levels of complexity. Finally, we will attempt to identify some trends in the current organization of care services that seem to be going in, what appears to us, a hopeful direction.
The Systemic Approach Systemic approaches seek to comprehend a given phenomenon as the result of the dynamic and non-linear interaction between different levels of a system, without reducing one to the other. The relationship between the different components thus remains central, rather than the specific components themselves. This is what organizes organisms, with their experiences of life, emotion, and consciousness. Both the analyst and decision maker are thus invited to think in terms of relationships, configurations and contexts: whether it is a single-celled organism or a human being, its components are so interrelated that any perturbation, at any point, can influence the whole system. Organisms are not merely members of ecological communities but are themselves complex ecosystems containing a multitude of smaller organisms that have considerable autonomy and are integrated into the functioning of the whole at the same time. It follows that it is impossible to identify the precise site (be it biological, physical, psychological, social, etc.) of a phenomenon, because the phenomenon (for example consciousness) is not localized. The same also applies to the more minute
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aspects: as known in quantum mechanics, a proton, for example, is not localized, but is found probabilistically within a field. Similarly, cellular life is not localized: it is a global property, which emerges from the collective interactions of the molecular species present in the cell, none of which are inherently living. And so the life of an animal or a person is the organized and integrated interaction of the heart, kidneys, lungs, brain, liver, blood and much, much more. Life, like consciousness, is an emergent property—a property that is not present in the individual parts and is generated only when they interact. Furthermore, a system does not inherently have boundaries: for example the moon influences the growth of a plant, the movement of the tides, etc. These ideas had already surfaced by the mid-nineteenth century with the school of English emergentism [5–7] and have continued to this day [8–10]. From this point of view, biological networks exhibit the same general principles as social networks, and if we propose to consider the human being as a whole person, a systemic approach to health and disease certainly offers more opportunities for knowledge and intervention than a reductionist vision. In the case of human beings, the self makes use of relational dynamics and is not a reservoir of knowledge, individual dispositions, or genetic configurations.1 Our uniqueness emerges from the interpersonal processes in which it takes part [11]. Each of us is different because no one has had the same social interactions. Certainly there are interactional overlaps (especially among those who have common origins, belong to the same gender, social group, and so on); these overlaps, however, are never such as to create identical individuals. Social interaction helps build the individual and their uniqueness. George Herbert Mead, at the beginning of the Twentieth century, had already argued that identity is constitutively formed by the relationship with the other and by mutual social recognition. Similar arguments were also made subsequently by Hannah Arendt and Erving Goffman [12, 13]. This definition also introduces a new notion of causality: individual events do not always have a recognizable cause. They can happen spontaneously, without any single event causing them. We can never predict when and how such a phenomenon will occur. We can only predict its probability (statistical causality). It is therefore only the whole that determines the behavior of the parts, in its constantly dynamic activity of self-regulation [14] which allows us to grasp the nature of the manifestation. What are the consequences with respect to the medical approach? What are the consequences with respect to how we define the concepts of health and disease? A strongly reductionist view of genetics, quite popular until a few years ago, states that each of us is unique thanks to our DNA. However, the DNA in all humans is identical in 99.9% of cases. It seems unlikely that individual differences solely depend on the remaining 0.1% and can simply be reduced to the color of our eyes, hair, etc. or certain risks to certain diseases or deviations. Even more so when you consider that analyzes of the differences in the DNA sequences of humans and chimpanzees have demonstrated that the two species are approximately 98.5% identical. Is it then credible that the difference between a human and a chimpanzee is based solely on DNA that is 1.5% different? Similarly, as theoretical physicist Emilio del Giudice once said, “although an adult is made up of 65–70% water, it is necessary to explain why we are not merely a… puddle.” 1
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The Biomedical Model of Health A substantial part of Western medical knowledge has been based, and is still based, on a standardized, standardizing, and universalist approach: the so-called biomedical model of health [15]. Conventionally, a first formulation of this model can be traced back to Louis Pasteur’s theory according to which germs infect organs from the outside and thus cause disease. Conversely, health is thought of as the absence of disease, or as the absence of a pathogen [16]. The universalist assumption guides the understanding of both the action of the pathogen and the treatment of the disease, which is consequently prescribed in a substantially similar manner in all individuals affected by the same disease. In its basic assumptions, the biomedical model of health tends to be monocausal and linear; it is also thought to be universally applicable, inasmuch as it is objective and ideologically neutral [17]. At the same time, since “the individual body becomes the focus of intervention, and health and illness become primarily viewed as individual responsibilities” [15], this model tends to focus primarily on physical-biological rather than psycho-social factors. Experimental and laboratory methods respond to this need since they provide a universally reproducible setting designed to keep social and cultural variables under control. The advantages obtained from the biomedical model are undoubted and evident—consider the introduction of the practice of the sterilization of operating rooms for example—but over the years it has received various criticisms, both from the medical sciences and from other disciplines. In fact, it does not capture reality in its entirety or in its individual manifestation. In particular, the same idea of a precise and automatic correspondence between a specific pathogen and a corresponding disease is valid only for a limited number of pathologies. It does not apply, for example, to non-communicable diseases. The contemporary situation has highlighted the need to take care of communicable diseases, the maternal-infant area, old age, and chronicity as well as their socio-cultural contexts. Moreover, the microbiologist René Dubos had noted already by the 1950s that “most disease states are the indirect outcome of a constellation of circumstances rather than the direct result of single determinant factors” [18] and that not all people who came into contact with a pathogen later contracted a disease. More generally, the model has been accused of excessive reductionism and strong biological determinism. The systematic underestimation, both in treatment and etiology, of personal, psychological and social factors leads to a reductionist view of health. Finally, the model has also been criticized because it tends to reproduce a mechanistic view of the body and, consequently, an artificial dualism between the mind and the body. One of the greatest risks faced is the reification of the patient themselves, whose experience and knowledge of the disease is thought of as substantially irrelevant—inasmuch as it is subjective and unscientific—for the purposes of treatment and must find its accommodation elsewhere. Yet, it has been highlighted by many that the objectivity, neutrality and universality of the model are actually obtained by concealing the historical and social
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conditions of its formulation and implementation. The universal subject postulated by the model is more an epistemological fiction than the result of scrupulous investigations. As Ludwik Fleck wrote in 1936 in The Problem of Epistemology: The fundamental error in many discussions from the field of epistemology is the (more or less open) manipulation of the symbolic epistemological subject, known as “human spirit,” “human mind,” “research worker” or simply “man” (“John,” “Socrates”), which has no concrete living position, which does not basically undergo changes even in the course of centuries and which represents every “normal” man regardless of the surroundings and the epoch. Thus it is to be absolute, unchanging and general. […] That symbolic “human spirit” is an asocial and ahistorical being: being the only one, unique, hence solitary, it has no communication with anybody, it does not enter into discussions, does not cultivate the art of imitation, has no companions, friends or enemies. [19]
Based on the fundamental biological similarity of human beings, the knowledge produced by the medical sciences was (and in part still is) thought of as valid and applicable in all contexts.
he Eclipse of the Universal Subject and the Emergence T of the Situated Subject This universalist assumption was subjected to strong criticism during the twentieth century and it was widely shown that the subject, thought of as universal, was actually the product of a specific social context, and therefore expressed the traits of the dominant social groups in that context. Feminist and anti-colonial perspectives have highlighted how this “universal” subject actually has well-defined social traits: male, white, heterosexual, Western, Christian and neurotypical. From this point of view “the myths of the ideal rational person and the ‘universality’ of propositions have been oppressive to those” [20] who could not or would not conform to hegemonic standards. Both gender medicine and indigenous medicines have analyzed the political significance and epistemological weakness of the biomedical model. The situated nature of every individual was thus placed in the foreground, whose involvement is in any case essential throughout the therapeutic process. The now classic studies on AIDS, conducted by sociologist Steven Epstein [21], are paradigmatic in this sense: activist movements, mostly composed of patients themselves, questioned some implicit assumptions of the experiments and transformed their marginal position into an active and authoritative contribution. One of the areas in which the contradictions of the biomedical model are most evident is probably that of mental illness, which in turn is conceptualized in exclusively biological terms. Neurodiversity studies—a field of study contributed to by researchers from different disciplines—have strongly contested the idea that a “non- normative pattern of neurodevelopment” is necessarily and automatically “psychologically unhealthy” [22]. As autistic scholars themselves have long demonstrated [23], having a cognitive and affective development that diverges from the majority of the population—neurotypical, that is, having a “predominant neurotype”—does
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not necessarily mean one has a disease, nor an impairment of one’s own developmental potential. In this sense, taking into account the patient’s point of view also reduces the risk that medical interventions translate into procedures for normalizing cognitive diversity: “neurodiversity perspectives do not exclude the use of all interventions, only those that seek to ‘normalise’ an individual in a damaging and futile attempt to produce a person closer to a neurotypical ‘ideal type’ or by removing traits that are disliked by neurotypicals but benefit the neurodivergent individual” [22]. This question is closely linked to the medicalization [24] and biomedicalization [25, 26] processes that have characterized Western societies in recent decades: problems that were not previously considered to be medical were later defined and treated as medical problems, and thus labeled as diseases or disorders. The biomedical model applied to mental illnesses is also inclined to recognize the culturally specific nature (culture-bound) of some non-Western diseases, but assumes other typically Western diseases are universal. The joint action of these two processes (medicalization and unacknowledged Western specificities) has greatly increased the number of diagnoses at the international level of diseases that have their origin in the West, especially in the United States [27, 28]. Consider for example attention deficit/hyperactivity disorder (ADHD), which was one of the first case studies of medicalization processes in the United States, the diagnoses of which, together with its pharmacological treatment, have progressively spread around the world [29, 30]. The criticisms of standardized and universalist perspectives have, on the one hand, highlighted the central role of specific historical and social contexts and, on the other, restored the patient’s point of view as being central as well. More generally, they have demonstrated that health and illness cannot be reduced exclusively to physical and biological factors: health and illness are expressed in a biography and, namely, must be considered as (also) social constructs. In this regard, Peter Conrad and Kristin Baker [31] have identified three analytical levels. First of all, some diseases have a strong social stigma (AIDS for example) which is not necessarily linked to the biological specificities of the disease, but which strongly influences the way in which it is dealt with and experienced. Secondly, subjects comprehend and deal with diseases according to their knowledge base whose origin and modes of diffusion are necessarily social. Thirdly, medical knowledge itself originates within a process that is social from the start and is therefore linked to the contexts in which it was created. Finally, contextual and cultural factors interact with physical-biological ones both in the genesis and development of a disease as well as in its diagnosis and treatment. Another example comes from the prescription of medicinal products. Evidence and experience demonstrate that the dosage of medicinal products must be adjusted individually. The response is different if the sick person is a child or an elderly person, if it is a woman, whether she is pregnant, or on the basis of skin type, the culture and the place in which they live, such as for example Japan, Europe or the USA [32–34]. Further still, the method of administration or the time of day we administer a drug can even affect the outcome [35]. Finally, even the type of environment is
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relevant (climate, geology, mountains or plains, etc.), which affects our interaction with medications. For which, the current understanding of pharmacokinetics is causing us to have to deepen and further apply the different responses to medications based on age, gender, geographical origin, to the chronobiology of administration, etc.
Micromacro and Macromicro The importance of contexts not only concerns the macro (social contexts, cultures, environmental contexts), but also areas normally thought of as “micro.” If we take a person for example, although their genes (micro) are present in their body structure, they are not necessarily always expressed. To be so, they need interaction with the surrounding environment (also micro). In fact, DNA resembles more a library that contains many books; the fact that they are there, in itself is irrelevant if there is not someone there to take them off the shelf and read them. Similarly, from a neurological point of view, CPEB (a molecule present only in the nervous system and in all synapses) must be activated in such a way as to activate memory genes in order for information to pass from short-term to long-term memory. However, serotonin is required to activate CPEB, a molecule that functions as a neurotransmitter in the synapses. But even serotonin, in turn, is activated only if stimulated from the outside, that is, from the world through the body that experiences it [36]. Consequently, there is a continuous exchange and synergy between levels, which, depending on the point of observation, can be identified as micro or macro. The micro insinuates itself into the macro (and vice versa), it conditions and redefines it in completely unexpected ways. The micro reflects the macro in its own unique way, as we’ve known at least since Plato and Aristotle. PM10 (fine particulate matter) is a type of vector which carries the pollutants present in the atmosphere through the respiratory tract into our body. One of these substances is “black carbon” (BC). Directly produced by combustion engines, it is extremely harmful because it contains polycyclic aromatic hydrocarbons (carcinogenic substances). The peculiarity of BC is marked spatial variability: it is present in high concentrations in the vicinity of the source of pollution (the road), but is rapidly dispersed within a few hundred meters. It is even possible to detect a different concentration of BC between the center of the road and the nearest sidewalk or green space. In fact, profound differences have been found in the quantity of BC inhaled according to the road, due to the different intensities and qualities of the traffic: in a restricted or pedestrianized traffic area, the presence of BC in the air is profoundly different from that recorded, a few hundred meters away, along a highway. Although the data of the control units, which detect the value of the daily average concentrations of PM10, correctly give us a homogeneous value of the average concentration of PM10 which is valid for the entire area, the BC marker represents a “proximity indicator” (on the quality of air that we actually breathe area by area, neighborhood by neighborhood, street by street) that is even more valuable and
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useful. Even breast milk reflects these different conditions [37, 38], with a possible impact on infant neurodevelopment. The study of epigenetics therefore has much to teach us [39]. Sharma and Kumar [40] have analyzed over 160 studies in which the exposure of children to fine particles was verified above all. They even specifically considered different types of stroller with respect to height, width, and the ability to accommodate one or two children. Their research suggests that children are exposed to 60% more air pollution than their parents or those pushing a stroller. This can have serious repercussions on their brain development (damage to the frontal lobe and affect their cognitive abilities). Children are at heights between 55 and 85 cm, which means their faces are less than a meter above the ground and nearer to the exhaust pipes of automobiles. Additionally, infants breathe in greater quantities of the particles present in the air due to the size of their lungs and their body weight with respect to adults. Thus, the height at which most children travel in strollers doubles the likelihood of the negative impacts of air pollution compared to an adult. This research clears away the convenient clichés according to which fighting against smog and traffic is either conducted at a macro level (which must also be done anyway) or has no effect. To the contrary, it is possible to activate a series of micro-measures and initiatives that can be rapidly implemented at zero cost on an urban, zonal, neighborhood and street scale, which have direct and measurable effects on the quality of air we breathe every day, allowing us to save lives: hedges along the road separating vehicles from pedestrians that increase the space between roads and sidewalks; strollers built with a bubble of clean air around the baby’s breathing area; avoiding busy streets, traffic lights, and bus stops and using covers for strollers in order to reduce exposure to pollution. At least some of these measures could be activated immediately, even with a simple local ordinance. Similarly, micro elements such as D vitamins (D1, D2, D3, D4 and D5, of which the most important are 2 and 3), which among various functions consolidate the bones and are essential for the immune system, need solar radiation to work (which arrives even when the sky isn’t clear, because it passes through the clouds), which is a macro element. So without spending time outdoors, these vitamins work less. The sanatoriums (when tuberculosis was more widespread) were located in the mountains for this reason: solar radiation (the basis of heliotherapy) arrived in greater quantities because it was less filtered.
A Sociology of Chemical Processes? The technologies available to chemistry make it possible to synthesize (in the laboratory) molecules similar to biological molecules. If we take vitamin C for example (which is chemically known as l-ascorbic acid), from a purely chemical and functional point of view, there is no difference between that obtained biologically and that obtained synthetically. The latter, in fact, maintains biological activity and bioavailability unchanged.
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However, in nature ascorbic acid doesn’t exist isolated on its own. We always find it merged and integrated with many other molecules (trace elements, vitamins, enzymes, salts) within plants and fruits like oranges, hibiscus, (and in even greater concentrations in) rose hips, and acerola cherry, from which it is derived. Thus the differences between the synthetic and the biological form are not to be found in vitamin C itself, but in the substances associated with it and their interactions. This set of substances (active ingredients, which have a therapeutic effect, and secondary metabolites, i.e. all those substances other than the active ingredient that improve intestinal absorption, trigger antioxidant activity, activate transport, storage, degradation and its elimination from the body) are called a ‘phyto-complex.’ Within it, the action of the substances is synergistic. What does all this imply? That ascorbic acid on its own struggles to be effective, because every single substance of the phyto-complex has its own particular biological and chemical function that makes vitamin C more compatible with human physiology. The effectiveness of ascorbic acid is therefore obtained from the synergistic and polyvalent action of the entire group, rather than the single substance on its own. In other words, the therapeutic effect is an emergent property that arises precisely from the interaction between the substances. It does not pre-exist the synergistic interaction, because the single active ingredient alone would never be able to provide the same therapeutic effects.2 For example, one study [41] found that ascorbic acid associated with lemon extract was 35% more bioavailable than ascorbic acid alone. So taking 100 mg of synthetic vitamin C and taking the same amount from a standardized l-ascorbic acid acerola extract is not the same thing. Not because the vitamin C itself has a different biological activity; but because it lacks the other (rather useful) substances associated with it. In a phyto-complex, the therapeutic effects (due to the effect of the synergy of the components) are greater than the sum of those of the individual molecules contained and the side effects are generally inferior.3 The case of vitamin C, with all the interactions between its components, is configured like a sort of sociology of chemistry, as is also the case in the following example. 2 At conference in March 1911 (which would later appear in the book An Occult Physiology) Rudolf Steiner offered the example of salt (sodium chloride), a mineral. It is composed of chlorine and sodium, i.e. a gas and a metal respectively, which have nothing in common. Hence, the properties of sodium chloride do not pre-exist the chemical interaction of these two components, but emerge precisely because of the interaction. Similarly aqua regia (“regal water” or “royal water”), a mixture of nitric acid and hydrochloric acid (invented in 1300), is so called because of its ability to dissolve gold (the most “noble” of metals), which however is unassailable by either of these when they are applied… individually. 3 In fact, high doses of synthetic vitamin C can provoke some problems (for example diarrhea, kidney problems or heartburn—it is an acid after all…) due to the fact that large quantities are not always absorbed, unlike organic vitamin C, where the high concentration of tannins in acerola activates an astringent effect that counteracts the potentially laxative effect of synthetic vitamin C. Moreover, the biological version has a greater effect with enormously lower quantities [42].
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Several studies have in fact documented how social acts can modify the chemistry of our body. People who habitually practice acts of kindness for example are shown to reduce cortisol levels (the stress hormone) by up to 23% and are less exposed to the symptoms of hypertension. In this regard, neuroscientist and pharmacologist Candace B. Pert [43] has demonstrated how, smiling and being kind, releases very small molecules of powerful chemicals in the brain such as oxytocin, dopamine, endorphins and serotonin (a neurotransmitter that makes us feel satisfied). So being kind, helping those around us, and acting altruistically stimulates the production of serotonin (the same hormone utilized by many medical antidepressants): it soothes suffering, generates a feeling of natural calm and produces happiness. Compassion also induces a lower heart rate and reduces coronary stress. Furthermore, a gesture of kindness increases serotonin not only in those who perform it, but also in those who receive it and in those who assist you. Then, at the next level, more endorphins are also produced, which are natural pain relievers more effective than morphine. It also stimulates oxytocin (the cuddle hormone) which, when released, helps in social relationships and strengthens bonds. It also has an immediate calming effect, increases confidence and generosity, and strengthens the immune system and virility. Several researches [44, 45] showed how a single week of making an effort to be courteous (both to relatives and strangers) was enough to positively change parameters such as blood pressure, cortisol, and endorphin levels. Daniel Lumera, a teacher and master of meditation, together with epidemiologist Immaculata De Vivo [46], one of the leading experts in telomere research (the portions of DNA found at the ends of chromosomes to protect them and which slow the aging process), have shown that positive feelings and meditation not only play an emotional role, but also have a positive impact on our DNA and genes: they help fight inflammation and oxidation that accelerate the aging process. Moreover, meditation is one of the recommended practices for preventing cardiovascular diseases and in supportive therapies in oncology.
The Organization of Work and Circadian Rhythms Health and disease would thus seem to be largely dependent on individual, social and environmental factors. And one of the specific aspects of the relationship between human beings, society and the environment is given by its temporal dynamics determined by circadian rhythms: “the human circadian system consists of the master clock in the suprachiasmatic nuclei of the hypothalamus as well as in peripheral molecular clocks located in organs throughout the body. This system plays a major role in the temporal organization of biological and physiological processes, such as body temperature, blood pressure, hormone secretion, gene expression, and immune functions, which all manifest consistent diurnal patterns” [47]. Novalis wrote: “Every disease is a musical problem. Every cure is a musical solution.” Here the biological rhythm is considered a genetic-health factor. However, many facets of modern life, such as work schedules, travel, and social activities, can
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lead to sleep or wake and eating schedules that are misaligned relative to the biological clock. The alteration of circadian rhythms (the sleep/wake cycle, light/dark rhythms), typical (for example) of shift work, increases the probability an individual will develop an oncological,4 cardiovascular, psychological or metabolic disease, in addition to a possible sleep disorder, anxiety, depression, or fatigue [49], cardiovascular, psychological, and metabolic pathologies, as well as sleep disorders, anxiety, depression and fatigue [47]. Therefore, multimodal and psychoeducational approaches can act in the supportive care and primary, secondary, and tertiary prevention of these pathologies, as well as have a beneficial effect on symptoms and on autonomic self-regulation and should be included in future treatment strategies.
Which Health Model? A Few Proposals “How should we define health?” [50] asked Machteld Huber, a medical researcher and founder of the Positive Health philosophy. This question has sparked a future- oriented global debate. Different approaches have recognized that there is no standard concept of health, valid for all contexts and for all subjects belonging to a given context. Indeed, the same terms health and disease must be reinterpreted because they relate to concepts that belong to the spirit of the times and have evolved significantly quite recently.5 The idea has progressively gained ground that health is no longer conceivable as a simple absence of disease, but is framed in a positive definition, capable of guiding the various possibilities of treatment. As we have seen, every individual experiences health in a subjective way, and in close relationship with his being inserted in an environmental and social context (family, work, relationships, culture). Similarly, health is not only conceived of as physical integrity, but, as also stated by the WHO definition: “health is a state of complete physical, psychological and social wellbeing.” More recently, in dialogue between patients and care givers, more complex and multifaceted concepts have evolved that attempt to also look at disease as an opportunity for personal growth and learning. For example, the Positive Health movement [51] born in the Netherlands (www.iph.nl), or the Whole Health Institute (www. wholehealth.org), developed in the United States, go in this direction. These good practices identify empowerment, resilience, sense of purpose, meaningfulness, skill-building support, symptom treatment, connection, and community as keywords of the health-disease-healing dynamic. These guidelines therefore refer to This is the case in female workers whose work included night shifts, in which the relative risk of breast cancer was increased [48]. 5 In antiquity health and healing were seen as facts of life closely linked to the relationship with nature and with spirituality. Often health resorts were near places of worship and in contexts where the genius loci was favorable (something reflected in our overwinter stays or thermal or thalassotherapy treatments). 4
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patient centered care, or the need to place the individual in their uniqueness and entirety at the center of care, taking the various levels that make it up into account: bodily, biological, psychological, spiritual, and social. Traditional integrative and complementary medicine (TCIM) has included similar concepts from the outset, starting from specific worldviews. This involves proposing to health personnel—doctors, nurses, psychologists, therapists, counselors, etc.—an expansion of their perspective as well as their tools and skills, with a positive return for care givers themselves. It is therefore necessary to accept patients’ requests to be an active part in treatments and to share with them the choices of the therapeutic path, which also implies a greater attention to the value attributed to the subjective evaluation of treatments received, by enhancing patient reported outcomes for example [52]. In fact, in order for treatment pathways to produce lasting changes in lifestyle thereby allowing effective empowerment, they must be integrated with experiential aspects of the patient’s life. Certainly, many patients ask for individual training and the opportunity to learn; but also to be seen and understood [53] and to be able to express their experiences and changes in relation to the disease and to the therapy [54]. Some research methodologies include, for example, the role of ‘expert patient.’ In this direction, medical systems based on a holistic vision of the person and their health, and on the multi-professionalism of the therapeutic team, represent an interesting model of intervention and the implementation of good practices. An example is TCIM (Traditional, Complementary and Integrative Medicine) as defined by the WHO, in its various formulations by culture and geographical areas of the world. TCIM is the home of numerous medical concepts and systems, such as traditional Chinese medicine, Ayurvedic medicine, homeopathy, anthroposophical medicine and traditional local medicines. TCIM is characterized by integrating conventional, pharmacological and non- pharmacological treatments with other approaches based on artistic experience, movement, nursing care, and the biographical interview. They are different methods that appeal to the activation of the patient and that awaken latent healing resources that are very different from each other. Additionally, TCIM proposes research strategies that take global health into account, by developing treatment approaches aimed at chronic diseases for example or by helping to address collective problems such as antimicrobial resistance [55, 56]. These medical systems are primarily oriented towards quality of life, but are not limited exclusively to it; moreover, they are not only aimed at the patient, but also at the care givers themselves, in order to prevent burnout [57]. This also has important implications on the quality of doctor- patient communication and on the training of medical students [58]. Finally, the intercultural dimension of the problem is relevant, in particular in countries with a strong variety of cultures, for example with significant migratory flows [59]. For example, a few years ago, the anthroposophical hospital of Havelhöhe, near Berlin, was commissioned to provide health care in the nearby refugee camp. The people housed in the camp had a particular appreciation for being able to receive treatments with natural medicines alongside conventional treatments and a quality of listening and intervention that was attentive to even their spiritual and biographical needs.
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Putting the patient at the center also means being attentive to individual choices and preferences and proposing a tailored and sustainable treatment.
Conclusion From the different perspectives presented in this essay, the need for a systemic, relational, and contextual medicine emerges that takes reciprocal interactions between different spheres into consideration without attributing ontological priority to any one in particular. The opportunity for a complex and inclusive healthcare emerges. The same categories of micro and macro (and the events we place in them from time to time) are continuously redefined in light of different levels of observation and interaction between the parts. If we want to imagine a healthcare that centers around the patient’s needs, beliefs and intentions, it is necessary that care givers invest in the enrichment of their experiences and therapeutic tools, as well as in the partnership with patients and related associations. It is therefore necessary to continue to rethink, along with the concepts of health and disease in continuous evolution, and develop effective, satisfactory and sustainable models, insert learning processes and best practices into training and places of care, and to continue to produce research that affects the knowledge and policies related to health and the environment.
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41. Vinson JA, Bose P. Comparative bioavailability to humans of ascorbic acid alone or in a citrus extract. Am J Clin Nutr. 1988;48:601–4. 42. Thiel RJ. Natural vitamins may be superior to synthetic ones. Med Hypotheses. 2000;55:461–9. 43. Pert CB. Molecules of emotion: the science between mind-body medicine. New York: Scribner; 1999. 44. Park BJ, Tsunetsugu Y, Kasetani T, Kagawa T, Miyazaki Y. The physiological effects of Shinrin-yoku (taking in the forest atmosphere or forest bathing): evidence from field experiments in 24 forests across Japan. Environ Health Prev Med. 2010;15:18–26. 45. Torrente P, Kinnunen U, Sianoja M, de Bloom J, Korpela K, Tuomisto MT, Lindfors P. The effects of relaxation exercises and park walks during workplace lunch breaks on physiological recovery. Scand J Work Organ Psychol. 2017;2:2. 46. De Vivo I, Lumera D. Biologia della gentilezza: le 6 scelte quotidiane per salute, benessere e longevit?? Milano: Mondadori; 2020. 47. Cable J, Schernhammer E, Hanlon EC, et al. Sleep and circadian rhythms: pillars of health—a Keystone Symposia report. Ann N Y Acad Sci. 2021;1506:18–34. 48. Manouchehri E, Taghipour A, Ghavami V, Ebadi A, Homaei F, Latifnejad Roudsari R. Night- shift work duration and breast cancer risk: an updated systematic review and meta-analysis. BMC Womens Health. 2021;21:89. 49. Briguglio G, Costa C, Teodoro M, Giambò F, Italia S, Fenga C. Women’s health and night shift work: potential targets for future strategies in breast cancer (Review). Biomed Rep. 2021;15:98. 50. Huber M, Knottnerus JA, Green L, et al. How should we define health? BMJ. 2011;343:d4163. 51. Heerkens YF, de Weerd M, Huber M, et al. Reconsideration of the scheme of the international classification of functioning, disability and health: incentives from the Netherlands for a global debate. Disabil Rehabil. 2018;40:603–11. 52. Koster EB, Baars EW, Delnoij DMJ. Patient-reported quality of care in anthroposophic and integrative medicine: a scoping review. Patient Educ Couns. 2020;103:276–85. 53. Roy J, Williamson E, Pitt K, Stanley N, Man M-S, Feder G, Szilassy E. “It felt like there was always someone there for us”: supporting children affected by domestic violence and abuse who are identified by general practice. Health Soc Care Commun. 2022;30:165–74. 54. Evans M, Bryant S, Huntley AL, Feder G. Cancer patients’ experiences of using mistletoe (Viscum album): a qualitative systematic review and synthesis. J Altern Complement Med. 2016;22:134–44. 55. Kienle GS, Ben-Arye E, Berger B, Cuadrado Nahum C, Falkenberg T, Kapócs G, Kiene H, Martin D, Wolf U, Szöke H. Contributing to global health: development of a consensus-based whole systems research strategy for anthroposophic medicine. Evid Based Complement Alternat Med. 2019;2019:e3706143. 56. Baars EW, Zoen EB, Breitkreuz T, et al. The contribution of complementary and alternative medicine to reduce antibiotic use: a narrative review of health concepts, prevention, and treatment strategies. Evid Based Complement Altern Med ECAM. 2019;2019:5365608. 57. Ben-Arye E, Zohar S, Keshet Y, Gressel O, Samuels N, Eden A, Vagedes J, Kassem S. Sensing the lightness: a narrative analysis of an integrative medicine program for healthcare providers in the COVID-19 department. Support Care Cancer. 2021:1–8. 58. Ortiz M, Teut M, Ben-Arye E, et al. Can complementary medicine enhance doctor-patient communication skills? Insights from an international medical student project. Complement Ther Med. 2018;41:283–6. 59. Ben-Arye E, Bonucci M, Daher M, et al. Refugees in conflict: creating a bridge between traditional and conventional health belief models. Oncologist. 2018;23:693–6.
Chapter 5
The Ward as a Scene Alfonso Maurizio Iacono and Alessandro Pingitore
aturalisation of Roles: That of Doctor and Patient N in the Ward In agreement with Pirandello, according to whom the theatre can be considered the ideal place for the representation of social roles, the hospital ward can be a natural theatre where everyone wears a mask according to the role they play. One of the many masks, as Pirandello claims, that a man wears according to the situation or circumstance he is living. The hospital’s masks are well defined in terms of characters, costumes and roles, according to a pyramidal hierarchy, which is conferred not only by the role played, but above all, by the meaning that the specific role plays. The doctor has to deal with people’s health, that consciously or unconsciously is an invaluable asset for everyone. This, therefore, automatically and naturally generates power in the hands of the doctor. Thus, the masks are such: the doctor is the dominant and wears an independent mask, the patient is weak and wears a dependent mask. The dependency is strong and creates a strong bond. This kind of inequality between doctor and patient is like the dialectic of the servant and the lord described by Hegel, where two men recognise each other, but on the level of inequality. One is the lord, Robinson, the other is the servant, Friday. It is true, Hegel wants to demonstrate the strength of recognition and relationship precisely by showing how in the most obvious inequality, as can be seen in the comparison between the lord and the servant, there emerges the dependence on the relationship even by the stronger
A. M. Iacono (*) Department of Civilisations and Forms of Knowledge, University of Pisa, Pisa, Italy e-mail: [email protected] A. Pingitore Clinical Physiology Institute, CNR, Pisa, Italy e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Pingitore, A. M. Iacono (eds.), The Patient as a Person, New Paradigms in Healthcare, https://doi.org/10.1007/978-3-031-23852-9_5
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participant. The lord is also dependent on the servant. His self, his identity, is linked to the recognition given to him by the servant; his autonomy is bound by the relationship. This constraint, which links the autonomy of an individual to his or her relationship with another, remains as much in relationships of inequality as in relationships of equality, whether the other takes the form of a subject, a subordinate, a servant, but also of a son, a pupil, a patient, or of an equal, such as a lover, a friend, a colleague. The characters of the ward masks are by nature excessive, since the themes dealt with are extreme, such as suffering, death, pain, but also joy and healing. The crystallisation of these roles favours their naturalisation. If social categories form the basis for the classification of nature, naturalisation consists in the fact that social categories show themselves as the effect of the classifications that nature would spontaneously offer us. Thanks to this instrument of Syrian technology, he will be able to look at the same things as any terrestrial observer inside the clinic. But will things be seen in the same way? Let’s see what happens in a clinic between 10 and 11 am. Normally there is the “rounds” of the doctors in the wards. It is one of the most important moments in the daily life of the clinic. The head doctor, followed by the assistants, followed by the residents, followed by the interns, goes from one patients’ bed to another. It is time for the general check-up. Control of the patients, but above all control of the charts that represent the patients, or more precisely, the conditions of this set of heart, liver, stomach, thumbs, eyes, glands, which are the patients. Control of the work of the nurses, control of the work of the doctors by their superiors. The daily tour in the clinic is very similar to the inspection in the barracks and has, after all, a similar function. And in asylums it is difficult to understand whether they are clinics that resemble prisons or prisons that resemble clinics. After all, clinics, prisons and asylums all respond to the logic of internment. However, what is this function? Faced with this question, the answer of the terrestrial observer and that of the observer of Sirius will most likely be different. The terrestrial observer will see a technical and scientific function, those that make a clinic a clinic. The observer of Sirius, on the other hand, could see what the terrestrial observer does not see because of an excess of evidence. It might be seen as a collective ritual, and more precisely a ritual of a hierarchical power that represents itself and self-asserts itself every morning in the “rounds”, in the hierarchical position among doctors, in the communication relationship established between the whole staff and the single patients, in all those acts, in short, through which a total institution, as the clinic actually is, represents itself as a ourselves. It may be, however, that the terrestrial observer will not miss the ritual element of the doctors’ ‘rounds’. He will almost certainly overlook the intrinsic link that exists between this ritual, clinical organisation, clinical power and clinical knowledge. A knowledge which on the one hand depends on a ritual, organisation and power, and on the other expresses and produces them. The ritual, that of the morning ward rounds, which together with the masks of the ward, from that of the doctors and nurses to that of the patients, all with well-characterised and defined roles, takes us back to the origins of the Italian theatre, as described by Paolo Toschi in his book Origini del Teatro Italiano, whereby “All the dramatic forms from which our theatre develops recognise their first and unitary origin in ritual”.
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Sympathy Communication between patient and doctor in the ward is very delicate. The doctor informs the patient of the diagnosis, and therefore the type of therapy and the prognosis. It is now standard practice for the patient to have an active, i.e. conscious, attitude in the therapeutic decision-making process. The active participation of the patient, which presupposes awareness of his or her state of health, is one of the cornerstones of 4P medicine, which stands for personalised, preventive, predictive and participatory medicine. Information is aimed at obtaining the patient’s consent to a particular procedure that the doctor considers most effective in treating the disease, as defined by the informative consensus. At the same time, this information is addressed to a person who has his own experience, culture and social status, as well as own ability to tolerate pain and suffering. Theatre is based on the dialectic confrontation between the parties. But one wonders what a relationship between different minds can be based on, minds which, in the case of the doctor/patient relationship, start from a state of dependence upon one another. On the one hand the patient, who can also be defined as the observed, on the other, the doctor, who is the observer in this relationship. Giovanni Verga, in Fantasticheria, which is part of the 1880 collection Vita dei campi, raises an epistemological problem concerning the observer. In this case, it is about the narrator and how he should describe and represent facts and events in the key that was called verist and that is part of the great and complex narrative and artistic current that in the second half of the nineteenth century in Europe was called realism. The story begins with a train journey Giovanni Verga takes in Sicily along the coast between Messina and Catania. While the train is passing by the sea near Aci-Trezza, Verga, in conversation with a person, writes what is considered a manifesto of the role of the observer in the realism of veristic literature. “Have you ever, after an autumn rainfall, scattered an army of ants, when you were inattentively writing the name of your most recent dancing partner on the sand of the garden path? Some of those poor tiny creatures were probably impaled on the ferrule of your umbrella, writhing in agony; but all the rest, after five minutes of panicky scurrying to and from, were probably clinging desperately to their little brown hill again. I’m sure you wouldn’t go back to it, and neither would I. But to be able to understand that kind of obstinacy, which is heroic in some ways, we must imagine ourselves just as diminutive as they, our entire horizons enclosed between two sods of turf; we must use a microscope to observe the small causes that makes small hearts beat. Do you want to put your eyes on this lens? You who look at life from the other end of the telescope? You’ll find the spectacle strange, and thus you may be amused by it”. That observer, in this case the writer, must therefore be like an ant, must live and move as if he were an ant, because, by entering into the ant’s point of view, he can describe his movements as if he were observing himself. If we were to push this into a clinical context, it seems that Verga wants to suggest that the observer, the doctor, imagining himself to be what he is observing, must enter into the context of the observation, the clinical case, the patient’s illness, the sick patient. Is it possible to do this? And if it is possible, on what terms can it be done? Can we
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become ants? Can we enter the head of the ants, of the patient, reason and see things from their point of view? We can do it with imagination. One can imagine being what one is not, for example, being in the place of the patient, even if one cannot actually do it. There is an irreducibility between the doctor and the patient, which can be circumvented with imagination, but not eliminated. What can we do? Verga’s answer is to a question that many philosophers had asked before him. For example, David Hume, wondered why people who identify themselves with the rich and powerful, had theorised about sympathy, ‘which makes us share in the satisfaction of anyone who approaches us’. Men, Hume argued, put themselves in their place when they see the goods and objects of the rich and powerful, and in doing so, take pleasure in imagining themselves rich and powerful. This process of identification is not determined by the expectation of some economic advantage or utility, nor does it imply the presence of the other, i.e. the rich and powerful. It is not empathy, it is not hearts beating together. Sympathy is not a feeling of being together. It means that the person imagines himself to be the other, puts himself in the other’s shoes, and feels feelings and emotions as if he were the other. David Hume talked about this in the ‘Treatise of Human Nature’ of 1739, in a chapter entitled, Of our esteem for the rich and powerful. Hume was a man of great irony, he was, so to speak, neither a cheerful, nor a hypocrite, nor a man of good feelings. If we imagine that we are like another, even if this other is absent, if we imagine that we possess the same objects as the other, we feel pleasure and thus identify with him. The process of emotional identification is presented in an apparently simple way. We are faced with an extremely interesting theory of power, based on cognitive and psychological elements. Identification with the rich and powerful functions through the theory of sympathy, i.e. it functions as a process of identification with the other even in his absence. Adam Smith generalised the concept of sympathy by giving it a more direct cognitive connotation. “Sympathy, therefore, does not arise so much from the view of the passion, as from that of the situation which excites it. We sometimes feel for another, a passion of which he himself seems to be altogether incapable; because, when we put ourselves in his case, that passion arises in our breast from the imagination, though it does not in his from the reality. We blush for the impudence and rudeness of another, though he himself appears to have no sense of the impropriety of his own behaviour; because we cannot help feeling with what confusion we ourselves should be covered, had we behaved in so absurd a manner”. For Smith, as well as for Thomas Nagel, getting into the head of another, any kind of being, from the bat to the wasp or the man, means using imagination and imagining by drawing on the material of experience. Indeed, for Nagel and Hume, imagination and experience are closely linked. The relationship between imagination and experience is constructed in these terms: “Our own experience provides the basic material for our imagination, whose range is therefore limited”. Thus, standing in the place of another does not imply a feeling of togetherness, but a cognitive and emotional imaging of the other’s condition independently of the latter’s presence, cognition and emotions. This is why the concept of sympathy seems much more appropriate than that of empathy. It is not hearts warming together, because cooperation,
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communication, understanding of the other is always based on the fact that empathy, being in the other’s place, is a pretence in the original sense of the term, that is, a figuring out. It’s not actually being in his place, it’s a bit like what happens when we are spectators, when we watch the show, when we go to the theatre, when we go to the cinema, we identify ourselves and while we are doing it, we are perfectly aware that what we are seeing is not actually happening: it’s imagination. In the theatre, actors draw on their experiential background to enter and interpret the character, in accordance with the Stanislavsky’s method, whereby the actor works on himself to identify with the character. This has much to do both with Michel Foucaul’s distinction between power relations and states of domination and with the relationship between doctor and patient as a power relation that can turn into a state of domination. Relationships such as parents-children, teachers-pupils, doctors-patients are power relationships because they are based on an inevitable basic inequality that can and must be modified through learning and caring. When, however, such modifications do not occur, then we speak of states of domination, where the mechanisms of sympathy and identification crystallise and become functional to the status quo of the relationship.
Empathic Imagination It is likely that there is an epistemological issue in distinguishing sympathy and empathy within the doctor/patient relationship. They can be confused, but sympathy can be referred to a statement of emotional concern, and empathy reflects an emotional understanding. Definitely, in the medical context the term empathy is widely used and also studied in neuroscience. Empathy is a key word of humanistic medicine and can be viewed as an emotional experience between doctor, that is the observer, and the patient who is the subject under observation, that provides the observer to feel the patient’s emotional experience. According to a dictionary definition, empathy is “the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another . . . without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner”. However, rather than closed within a definition, empathy refers to a wide range of behaviour, including cognitive empathy, that is the ability to intentionally adopt or imagine another person’s perspective; facial empathy, that is the adoption of the posture o matching the neural response of someone, or psychological empathy, that is when the observer identifies and transiently experience emotion of the subject. Moreover, empathy includes also the capacity to project oneself into another situation. In the context of neuroscience, emotional empathy is distinguished from empathic compassion. The first one includes the activation of neural circuits of amygdala, insula or somatosensory cortex, and refers to feeling emotions towards someone. The second one consists in the activation of neural circuits of the periaqueductal gray, hypothalamus, striatum and ventromedial prefrontal cortex, and is characterized by feelings of warmth, concern, and care for the
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other, as well as a strong motivation to improve someone’s well-being. In general, empathy has a positive clinical effect, considering the reduction in pain perception or the severity of symptoms and the duration, or the improvement in therapeutic acceptance and adherence and patient’s wellbeing. We could say that empathy has a key role in taking care of patients as a person more than curing the disease. Actually, empathy falls within the practice of humanistic medicine. The question is whether empathy is a personal attitude or can be taught. Probably the truth lies in the middle. However, a student in medicine can learn how to become more empathic in relation to patients and in this context, laboratories based on acting performance studies have been developed and proposed. Actually, the concept of empathetic imagination, that is to think with the other by thinking as the other, that is thinking as if one is the other, fully matches with theatrical performance. Interestingly, empathetic imagination harks back to Hume, Smith, and Nagel for whom standing in the place of another does not imply a feeling of togetherness, but a cognitive and emotional imaging of the other’s condition, independent of the other’s presence, cognition, and emotions. Thus, sympathy and empathy, although with a few of nuance, seem to be overlapped. Acting performance provides the doctors with adapting their behaviour according to thoughts, feelings and emotions of patients through surface acting, that is acting without emotions, or a deep acting, that is emotionally honest acting. Doctors can, thus, modulate several aspects that are covered by the empathic process including non-cognitive processes, motor mimicry, or simple cognition (direct associations or conditioning), or advanced cognition (language association, elaborated cognitive networks, cognitive or affective role taking). Going back to the concept of ward masks, that of the doctor or patient or nurse, they play their well- defined role with their symbolic costumes: the doctor’s white coat, or nurse’s green coverall, or patient’s pyjamas, the first scene of the first act of the ward show are the morning rounds.
Bibliography 1. Iacono AM. The bourgeois and the savage. New York: Palgrave Macmillan; 2020. 2. Iacono AM. Autonomia, potere, minorità. Milano: Feltrinelli; 2000. 3. Verga G. Sicilian stories. Mineola, NY: Dover; 2022. p. 45–6. 4. Toschi P. Le origini del teatro italiano. Universale Bollati Boringhieri 5. Hume D. A treatise of human nature, Book II of the passions, vol. I. Oxford: Clarendon Press. p. 231. sgg 6. Smith A. The theory of moral sentiments. In: Macfie AL, Raphael DD, editors. The Glasgow edition of the works and correspondence of Adam Smith, vol. I. Oxford: Clarendon Press; 1976. p. 12. Th. Nagel, What is it like to be a Bat? In “The Philosophical review”, vol. 83, no 4 (Oct. 1974), p 439. 7. Stanislavsky K. The actor: work on oneself. The creative process of embodiment. New York: Routledge; 2008.
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8. Hirsch EM. The role of empathy in medicine: a medical student’s perspective. Virtual Mentor. 2007;9:423–7. 9. Batson CD. These things called empathy: eight related but distinct phenomena. In: Decety J, Ickes W, editors. The social neuroscience of empathy. Cambridge, MA: MIT Press; 2009. p. 3–15. 10. Decety J. Empathy in medicine: what it is, and how much we really need it. Am J Med. 2020;133:561–6.
Chapter 6
Between the Doctor and the Patient: The Role of the Unconscious in the Relationship Graziella Orrù, Ciro Conversano, and Angelo Gemignani
“Medicine, for him, was never just diagnosing a disease, but had to be seen and understood in the context of patients’ lives, the particularities of their personalities, their feelings, their reactions.” Oliver Sacks
Introduction The quality of the relationship between the doctor and the patient has developed significant changes in the last decades. Historically, from the1950s to 1970s [1], the nature of the doctor-patient relationship was preponderantly based upon an unbalanced interaction between the person seeking help (patient) and the professional (physician) providing indications, which were rigorously followed by the patient [2]. The aforementioned approach is also known by the terms “paternalistic model” or “paternalistic model of practice”, which was completely dominated by the doctor-centred interaction, where the patient’s autonomy and ability to make decisions was almost non-existent; in fact, the predominant medical practice, decades ago, was based on the physician’s appraisal of the patient’s medical conditions. On the contrary, the modern medical practice of the recent decades [3] has evolved from paternalism to individualism, encouraging a greater patient’s autonomy and the degree of self-determination, by supporting the development of the patients’ responsibility in managing their health [3]. G. Orrù · C. Conversano · A. Gemignani (*) Department of Surgical, Medical, Molecular and Critical Area Pathology, University of Pisa, Pisa, Italy Azienda Ospedaliera Universitaria Pisana (AOUP), Unità Operativa di Psicologia Clinica, Ospedale Santa Chiara, Pisa, Italy e-mail: [email protected]; [email protected]; [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Pingitore, A. M. Iacono (eds.), The Patient as a Person, New Paradigms in Healthcare, https://doi.org/10.1007/978-3-031-23852-9_6
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In this context, the communication between the doctor and the patient has become a central clinical function, where the information exchanged is the dominant communication model of the last few decades. This undoubtedly contributes to an increased comprehension of medical information by providing a major degree of engagement, awareness, and empowerment of the individual, which is involved in the decision-making process. At the same time, the communication model along with specific interpersonal skills, may promote a good interpersonal relationship and the creation of inter-institutional networks and partnerships between health and non-health organizations, creating more effective initiatives and interventions directed to the general and clinical population [4, 5] with the ultimate goal of achieving the best outcome and an effective delivery of health care. These considerations are particularly relevant considering that “most complaints by the public about physicians deal not with clinical competency problems, but with communication problems, and the majority of malpractice allegations arise from communication errors” as reported by Simpson et al. [6] in the “Doctor-patient communication: Toronto Consensus Statement”, notions based on Shapiro et al.’ [7] survey which assessed the impact of malpractice litigation on the doctor-patient relationship. In what follows, we begin by providing a brief overview of the main interpersonal communication skills and contexts where the professional relationship between doctor and patient takes place. Furthermore, for a better understanding of the doctor-patient interaction, physician’s utility functions [8] and possible implications, we will present the main theoretical models of the doctor-patient relationship and psychological processes implicated. The rest of the chapter will focus on social cognition, in particular the Theory of Mind and empathy, which highlights the human disposition to mentalize and the ability to attribute mental states to oneself and to others, which is essential in all stages of the care processes before concluding with the presentation of the brain areas activated and implicated in response to the patients’ needs and possible future directions.
I nterpersonal Communication Skills and Relationship Contexts Many patients report negative feelings concerning their physicians, which are often rushed and somehow disconnected during the medical consultation. From this perspective, interpersonal communication skills are essential and should be used by health-care professionals competently and adequately, while maintaining a constant focus on the patient, which is placed at the centre of the relationship [4, 5]. Currently, the doctor-patient relationship aimed at developing a “complementary” type of relationship, which respects the diversity of roles while avoiding the creation of an asymmetrical relationship, rather than creating a simple discussion “amongst peers” [9]. On the one hand, it is a prerogative of the doctor to carefully listen to the patient’s report and to grasp his/her point of view on a specific health matter, without any form of judgments or prejudices and on the other hand, the
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professional must propose scientific, valid and updated information in an understandable and reasoned manner. Ideally, the information provided by doctor should be integrated into the person’s cognitive and emotional frame of reference, as well as into his/her life context; additionally, it may take on a personal meaning and possibly be used by the patient to address fears, doubts, contain anxiety, facilitating decision-making processes and promoting functional adaptation. From this perspective, a good quality of doctor-patient communication and relationship may have “the potential to help regulate patients’ emotions, facilitate comprehension of medical information, and allow for better identification of patients’ needs, perceptions and expectations” [1]. A profound motivation and a sincere willingness to establish a therapeutic relationship should be a fundamental prerequisite not only for professionals which deal with patients with mental health issues such as psychologists and psychiatrists but also physicians and other health-care workers, in order to establish a relationship based on trust, collaboration, acceptance and empathy. A good strategy to improve the relationship between doctor and patient is based on different communication skills including style, content, and the ability to listen. For example, empathic and attentive listening are some examples of skilful communication. Empathic listening is the ability to pay attention to the content of what the person is reporting and towards the experience underlying his/her story, identified through the tone and timbre of the voice, as well as through the pauses and the speed of speech [10]. The “emphatic communication style” is defined by Platt and Keller [11] as “(...) a cognitive skill, and view it as a learned intellectual process that requires understanding of feelings.” In particular, this style uses and thinks about his own current sensory observations to come to an understanding of the patient’s feelings [11–14]. So, it is a specific communication approach aimed at providing to the listener with of being heard, welcomed and understood without prejudice; it proves to be helpful for the person, to feel more confident towards the physician as allowing the individual to freely express him/herself; at the same time, to build an effective relationship, the operator cannot help but to implement some control strategies (that include judgmental, managerial, paternalistic, interpretative, and persuasive attitudes) that, however, may undermine the relational process. Putting together a welcoming and positive attitude, within a relaxed environment, and the use of a clear and understandable language that pays attention to the issues that the person considers relevant, will facilitate the manifestation of doubts, concerns, fears and represent an opportunity to get to identify the real problem [14]. Undoubtedly, other pivotal interpersonal skills, interconnected to the previous mentioned notions, are the so-called “active listening” and the ability to understand verbal, paraverbal and non-verbal communication [9, 15, 16]. The term active listening was coined in 1957 by Carl Rogers and defined as “another strategy to increase empathy” [15]. First, the healthcare professional should know how to properly welcome the person and introduce himself to the patient. Active listening is essential to initiate the interaction between doctor and patient and to promote the creation of a positive enviroment. The first words spoken (verbal communication), the vocal tone and the timbre (paraverbal communication)
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become essential to create a welcoming environment that allows the person to feel comfortable and to disclose his/her request(s). More specifically, verbal communication is the actual content of the communication (that is, what the words that are being literally said), while paraverbal and non-verbal communications represent what is implied on the quality of the relationship and on the modalities of communication that is occurring. The paraverbal and non-verbal predominate over the verbal and may eventually provide up to 50–70% of the actual message. In fact, the same content can take on different meanings depending on the way in which it is conveyed [9, 17, 18]. The modalities of paraverbal communication are defined by vocalizations, volume, tone and timbre of the voice, rhythm, sighs and silences. At the same time, non-verbal communication is conveyed by gaze, facial expression, gestures, body movements, posture, body contact, spatial behaviour, and external appearance [9]. Paraverbal and non-verbal communications remain the principal means of expressing and communicating emotions (joy, anger, fear, sadness, disgust, contempt, interest, surprise, tenderness, shame, guilt). It is essential for the healthcare operator to pay attention to his interlocutor’s verbal communication (the contents) and to ways in which it is expressed through paraverbal and non-verbal, while also maintaining awareness of his/her own style of communicating [9]. From this perspective, in the contest of the doctor-patient relationship, the physician's interpersonal skills largely determine the patient’s satisfaction/dissatisfaction, compliance/non-adherence influencing health outcomes. If discrepancies emerge between the expressed contents, the paraverbal modality and non-verbal behaviour, the effectiveness of communication may significantly decrease or create misunderstandings among the interlocutors [19, 20].
Models of Doctor-Patient Relationship Emanuel and Emanuel [21], in their special communication, published on JAMA, entitled “Four Models of the Physician-Patient Relationship”, outlined four main models of doctor-patient relationship focusing on four specific domains: (1) goals of the doctor-patient relationship and interaction; (2) doctor’s obligations; (3) patient’s values; and (4) patient’s autonomy. Based on the aforementioned areas, the approaches identified by the authors were the following: (1) the paternalistic model; (2) the informative model; (3) the interpretative model; (4) the deliberative model. As mentioned earlier in the chapter, the paternalistic model, also known by the terms “parental” or “priestly” approach [22, 23], is a doctor-centred approach which presumes that the doctor employs his medical knowledge to determine which interventions or treatments are needed to reinstate the patient’s health, reflecting the individual’s best interest; according to this model, the relationship between doctor- patient is asymmetrical and significantly characterised by the passivity of the patient. The definition of the model, predominantly doctor-centred (or physician- focused model), has been widely shared by several contributions within the framework of the philosophy of medicine (i.e., [24, 25]).
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The second model, the informative model, assumes that the doctor possesses all technical expertise and—given his institutional role—is obligated to provide all the relevant information to the patient such as specific characteristics of the disease, diagnostic tools available, possible medical interventions but also the risks and benefits associated with the interventions prospected. As stated by Emanuel and Emanuel [21], this model highlights a precise clear distinction between facts and values: “the patient’s values are well defined and known; what the patient lacks is facts. It is the physician’s obligation to provide all the available facts”. The third approach, the interpretative model, suggests that the doctor might act as a counsellor; in this context, the doctor helps the patient to interpret possible goals and values. Regarding the latter model (deliberative model), the conception of the doctor’s role is comparable to a teacher or a friend. According to the model, the interaction between the parties is characterized by dialogue and aims at supporting the patient in making decisions on the best health-related values. Amongst additional approaches, it is noteworthy to mention the biopsychosocial model proposed and developed by Engel [26] in the 80’, based on the multidimensional conception of health; the model places the unhealthy individual at the centre of a wider system, which is influenced by multiple variables. In order to understand the disease, the physician must direct the attention not only to the organs and functions, but also towards the psychological, social, family dimensions of the patient, interacting with each other, which are able to influence the evolution of the disease. The main assumption of the biopsychosocial model is that the patient is “the expert of himself”, for this reason it is necessary to involve the patient as an active part of his own diagnosis process and, consequently, treatment. The bio-psychosocial model is opposed to the biomedical model [27–29], according to which the disease is ascribable to biological variables that the doctor must identify and treat with targeted therapeutic interventions. Currently, the biomedical model is still present in some areas of the healthcare system, particularly where objective biological evidence is required (i.e., blood tests, ultrasound, MRI, etc.) while the biopsychosocial model is mainly used in terminal care contexts, palliative care, retirement homes, etc. That is, in all those contexts in which the person taking charge of the person does not focus solely and exclusively on the biological side but needs to be integrated with the psychological and relational structure of the individual. The aforementioned biopsychosocial model, more than any other, requires a global attention towards the individual and the presence of a multitude of psychological aspects interacting with one another in conscious or unconscious ways. Nevertheless, every relationship model is susceptible to the effect of the psychological factors involved which inevitably come into play in the process between physician and patient [30]. For instance, in different clinical settings, the patients can feel anxious, vulnerable, alone, and fearful; if we think of a disclosure of a cancer diagnosis, the patient can experience feelings of losing control, anxiety, depression, uncertainty, desperation, and high level of distress. Given these emotions, patients may be unable to retain important information regarding their treatment when speaking with their care team [31]. In other clinical settings, the patient can perceive
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anxiety and dissatisfaction to uncertainty or the lack of explanation and/or feedbacks from the doctor; it is not unusual for the physician to misperceive the amount and type of information the patient needs. Similarly, often the patient misperceived what the doctor says, because of the language adopted by doctors which frequently employ jargon/technical terms leading to the lack of shared meanings [6, 32, 33]. From this perspective, effective communication between doctor and patient is a central clinical function. In this regard, Epstein and Street [34] have proposed a specific doctor-patient communication model, in which they indicate six functions within the medical consultation and beyond it, which seem to predict treatment outcomes. The model envisaged to take into account what follows: (1) promotion of healing relationships; (2) exchange of information; (3) emotional responsiveness; (4) management of uncertainty; (5) decision-making processes; (6) promotion of patient’s self-management. These functions and underling mechanisms are independent but also interconnected between each other, thus they demand to be addressed via a unitary approach. The first step of Epstein and Street’s model is the establishment of the relationship between doctor and patient. The promotion of a healing relationship is theoretically based on mutual trust and requires the presence of communicative and interpersonal skills of the clinician; these skills enable the doctor to collect information in order to improve diagnosis accuracy, provide therapeutic instructions and determine the best treatment specifically tailored for the patient. As discussed earlier in the chapter, adequate communication skills and effective communication techniques are extremely helpful. However, they are not sufficient to guarantee a successful doctor-patient relationship. In fact, discussing about perceptions and feelings about healthcare issues, treatment goals and potential effects or consequences on the patient’s psychosocial level is also crucial. Patients’ interviews have also shown that they appreciated attitudes of concern, trust, continuity in care and being recognized as individuals [35, 36]. In the doctor-patient relationship, trust is a mutual dimension: the patient relies on the doctor’s care and on the other hand, the clinician also needs to have faith in the patient. This latter element appears to have a positive association with more positive therapeutic outcomes [34]; from the interaction between the doctor and the patient emerges a “relationship”, which is defined as the perception of a connection based on mutual respect, acceptance, and empathy. Both parties are mutually committed in the relationship, each one carrying interest for the other and with a shared expression of interests and actions [37]. This mutual commitment contributes to the establishment of a deeper and satisfying relationship. The subjects involved need to recognize their roles: the definition of roles allows the contextualization of expectations and marks the boundary between the actors. If the roles are not well defined, it is necessary to implement a new definition of them. This is made possible by the definition of rules that support the interaction itself [34]. This relationship between patient and doctor, as any other relationship, is expressed through different communicative acts: verbal (language), non-verbal (facial expressions, proxemics) and paraverbal (tone of voice) communication [37]. The knowledge of communication techniques, as already mentioned earlier, allows
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the clinician to define and set boundaries, emphasize roles and, at the same time, get the patient involved and engaged within the treatment process. Patients, in fact, desire to be engaged in the relationship and be informed of all treatment options, to be listened without hesitation and be able to freely express their needs and concerns [38]. Patient involvement can be enhanced by the physician through the development of a partnership, encouragement, the definition of a shared agenda, active listening, and the adoption of techniques to ensure a correct patient understanding. The alignment of expectations between patient and doctor increases satisfaction and adherence to treatment [39]. The second step of this model is the information exchange. Dedicating a space to provide information is an essential step in order to help the patient acquiring the knowledge about their own health status (diagnosis, treatment, prognosis and related psychosocial aspects). The patient is informed both in his cognitive functions (attention, learning, memory) and in his emotional sphere; the exchange of information aims at activating and engaging the patient in the process of knowing his condition and, at the same time, managing both thoughts and emotions, to increase his ability to cope, empowering his self-efficacy [40, 41]. The third function is the emotional responsiveness. It is defined as the processes through which the physician collects relevant information, exposing the patient to different emotions such as sadness, fear, anger, uncertainty but also anxiety and depression. These emotional states occur dynamically within the relationship; indeed, they may suddenly change and oscillate in different polarities, without notice. The response to emotions and the containment exercised by the doctor, through legitimation, understanding and empathy, is essential for the outcome of the treatment [42, 43]. The doctor can answer using questions focusing on the patient’s emotional states, to increase the understanding of the other’s experience. The absence of responses to emotions seems to reduce compliance in treatment [44]. An additional function of the model is the management of uncertainty: uncertainty, in this context, is defined as the state that often accompanies the state of illness. As stated by Dhawale et al. [45], uncertainty has several meanings, the following: (1) “lack of familiarity with the necessary information”; (2) “unavailability of relevant information”; (3) “inability to assess the impact of patient or disease characteristics on outcome with one versus another treatment strategy”; (4) “poor understanding of patient preferences or priorities”. From this perspective, the recognition of uncertainty is a pivotal step for encouraging a clinical setting based on the patient-centred care approach [46]. It is not uncommon that the patient perceives aspects of the treatment or disease or recovery, as inconsistent, random, complex, and unpredictable. Uncertainty may negatively affect emotional states, inducing loss of control and causing a reduced quality of life. Uncertainty is also linked to the information exchange, indeed excessive or too little information may increase confusion and doubts, whereas sharing the experience of uncertainty in the relationship stimulates the use of functional coping strategies, allowing the doctor and the patient to work together, making shared decisions [34, 47]; as a result, such
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decisions may shape up to be qualitative better, as they are based on the patient’s perspective, values and motivations. The doctor cannot fail to take into consideration the client’s motivations, values and needs. Reaching a high-quality decision is not immediate nor obvious: doctors are often unaware of the patient’s value system and may have different beliefs about the concept of health, while patients are often unfamiliar with clinical language that hinders the decision-making process [48]. Shared decision-making appears to be the best strategy: the doctor provides information, and the patient welcomes it, the parties together evaluate the alternatives and make shared choices [49]. Finally, as the last function of the model proposed by Epstein and Street [34], the goal of the relationship process is to enable the self-management of the patient. The physician provides recommendations and shows sensitivity to support the self- management of care. Self-management education helps patients to identify issues and empowers them by providing strategies and techniques in order to set goals, make decisions and put in place appropriate and autonomous actions [50]. Within the doctor-patient partnership, each actor involved contributes with their own skills and shares responsibility to the problem-solving process [34, 51, 52]. The Epstein and Street’s model [34] includes a series of essential psychological constructs and mechanisms as well: communication, cold and warm functions such as attention, memory, learning (cold functions) and organization of actions in sequence, attentional flexibility and metacognition (warm functions), emotional regulation and social cognition [53]; as indicated by Frith and Frith [54], social cognition represents a set of processes that allow individuals of the same species to interact with each other; generally, among humans, social cognition refers to any cognitive process, including unconscious mechanism, that involves other people [55]. The two main constructs pertaining to this field are the so-called “Theory of Mind” and “Empathy”.
The Role of Unconscious in the Doctor-Patient Relationship In the context of medical consultation, patients share with their own physician feelings, concerns, worries, hopes and uncertainties [56]; on some occasion, negative feelings can be expressed explicitly as concerns, also called as empathic opportunities [14], but often though, negative feelings or emotions related to stressful situations are revealed indirectly as cues (literature review: [57, 58]). Several investigations [59, 60], on the one hand, highlighted that, occasionally, doctors discourage (directly or indirectly) patients from disclosing aspects concerning their psychological state, preferring to dealing with the biomedical aspects of patients’ concerns; on the other hand, patients may feel able to disclose their worries and emotional distress when the doctor is the first to confront the patient in the discussion [61]. A crucial challenge encountered by physicians is the ability to grasp and concurrently respond to the patients’ concerns, facial expressions, negative emotions, or
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emotional distress and needs. In this specific clinical setting, the ability to attribute mental states to oneself and others, also known as theory of mind (ToM, [62, 63]) is particularly relevant, as well as the ability to identify and understand feelings, emotions, cognitions, and the behaviour of others (empathy). In what follows, we provide a brief overview of the ToM within the doctor-patient relationship framework, encompassing the involvement of the empathy and the brain areas involved in the response to the patients’ needs.
Social Cognition: Theory of Mind Human beings are social creatures, and their brain seems to have specialised through evolution to deal with social interactions; even though humans share many social behaviours with other animals, some aspects, such as self-awareness and the awareness of others, are thought to be characteristic of our species [55]. Individuals engage in several and heterogeneous social interactions to reach a variety of goals, including, amongst others, the acquisition of information, the ability to influence other’s behaviour, establishing and maintaining important relationships by sharing inner states, feelings and thoughts. Mental states, such as desires and beliefs, are abstract entities, thus they cannot be observed directly. Indeed, there is no simple correlation between mental states and behaviour, and it is crucial to pay an attentive listening on how people communicate their inner states, in order to make inferences about what is happening in their mind [64]. Furthermore, humans, as social animals, tend to interpret other people’s behaviour and respond accordingly, by implicitly reading, analysing, and decoding different signals [55]. In social communication, language is important but is not the only element that gives information about other’s intentions [54]. By observing facial expressions, body posture, movements and eyes direction, people can also perceive what others believe, feel, want, intend or need [65]. The human disposition to mentalize, implies the development of a ToM, which has been defined as the ability to attribute mental states to oneself and to others [66]; moreover, this ability allows people to make inferences about what others believe in each circumstance and to make prediction about their actions and behavioural responses [63]. The term ToM, originally proposed by primatologists to address the ability of chimpanzees to make inferences about the intentions of conspecifics, was later adopted by developmental psychologists to explain the acquisition of perspective taking in children and to understand social difficulties in autistic spectrum disorders [67]. Therefore, existing knowledge about ToM, also called “mindreading”, is mostly derived from developmental research. Precursors of ToM, like joint attention, social imitation, pretend play, the ability to understand goal-directed actions and the organization of behaviour in terms of desires, seem to be present at a very young age [66, 68–71]. The understanding of other people’s mental representations takes place approximately at the age of 4, when children become able to predict
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what an agent having a false belief will do [72] in the so-called “false belief task” [73]. Thus, ToM plays a pivotal role in social functioning and without it, people would not be able to understand and interpret the behaviour of their fellow humans [74]. Understanding behaviours, in terms of dispositions and intentions, is critical in order to make adequate decisions in different social circumstances [75]. In the context of doctor-patient relationship, having technical knowledge seems to be insufficient to satisfy the needs of the patients; advanced interpersonal skills are also fundamental to establish a strong interaction between the physician and the person he takes care of [76]. Important questions are “how do doctors accurately infer mental states of the patients?”, or in generic terms, regardless of profession, “how do humans accurately infer the mental states of others?”; in this regard, Byom and Mutlu [77] have highlighted the main components, first the knowledge of the shared context, second perception of the social cues and third interpretation of actions. From this perspective, the ToM is a pivotal theory because is situated in the context of the surrounding world [78], where the say of the patient is implicit, sometimes. During a medical consultation, doctors have to rapidly infer their patients’ emotions, thoughts and needs in order to respond appropriately; making appropriate responses in the conversation with patient, which also requires the integration of the perception of cues or clues (i.e., gaze clues, vocal emotion) derived from the patient and its context. Paying careful attention to people’s needs, beyond the treatment of medical symptoms, and recognizing and discriminating emotions and mental states is a key feature in a patient-centred care and ToM may offer a unique tool to understand the unconscious and the inner world of patients, and to respond accordingly. On the other hand, as humans we expect that both doctors and patients behave in line with their own aims and believes [79].
Social Cognition: Empathy As mentioned earlier, an additional fundamental psychological construct belonging to social cognition is empathy, traditionally defined as the human ability to identify and understand feelings, emotions, cognitions and others’ behaviour [80]. The term empathy was introduced by Edward Titchener in 1909 as a translation of the philosophical term Einfühlung (“feeling into”) used to indicate a kind of introspective and kinaesthetic reaction following the observation of objects or actions associated to human emotional states [81, 82]. Empathy is not something one needs to learn. Rather, the basic building blocks are hardwired in the brain and await development through interaction with others [83]. In the discourse surrounding this human ability, it is referred to as a “spectrum of phenomena” which includes concern for others, motivation to help, caregiving, emotional mirroring and a reduction of the separation between self and the other [80, 84]. From a psychological perspective, empathy is usually divided into
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affective and cognitive components; the first one, sometimes named “empathetic concern”, indicates the experience of sharing the emotional states of others [85]; the second refers to the ability to understand other people’s feelings and it is associated to concepts like “role taking”, “perspective taking” and the aforementioned “ToM” [86–88]. A third, recently conceptualized component, is the so-called “motor component” or “motor mimicry” related to the body response activated by the facial expressions of other individuals [82, 87]; this latter component can be associated with unconscious and automatic processes that allow a close connection among individuals [89]. Relating to possible unconscious processes, the psychoanalytical approach describes empathy as the constant ability to feel “softly” inside ourselves, what another person feels [90]. A conceptually related intrinsic phenomenon of therapeutic relationships is the countertransference; essentially defined as the reactions and feelings that a patient elicits in its therapist, reactivating past relational patterns [91]. Despite the similarity between empathy and countertransference definitions, a possible link with the unconscious is still unclear. Empathy, in therapeutic relationships, is a positive element for patients, physicians, and the therapeutic process itself, mainly due to increased cohesion, introspection and elaboration capabilities. In a true empathic relationship, the patient’s emotional states are recognised and validated, providing “a greater awareness, self-recognition, and mutual respect” [92]. From philosophy to recent developments in cognitive psychology, the concept of empathy has had a long and complicated history. However, nowadays there is still no universally accepted definition of empathy free of problematic methodological consequences, both for the clinical and the research settings [80, 87, 88]. One of the earliest systematizations of empathy was conceptualized by Batson [93], which pointed out eight different uses of the term: as “cognitive empathy” for the understanding of other’s internal states; as “motor mimicry” the mirroring of other’s postural behaviour; as “affective empathy”, which includes autonomic activation; as “projection” to put oneself in another person’s life situations; as “perspective taking”; as “imaging” or representing what another person thinks or feels; as “empathic distress”; and finally as “empathetic concern” when facing the suffering of other individuals [93]. Recently, Guthridge and Giummarra [94] have found nine consistent conceptualizations of empathy: as a catalyst, as function, as process, as outcome, as affective state, as cognitive state, as involvement between self and the other, as motivation for behaviour, and as context. Thanks to these nine dimensions, the authors have formulated a final, distilled, definition of what empathy really means “[…] the ability to experience affective and cognitive states of another person, while maintaining a distinct self, in order to understand the other” [94]. Regardless of approach and definition, empathy has a crucial role in health care relationships, not only for patients but also for health care workers, psychologists, mental-health workers, physicians, nurses and social workers and it also represents a key factor in fostering positive treatment outcomes [95–97]. Empathy in care relationships activates a “continuum of processes” that uses both verbal and nonverbal communication to understand, respond to, and support patients [98–100]. Hall et al. [95] have observed three typical attitudes among health care
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relationships: “Conscientious and Reassuring”, “Relationship Oriented” and “Emotionally Involved”. These types map well on a continuum of the physician’s engagement with the patients, starting from an emphasis on performance, passing through interpersonal engagement, and ending into a more prominent role of the physician’s emotional state. Taken together these factors appear to describe the attributes necessary for a health care professional to be considered empathetic [95]. At a phenomenological level, empathy, also in the relationship between doctor and patient, denotes, a sense of similarity between the feelings one experiences (i.e., doctor) and those expressed by others (i.e., patients); despite it, as stated by Dacety and Jackson (2013) [101] in the Functional Architecture of Human Empathy, “this sharing of the feelings of another person does not necessarily imply that one will act or even feel impelled to act in a supportive or sympathetic way”. Some authors speculate that the sense of “self-other” is the real engine responsible helping the other, rather than empathy [102]. The term empathy is often used interchangeably with sympathy and compassion, also known as “empathetic concern”. In the field of health care, these terms point to different qualitative aspects of behaviour: sympathy refers to pity for others suffering, while compassion is an emotional state associated with preoccupation and motivation to help who is suffering [84, 97, 103]. While sympathy and compassion represent other-oriented responses to suffering, empathy may represent a self- oriented response to another person suffering [104]. Compassion seems to be one of the most important elements in health care relationships and it is associated with gratification in helping someone else [105]. This coupling fosters many successful interactions between physician and patient [103]. However, there is some debates about the supposed potential health outcomes of using an empathetic or compassionate approach with health care workers [97]. On one hand, an empathic relationship seems to constitute a protective factor reducing distress and burnout in terms of an increased professional satisfaction trough a more meaningful and enriching clinical practice and by constituting a preventive factor for some symptoms of burnout such as depersonalization and emotional exhaustion [106, 107]; on the other hand, a passionate motivation in helping patients forces the professional to face pain and frustration that can ultimately result in burnout [84, 103]. In the subsequent paragraph will be discussed the neural correlates underlying all the processes described above that are involved in health care relationships.
rain Areas Involved in the Response to the Needs B of the Patient Medical communication may modulate behaviour, where different processes (cognitive and emotional) appear to be strongly associated with psychophysiological reactions, called physiological correlates. There is currently a growing body of
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research (i.e., [108–111]) focussing on the psychophysiological correlates during medical consultations that have tried to answer the following question: What happens in the brain during a social interaction? The results of different studies have highlighted (1) physiological responses (i.e., salivary cortisol and cardiovascular arousal) associated with the medical communication (for example delivering bad news) [112]; (2) high stress responses associated with the doctor’s inexperience or fatigue [113]; (3) sympathetic electrodermal activity associated with medical interview [111]; (4) higher electrodermal activation when it is reported an high degree empathy in the interaction [114]. Furthermore, the interaction between patient and physician is mediated by the activity of multiple, organized, brain areas and networks. Neuroimaging research in the last couple of decades has been pivotal in the discovery and localization of brain areas which undergo an activation in response to socially relevant stimuli, or whose activity is heavily correlated with constructs and models belonging to social cognition. Thus, helping the rise of a relatively novel field of research called Social Neurosciences [115]. The main neuroimaging tool employed on human subjects in this field is the functional Magnetic Resonance Imaging (fMRI): a method which ingenuously utilizes the magnetic properties of cerebral blood flow to detect variation in cerebral activity while scanning the brain. As we have seen before, the patient-doctor relationship has been observed through the lenses of multiple models and it has been parsed in a multitude of processes and constructs, many of which have been thoroughly studied in experiments involving fMRI. The mental processes pertaining the ToM have been correlated with the activity of a number of areas distributed on the neocortex, in particular the superior temporal sulcus (STS), the right temporo-parietal junction (rTPJ) and the medial prefrontal cortex (mPFC). The STS is involved, both in humans and primates, in social perception and the analysis of biological cues from other individuals, such as movement and gaze direction [116]. The rTPJ appears to be engaged during tasks which require the representation of other people’s beliefs [117]. The specificity of this activation for the ToM has been contested, since this area appears to be also involved in the reorienting of attention, a higher-order process that might be recruited during the execution of belief attribution tasks. A more recent study using high-definition fMRI demonstrates though that the two processes, belief attribution and attention reorienting, elicit an activation of distinct, but adjacent sub-regions of the TPJ [118]. The mPFC is usually engaged during false-belief tasks [117]. This area is also one of the major hubs of the default mode network (DMN), a large brain network which activates when a subject is not involved in an active task and is purported to be related to spontaneous thought, mind wandering and daydreaming [119]. Since there’s a large overlap between the activity of regions involved in ToM, DMN, spatial navigation, future projection, and autobiographical memory, it has been proposed that these systems form part of a larger, interconnected, “self-projection” core network of the brain [120]. Mounting experimental evidence also seems to support this hypothesis [121]. Of note, the mirror neuron system, comprised of specialized neurons that activate when an individual observes another one performing an action
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[122], also constitutes another brain system that has been implicated in the ToM in what has been called the “brain simulation” hypothesis of ToM [123]. However, the status of its involvement in the processes related to ToM remains controversial. Brain systems involved in empathy are essential in letting the physician attune to the feelings and the mental states perceived by the patient. Research in the field seems to point to a differentiation between two empathy systems: one for emotional empathy (evaluation of the mental state of others on an affective level) and one for cognitive empathy (the correct labelling and identification of the mental state of other individuals). Emotional empathy and emotional contagion seem modulated by the activity of areas such as the inferior frontal gyrus (IFG) and the Inferior parietal lobule (IPL); while areas like ventromedial prefrontal cortex (vmPFC), the temporo- parietal junction (TPJ) and the medial temporal lobe (mTL) appear to play a role in the cognitive empathy system [124], of note, there is an overlap between areas involved in the theory of mind and areas involved in empathic processes. In what has been named the “perception-action” conceptualization of empathy, all processes related to the understanding of the emotional status of others require a neuronal-level overlap with the same brain areas implicated in the processing of a first-hand experience of emotional states and feelings [125]. Indeed, observed pain in other individuals activates the same structures as actual perceived pain, such as the anterior insular cortex (AI) and the anterior medial cingulate cortex (aMCC) [126]. However, there is not a complete overlap between both kinds of perception, and distinct, dissociated, activation patterns exist for personal and vicarious pain [127]. The perception of pain in others appears to be modulated by different networks for different kinds of pain—physical or emotional. Physical pain seems to correlate with activity of AI and aMCC, while the perception of emotional pain in others seems to correlate with areas associated with ToM, in particular TPJ and mPFC [128]. Of relevance for the study of the relationship between patient and physician is the fact that expertise seems to regulate the perception of pain in others [129]. Physicians, compared with controls, have a non-significant activation of areas involved in the perception of pain in others (AI and aMCC). The perception-action mechanisms are not limited to conscious or voluntary processes, even autonomic brain responses can be perceived and mimicked, as an example: a study conducted by Harrison et al. [130] shows that the incidental perception of pupil size during the presentation of images of facial expression produces an activation of brain areas related to social cognition constructs and also an engagement of the brainstem pupillary control nuclei, demonstrating a completely autonomic, unconscious and involuntary emphatic response. As we discussed earlier in the chapter, the behaviour of a physician and the quality of its relationship and communicative approach with the patient significantly influences the brain activity of the latter. The capability of a physician to understand the patient can alter its affective status on a neural level: for example, an interesting study [131] shows that feeling understood activates brain areas previously associated with social reward and connection, such as the ventral striatum and the middle insula; on the other hand, feeling misunderstood activates the anterior insula, that, as we mentioned earlier, is related to the perception of pain. The physician’s influence is not merely dependent on the quality of its relationship and of its helping
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behaviour, but also on the kind of behaviour it enacts towards the patient. A recent Italian study [132] shows that receiving gratuitous help of a practical kind induces an activation in areas associated with the ToM, while receiving verbal appreciation activates the occipital cortex of the recipient. This highlights that the representation of different prosocial behaviours is encoded in different parts of the brain. The behaviour of the physician doesn’t alter only the affective status of the patient, but it also influences its cognitive and decision-making processes: through information exchange and advice a physician can increase the likelihood that the patient will pick a particular choice even on a neural level. A single exposure to the opinion of an expert has been found to be capable to influence later choices by enhancing the activity of brain areas related to semantic learning, like those located on the temporal cortex; and modulating the attitude of the subject through the activation of the caudate nucleus, a subcortical brain structure involved in reward processing [133]. The activity of the caudate nucleus has also been found to signal which choices are deemed to carry the best possible outcome. Interestingly, this same signal can be increased by exposing the subject to external advice. Following said advice correlates the caudate signal with the activity of the amygdala, suggesting that following an external advice may be intrinsically rewarding and emotionally significant [134]. Applied on medical communication setting and within the relationship between doctor and patient, taken collectively the implication of these findings could possibly suggest that “[…] by eliciting patients to express cues and concerns and through adequate responses the doctor might actually help the patients to a better regulation of emotional processing in the brain, by a downregulation of amygdala activation and relief of stress, confirmed also by the changes in electrodermal activation” [56].
Conclusions and Future Directions The essential elements in doctor-patient relationship, as noted above, are mainly represented by good communicative abilities, including active listening and understanding of verbal, paraverbal and nonverbal aspects [9, 135]. Therefore, what emerges from the evolution of the most frequently adopted models of doctor-patient interaction, is the centrality of the patient within the whole care process; patients should be considered as experts of their own psychophysical conditions; thus, their needs should be taken into account by professionals [136, 137]. According to these models, the strength of the doctor-patient bond is primarily determined by some psychological processes underlying the relationship, that influence the quality of the relationship itself and shape the outcome of the treatments; these processes include communication, learning, memory, attention, problem solving, decision making, planning, emotional aspects, social cognition, ToM and empathy [34, 37, 43, 49, 53]. Specifically, ToM and empathy, which are involved in understanding others’ mental states and suffering, are particularly relevant in the context of caregiving and promoting helpful behaviours [63, 84]. All conscious (or partially conscious) processes and mechanisms that maintain the doctor-patient relationship, appear to
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have neuroanatomical correlates, particularly in cortical and subcortical circuitry [116, 124, 126]. What has been described above is a synopsis of what are thought to be essential elements in effective doctor-patient relationships. Among the potential future directions, which have been partially introduced in the field of care, “4P Medicine” (where “P” stands for predictive, personalized, preventive and participative) proposes an integration of biological characteristics of the individual aimed at predicting disease trajectories and defining interventions by creating customized models to achieve the individual’s wellbeing [138]. The customized models include “Narrative Medicine”, a type of intervention based on a specific communicative competence, is one of the customized models that can be implemented in order to build a personalized treatment alongside the patient, increasing adherence to treatment, therapeutic compliance, empowerment, patient awareness, operator satisfaction, service efficiency and perception of the quality of life (QoL) [139–144]. In conclusion, relationships based on empathy, trust, a strong bond between healthcare workers and patients, acceptance, non-judgment, support, improvement in QoL, therapy outcomes, the quality of the therapeutic alliance, and general wellbeing; these reasons appear to highlight the importance of an empathy-centred education in health care workers [84, 96, 97].
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Chapter 7
The Medical Doing on the Person Ilaria Billeri, Silvia Dadà, and Francesco Giunta
The evolution of doing in medicine starts from afar. The medicine of the past was marked by a “paternalistic” approach: the doctor assumed the role of guardian of the patient and the patient had—necessarily—absolute trust in him, without participating in therapeutic decisions (patient). This model, which formed the backbone of medical ethics, has been in force in the Western world continuously for 25 centuries until good medicine questioned whether the decisions made ‘in science and conscience’ were justified by medical knowledge and oriented to the best interest of the sick person, not to his preferences. The responsibility of the doctor was expressed in the liberal profession, descending from a model with a religious value. The decline of paternalism is not limited to overcoming the concept of medicine as a profession, but increasingly involves the whole of society. Today’s phase of the evolution of medicine finds at its dawn a health offer that opens up scenarios of substantial treatment and healing and not just ways of accompanying and supporting the natural course of the disease. This opens up completely new and never before explored scenarios on procreation and the initial stages of life. The authority enjoyed by the doctor began to be tampered with by the situation that was being created by the introduction of new diagnostic tools, specialist examinations and instrumental investigations which, being essential for the construction of a diagnosis, diluted its centrality of care and reduced the decision making. The paternalism that sustained the doctor in the relationship with the patient was now being questioned. The doctor realized that his skills could not fully cover his patients’ requests for care. The patient, who was referred to a complex diagnostic
I. Billeri · S. Dadà · F. Giunta (*) Pisa University, Pisa, Italy e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Pingitore, A. M. Iacono (eds.), The Patient as a Person, New Paradigms in Healthcare, https://doi.org/10.1007/978-3-031-23852-9_7
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process, became aware of the fact that his doctor needed other figures to reach the cure. The centrality of the doctor and his authority lost their paternalistic values and began to be the subject of comparisons. Paternalism is followed by a collective acceptance of the patient and it is in this epochal passage that the beginning of the moral debate is inserted. Morality has new matter to contend with for the rampant medical innovations. Topics such as blood donation, abortion, artificial insemination, organ donation, withdrawal from treatment and the definition of death are now ethical matters. Over the span of 20 years (1970–1990), all of this comes out of personal discretion and is addressed as a social debate, but the passage from the treatment of illness to the sick person is not simple and fast. Currently the safety of a good health system is based on the standardized procedures that are produced by Evidence-based Medicine (EBM) techniques. The EBM system provides for the comparison between the patient’s clinical evidence and a diagnostic and therapeutic corpus built from the experience of thousands of colleagues who have dealt with the same disease. This confrontation flattens the sick man to his illness and does not allow us to analyze his responses as a single and unique man. Evidence-based medicine is perfect for identifying cohorts of patients assimilated by pathology, but it can do little for the person affected by that pathology. Similarly, the payment system for health services is based on the care burden of a pathology. This procedural modality has reduced the discretion of the clinician: it has produced demotivation in playing a technical role, often forced within non-dilatable spaces and times and sometimes capable of depersonalizing the medical act. That today a pathology is being treated, not the patient, not unlike what in the second half of the nineteenth century, driven by the need for greater knowledge of some organ pathologies, the first clinics for sense organs were established (Vienna), large observation and treatment departments for psychiatric diseases in the French and German area and in Italy the structures for physical and mental disabilities and sanatoriums for tuberculosis. The modern treatment process has experienced alternating phases, but in the Italian reality this modern treatment process began with the socialization of health, which still sees in the Napoleonic decrees (1802) the creation of the institution of the doctor distributed in the territory, responsible both for health aspects for the poor, and for the registration of the health trend of the population, an institution that will then take the form of the conduct. This institution, if usefully strengthened, culturally supported and expressly valued, could perhaps have become an excellent starting point for the humanization of medicine that we are still looking for. Today it seems that the time has come for the decision-making and communication processes originating from these modalities of care behavior to be deeply addressed to the new centrality of the person: the disease produces clinical situations on the person who is affected in a way that is not necessarily univocal, as the treatment of the disease would foresee. The person responds to treatment in an individual way with resentments in the different organs and systems that are predictably different, just as the psychological response to the disease will differ from
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person to person. EBM cannot leave the decision-making and economic areas that the disease identifies, but the sick person is something different and must become the central interest of the treatment methods. The patient as a person is a disruptive concept in today’s medicine. The current health system, designed from a corporate perspective, where economic sustainability remains the first objective, offers operating methods that underlie the concept of profitability of the disease treatment process. It follows that the focus is the disease, not the patient. In this system the patient is a “user”. This definition points out the distance from a correct application of the patient-person paradigm. This collective taking charge still appears to be an unfinished step. In fact, while it seems to be possible to affirm that the man-doctor is now ready to introduce a paradigm of dignity to the person that responds to principles of dignity, autonomy and freedom that are really understood and applied, the “health system” is not equally aligned. Every day new problems are faced, posed by clinical dilemmas proposed by the diffusion of communication and techniques. The examples are manifold and cover all stages of life from conception to death. Entirely new topics emerge in the diagnostic field where imaging finds automatic solutions resulting from the introduction of diagnostic processes governed by automatic artificial intelligence (AI) systems. In the physician’s decision-making, this additional information will have to be added to the many other diagnostic investigations to arrive at the prescription of the treatment: a multitude of information that could reduce the synthetic capacity and weaken the central role of the doctor. If we look at the current situation of the doctor-patient relationship in the perspective of a future doctor-person relationship, we find ourselves faced with some situations that, due to their criticality, slow down the transition to a more appropriate relationship between doctor and patient-person. We are witnessing situations where it seems to be possible to see that medicine can change the person, that from the treatments there are people with reduced physical and/mental abilities, that from the treatment a different person could hesitate from before. For example, a prolonged intensive-therapy treatment frequently returns a man to work and relational skills are lower than in ones previous state of health: long- covid is one of these effects. Prolonged resuscitation treatment in the event of cardiac arrest, if it produces the recovery of autonomous cardiac function, is burdened by irreversible neurological damage, depending on the duration and effectiveness of the external support of the circulation. The restoration of vital functions, in these cases, turns out to be an ephemeral success: this reality has become a social question. In fact, to limit the risk of producing, due to the effects of resuscitation, greater permanent damage such as to substantially modify the neurological state of the subject, a criterion for limiting treatments has been introduced in the guidelines after a certain resuscitation time has elapsed. The manipulation of the last stages of life, the very concept of death and respect for the residual body do not go beyond bioethical considerations. The multiple
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potentials of biology to influence the process of cell and organism death are amply demonstrated by the issues that have opened up on the definition of death, the state of persistent vegetative life and forms of suicide. These multiple aspects are only the prerequisite for subsequent developments; just as it is evident that from the definition of death we pass to the definition of brain death: it is to this that we owe the development of transplantation, now widespread and accepted. But the surprises begin to spread: there is the first evidence concerning the possibility of the diffusion of DNA from the donor in the recipient, creating “chimera subjects”, like the case of Chris Long, a Nebraska sheriff, who 4 years after the bone marrow transplant presented a genetic profile close to that of the donor. The case is particularly delicate as even the genetic heritage expressed by his sperm is referable to the donor … There is currently no knowledge of the dimensions of these unexpected phenomena, nor of the intrinsic value in the person of the recipient, but we will ask ourselves what unity of the person exists in “chimera” cases of this type. This too will become a subject of bioethical contention. Analyzing what derives from the patient’s total decision-making autonomy in the context of the treatment choices on himself, we start from the axiom that the knowledge of his own state of health makes the person capable of judging and making choices about his future. This seems a fact that is no longer debatable, but it is not so easy to certify the ability to make free and informed decisions about the freedom of judgment of a chronically and seriously ill patient. The loss of his state of health, the knowledge of the failure of treatment and suffering are conditioning factors, especially in the perspective of a long and painful existence. Paradoxically, the successes of oncology, with the prolongation of a condition of suspension of the aggressiveness of the disease, increase survival, but, after an initial phase of transitory improvement in general conditions, they produce negative effects on the patient’s income. This state of prostration changes the patient’s psychological state, often reducing the possibility of verifying his ability to make free and informed decisions. In this scenario, the “agreed” choices (that is, not completely autonomous, but made aware and debated together with a nucleus of dedicated professionals who allow the person the best awareness of his state) could be considered a useful and perhaps indispensable psychological defense for the best reasoned and weighted choice of the subject. In this regard, what is contained in the Advance Processing Provisions (DAT) represents an excellent guideline model. In fact, the DAT, with the provisions dictated then for now, offer a good starting point for a conscious handling of the problem by a treating team. In the event that the patient is in a state of awareness, the team will be able to verify the current will of the person in the light of his conditions. The DATs are a behavioral address for health professionals, not an obligation and this is profoundly correct, in consideration of its diachronic and dystopian expression of will. A few words deserve a big topic of modern society: suicide.
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Personal freedom could also be evoked in some forms of suicide. A certain strand of medical knowledge categorizes suicide as “suicidal behavior disorder” (SBD) among the conditions included in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). It follows the offer of specific therapeutic schemes. It seems easy to object to such an automatic inclusion of suicide among mental illnesses: we may soon find ourselves faced with scenarios that now seem unlikely to us. The uncritical way that sometimes characterizes the establishment of protocols and guidelines may not exclude this possibility. The Italian legal system on the subject of assisted suicide is opening up new scenarios, where the will of the person finds an ever wider volume of application. In the sentence of the Constitutional Court 242-19 the space of unconstitutionality is enclosed with irreversible pathology, a source of intolerable physical or psychological suffering, life-sustaining treatments and finally the ability to make free and conscious decisions. All this is significant and absolutely acceptable, but there is no law that adequately encloses these spaces; in fact, it could be debated whether some specific pictures of diabetes, depression, neoplasia, psoriasis and anaphylactic syndromes such as Multiple Chemical Sensitivity Syndrome (MCSS) cannot fit within the spaces of unconstitutionality given by the sentence. The law serves for situations where there is no internal social control as it exists in institutional care facilities. In 2007, responding to a survey on end-of-life treatments, the Italian renunciates clearly indicated in respect of the person, in his or her dignity needs, the modalities of therapeutic withdrawal that are put in place. This respect for the person, for the meaning of life and care in alleviating suffering, in the consent of family members and in respect of the patient’s requests, constitutes solid ethical skill for resuscitators. Faced with the need to consider the patient as a person, it may be useful for us to dwell on the distinction between two ways of understanding medical practice, namely care and care. On the one hand, caring involves the patient in his totality, and interprets him as a person who has desires, needs, and who seeks a balance that goes beyond the organic elimination of the disease. This attitude appears in particular in ancient medicine, in which the absence of scientific knowledge and adequate diagnostic and therapeutic means made the doctor a figure who indicates to the patient the practices to lead a balanced life in accordance with his desires and needs. The practice of curing, on the other hand, almost exclusively preferred in modern and contemporary medicine, exploits techniques and scientific knowledge for the purpose of an effective intervention of healing and management of the hospital reality. If this development has certainly had the merit of overcoming the limits of individual knowledge, reconnecting it in a more direct and easy way with the entire scientific community, at the same time it has increased the distance between a purely technical role of the doctor and the practical one, in which the patient’s experience, his clinical history, his perception and experience with respect to his own state are fundamental.
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The difference between these two elements, to cure and to care, on the one hand has the merit of highlighting the specificities of each of the two concepts, on the other hand it favors a gap that risks revealing itself as irreconcilability. The goal, on the other hand, must be precisely to recover a unitary and articulated idea of “care”, which does not see the two elements as opposed or disconnected, but as two fundamental aspects for the good and health of the patient. It is therefore the disease itself, according to the gaze with which it is observed, to change its meaning. If, in the past, it was understood in an integrated way with respect to the patient’s life, in the modern era it assumes a character independent of the subject, in which the fact that the patient is its host does not constitute a decisive character. This is how current medicine becomes, as Eric Cassel [1] says, disease- centered, whereby the focus is placed not so much on the individual perception of the patient with respect to it (illness), but on the search for its causes and its objective and general dimension (disease): we are therefore witnessing not only an objectification of the patient, but of the doctor himself, which seems to be able to be replaced by an impersonal calculation that leads back to the state of health as the absence of the disease. Today, although the positivist and neopositivist heritage still makes its weight felt, nevertheless needs of a different character have also emerged in an increasingly evident way, expressed among others by the so-called holistic medicine, which refuses to consider the localization of the disease independently of the totality and balance with respect to the other vital aspects of the individual, proposing a unitary idea of man in his bodily and spiritual components [2]. In the 1940s of the last century Viktor von Weizsaecker, redesigning the concept of medical anthropology, proposed to “introduce the subject into medicine” by relying on the concept of “Gestaltkreis” and on the equivalence between soul and body. It states an original and infinite circular link that determines the relationship between the subject and the surrounding world. In medicine this implies a profound reconsideration of the connection between patient and disease and above all between doctor and patient. The patient suffers as much as he creates his own illness and the doctor conditions the patient as much as he is conditioned by it. The person acts, and does not undergo, the decision-making process together with the doctor. The patient’s choices and ethical values assume a central and preponderant role in the therapeutic process. The conscious strengthening of the ability to choose, enhances the value of subjectivity or the growth of self-confidence. These concepts dictate the contours of a doctor-person relationship very much in line with our current expectations. On the trail of this evolution predicted by Weizsaecker, Eliot Freidson analyzes the end of medical dominance and distinguishes between patients and people who seek help, being the first subjects who relate to doctors within the constraints imposed by the financial and organizational system, while people who seek help do so on the basis of their knowledge and perception of the problem.
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But even more than this perspective, it is in the reflection of some authors also defined as “holistic”, in a similar but not overlapping sense, that we find a profound critical reflection on the very ideas of “health” and “disease”. Among these we must first mention Georges Canguilhem [3], who, in addition to emphasizing the role played by historical and social aspects in determining the limit between normal and pathological, argues that this limit is never objectively given. What makes it real is the subjective perception of the patient in relation to his life expectancy, his experiences and perspectives. Consequently, the technical and quantitative role of medicine is reduced, in favor of a medical practice that leads to health, so it is necessary to combine technical skills with interest and attention to the patient in his complexity and human totality. These are the circumstances that allow man to live with confidence and security, regardless of the merely physiological datum. Health can therefore only be understood in relation to the totality of the human being and beyond its purely biological aspects. In this questioning of the idea of disease as well as in that of health there is in general a dissatisfaction with the separation between a more technical component of the cure and a practice of medicine and the doctor, which make the latter a scientist aimed at the purely scientific aspect, neglecting instead the aspect of caring. Rather than emphasizing the distance between the two ideas, these considerations make us understand how the idea of health must be expanded and must take into account the context that allows the individual its most complete realization. Without wishing to assume the superiority of one of the two meanings of care and care, we believe that it is necessary, while being aware of the specificities of the two senses, to promote their union in medical practice and in the very figure of the health worker. Just as the component of technical-scientific competence is essential and constitutes a fundamental achievement of modern medicine, it cannot be said to be complete without resorting to a more relational approach, in which there is a meeting between doctor and patient-Person in the properly human interest for the latter. It is therefore necessary to recover an idea of care in the full sense. In some languages, such as Italian, the distinction between care and care is lost, thanks to the common term “cure”. An idea of care of this kind is close to that elaborated in the so-called ethics of care, a conception born within the psychology of moral development in the eighties in the United States, in particular from the thought of Carol Gilligan [4]. This feminist perspective, to which numerous thinkers have contributed with original and varied visions [5], is based on the basic idea that, unlike the widespread idea of an autonomous and self-sufficient subject, we are in reality all exposed to vulnerability and dependence, as people always in relationship. Starting from this assumption, they work on a definition of a morality based precisely on care understood as empathic and responsible attention to the singularity of the other, to the enhancement of the contextual decision and concrete assistance. We are all vulnerable, and we are all involved for this in relationships of dependence, in which each of us must be considered in his totality as a person, and protected in every dimension of uniqueness. This does not mean renouncing the professionalism and scientific competence
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of the doctor, nor proposing a romantic idea of the profession understood as a vocation and linked to an exclusively sentimental involvement: it is rather an understanding of man as a total being, who needs to achieve his own balance and health not only thanks to the use of specific biomedical therapy, but also to the creation of a bond and positive communication with the caregiver. It is therefore necessary to recompose between what we could define, with a resumption of the Aristotelian lexicon, the ethical and dianoetic virtues [6], without sacrificing either the attention and involvement in the relationship, or the necessary technical competence. Without looking at the pre-scientific past, but rediscovering those most fruitful aspects, it is necessary to rethink the idea of “care” in a unified way. It is the very etymology of the terms that shows us this common origin: just as the medicus refers to the Latin verb mederi, that is, “to take care”, also the “therapy”, from therapeia, hides in itself a similar meaning. The Sanskrit root dhar, in fact, means “to carry, to sustain, to hold”. Thus the therapist is the one who supports and cares, as does the servant (in Greek, théraps, therápon). He is also the one to lean on, to cling to, to be supported and sustained by [7]. The act of caring is outside the scope of the contrast between disease and health, since in caring one does not give the achievement of a goal defined in a unique way over time, but rather a movement that accompanies human life and that consists in the practice itself. The difference lies rather in the attitude towards the otherness involved: in the act of curing what is at stake is health as an object, therefore the reconstitution of a state of balance; in caring instead it is the relationship that is central. It is not a question of placing at the center neither the subject who takes care nor the otherness object of our care, but their bond as people. If, therefore, it is not the object, but the way of considering it that determines the main difference between caring and caring, we can say that in the same idea of care is already contained the element of care: only if the act of curing a disease is accomplished through attention to the patient and his personal sensitivity, then we are faced with a complete form of care. Let’s take an example that helps us to understand this aspect, namely the figure of the mother. In its dual aspect of thought and practice, its attitude is not limited to the affective dimension of communication to the child, but is exercised mainly in providing for the satisfaction of his primary needs. A mother would not be a mother nor if she neglected the relational and sentimental aspect with respect to her child, but neither if she did not take care of his health. In the same way, even a doctor would not be adequately such if he did not hold together the technical action aimed at restoring the health situation and the creation of a human bond and real communication with the patient. It is proof that, even in the presence of irreversible diseases, the patient must be able to be accompanied at the end of his life through the help of the doctor. The purpose of medicine must therefore be to restore the link between the two senses without recognizing both equal importance in achieving an adequate idea of health. But for this to happen it
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is necessary not only to move to an idea of care that integrates the technical-scientific element to that more properly aimed at supporting and caring for the patient; but that professional figures are trained and adopt new practices in this direction, enriching their preparation beyond the classic limits of the subject. This is the goal of the disciplines born in America in the nineties called Medical Humanities [8], which indicates that set of areas of study that allows to broaden the spectrum of interest of the clinical field to new cultural spaces, normally left excluded, such as philosophy, sociology, anthropology, literature. One of the most significant products of this development of training and clinical practice is in fact narrative medicine, that is, a methodology of clinical-assistance intervention based on a specific communicative competence whose purpose is the shared construction of a personalized care path [9]. The task of the doctor, in this perspective, consists precisely in recovering the threads of the patient’s identity, helping him to express his history of illness, deciphering its symbols and metaphors [10] to rewrite together a new healing story; or, where unfortunately this is not possible, to give back to the patient an idea of his own coherent and unitary experience so that he can reach the end in the most conscious and serene way possible. It cannot be overlooked that all the variables of the doctor-patient relationship now enter the context of social interaction in which care and cure take place. The impulses of the society reverberate on health care and it seems to be witnessing a fairly decisive ideological push towards a conversion for a more solid awareness of the value of the individual and enhancement of the person. The communicative moment remains critical: it must be expanded and must constitute the real healing moment for the sick person. This ethical communication is in some way identified by narrative medicine, although the objectives that this sets itself may still appear far from the necessary centrality of the person. Today, technology can offer more than man can accept in terms of pain, awareness, dignity and freedom of choice. The finite nature of the resources that the society can attribute to healthcare must find a voice above all in the requests of the individual and his need for care, the current concept of treatment of the disease must be replaced by the concept of treatment of the person with his illness: it is not said that this is ultimately an increase in costs, indeed the holistically pursuing health of the person will likely produce less health care costs. There is currently no extensive evidence of this prediction, but the overall vision of the patient, with his history and comorbidities will certainly produce centered and more harmonious treatment goals and certainly less dispersive of resources, consultancy and laboratory tests. We would like to think that therapy proposals follow a complex path of care and attention to the clinical reality of the individual patient, setting treatment objectives not on normal values, but on the realistic possibilities of desirable/foreseeable outcome for that single patient.
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Bibliography 1. Cassel E. The nature of suffering and the goals of medicine. Oxford: Oxford University Press; 2004. 2. Berliner HS, Salmon JW. The holistic alternative to scientific medicine: history and analysis. Int J Health Serv. 1980;10(1):133–47. 3. Canguilhem G. Le normal et le pathologique. Paris: Puf; 1966. 4. Gilligan C. In a different voice. Psychological theory and womens’ development. Cambridge: Harvard University Press; 1993. 5. Held V. The ethics of care: personal, political and global. New York: Oxford University Press; 2006. 6. Pellegrino ED, Thomasma DC. The virtues in medical practice. Oxford: Oxford University Press; 1993. 7. Hillman J. Suicide and soul. New York: Harper Colophon; 1976. 8. Bleakely A. Medical humanities and medical education. How the Medical Humanities can shape better doctors. New York: Routledge; 2015. 9. Charon R. Narrative medicine. Honouring the stories of illness. Oxford: Oxford University Press; 2006. 10. Sontag S. Illness as metaphor and AIDS and its metaphors. London: Penguin; 2019. 11. Freidson E. Patients view of Medical Practice. New York: Russell Sage Foundation; 1961. 12. Gadamer HG. The enigma of health: the art of healing in a scientific age. Stanford: Stanford University Press; 1996. 13. Sackett DL, Rosenberg WM, Gray JA, Haynes RB, Richardson WS. Evidence based medicine: what it is what it isn’t. BMJ. 1946;312(7023):71–2. 14. Svaeneus S. Hermeneutics of medicine in the wake of Gadamer: the issue of Phronesis. Theor Med Bioeth. 2003;24:407–31. 15. Von Weizsaecker CF. The physical image of the world. Fratelli Fabbri; 1967.
Siteography 16. https://www.cortecostituzionale.it/actionSchedaPronuncia.do?anno=2019&numero=242 17. https://www.nytimes.com/2019/12/07/us/dna-bone-marrow-transplant-crime-lab.html 18. https://www.salute.gov.it/portale/dat/dettaglioContenutiDat.jsp
Chapter 8
Consent and Trust in the Doctor Patient Relationship Philipp Bonhoeffer, Federico Festa, Lamia Ait Ali, and Pierluigi Festa
In 1954 Lillehei and Varco carried out the first repair of a ventricular septal defect with an open-heart procedure [1]. Heart lung machines were being developed but not yet available for general use. Therefore, they applied cross circulation using the father of the child as an equivalent of the heart lung machine. The consent form signed by the father consisted of a single sentence: “I, the undersigned, hereby grant permission for an operation or any procedure the University staff deems necessary upon my son, Gregory Glidden” [2]. The boy was then hospitalized for approximately 3 months waiting for surgery while the technical approaches to the ventricular septal defect were still being worked out. Friction existed between the surgical team and the head of internal medicine in the hospital in Minneapolis where the procedure was carried out. Surgeons made sure that patients could be admitted directly to the surgical department while Internists wanted all patients to be admitted first to a medical ward. The head of internal medicine objected to cross circulation saying that it was worse than any machine, “With a machine you might lose one patient with cross circulation potentially two”. P. Bonhoeffer (*) “Science and Music” Montecastelli Pisano, Pisa, Italy e-mail: [email protected] F. Festa Studente di Giurisprudenza, Università di Pisa, Pisa, Italy L. A. Ali Institute of Clinical Physiology, CNR, Massa, Italy Foundation “G. Monasterio”, Heart Hospital “G. Pasquinucci”, Massa, Italy e-mail: [email protected] P. Festa Foundation “G. Monasterio”, Heart Hospital “G. Pasquinucci”, Massa, Italy e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Pingitore, A. M. Iacono (eds.), The Patient as a Person, New Paradigms in Healthcare, https://doi.org/10.1007/978-3-031-23852-9_8
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The procedure on Gregory was carried out 3 months after his admission to the hospital. Little did the family know about the complex discussions, the potential risks, the conflicts of interest and the mortality for father and son. The procedure was performed. The father survived and the boy died approximately 1 week after surgery. The family of the young patient put their trust into the surgeon and the institution. The way the surgeons and the institution dealt with the problem of the family would today be considered as at least paternalistic if not deceitful and would certainly not reach today’s standards of consent neither for research or treatment. With today’s approach to consent, the patient’s interest needs to be protected in a better way. The decision-making and the high complexity of the early developments of open-heart surgery at the time were considered beyond the understanding of a simple family such as the parents of Gregory. Doubts about the procedure by the family were put to rest by asking them to trust their healthcare providers. The theme of consent was relevant already in antiquity. At the time, medicine was considered an art and therefore had a component of sacrality and even the human body was considered a gift of god [3]. The medics, who were the owners of the knowledge of anatomy benefitted, like priests, from a very strong moral authority derived from the solemnity of their mission [4], As a consequence it is easy to understand that the relationship between patients and doctors was strongly paternalistic. The patient’s view played only a marginal role [4–6]. In the fifth and fourth century BC, Hippocrates and even Plato pointed out the necessary involvement of the patient’s opinion. They stated that patients needed to be given clear and correct information in order to gain their trust and that this information needed to be carefully selected and weighed [3, 4]. The information was therefore chosen in order to create a therapeutic alliance. Hippocrates suggested to doctors to acquire the trust of patients by making correct predictions such as truth tellers or oracles who had a strong moral authority [4]. Correct information, also according to Hippocrates, could prevent accusations by patients or families in case of negative outcomes. These teachings had only the intention to create a therapeutic alliance between doctor and patient and did not have a dimension of legal responsibility [4]. Patients of high social classes, contrary to the ones of the lower classes, were treated in a different way. This had implications for the patient/doctor relationship. For instance, there is evidence that doctors asked for a medical consent for a risky procedure on the Emperor Alessandro Magno in the fourth century BC [4]. Much later, with the philosophical speculations of the seventeenth century and the following liberal-enlightening revolutions of the eighteenth century these social differences lost relevance and doctors became scientists losing their religious connotation. Thereafter concepts such as individuality, self-determination, equality and human rights have developed much further and led to a fundamental change in the relationship between patients and doctors. The concept of modern informed consent was introduced not long before the first open heart procedures in the early part of the twentieth century [5]. This happened
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because of a few rather spectacular cases in which patients were not informed about major decisions regarding themselves [7]. In one case a surgeon was supposed to operate the right ear of a patient. When finding that the pathology in this ear was not so severe he moved on to operate the other ear with a bad outcome and without previous consent. In another case, a surgeon in 1905 decided to treat a patient suffering from epilepsy with a hysterectomy. The patient was never informed on the motivation of the surgery. The verdict stated: “…under a free government at least, the citizen’s first and greatest right, which underlies all others—the fight to the inviolability of his person, in other words, his right to himself is the subject of universal acquiescence, and this right necessarily forbids a physician or surgeon, however skilful or eminent, who has been asked to examine, diagnose, advise and prescribe (which are at least the necessary first steps in treatment and care) to violate without permission the bodily integrity of his patient [7]. Another landmark case in 1914, once again regarding a hysterectomy which was performed against the will of a patient, led to a ruling which clearly showed patient autonomy [7]: Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient’s consent commits an assault, for which he is liable in damages.
These cases related to medical consent and ultimately medical malpractice have led to major steps for the protection of the patient’s interest written in law. A very large part of law today deals with medical malpractice and litigations between patients and doctors and institutions in which doctors work. Therefore, the original idea of protecting patients later led to a vulnerability of doctors who then needed to protect themselves whenever litigation occurred. Today vast documents have to be explained by doctors to patients and ultimately signed by both parties before medical procedures are carried out. The legal requirements in Europe and the United States for instance, require for doctors to give explanations so that the patient can freely make a decision [8]. This makes requests to doctors which in clinical practice appear to be impossible and one might state that the law appears to be hypocritical. For instance, it is not realistic that patients can fully understand complex decision-making, which can frequently lead to different opinions even amongst experts. It is common practice, in departments of surgery, to have pre-operative meetings to which different experts are invited to give their opinion to specific cases. Very frequently the way forward, in best practice, is obtained by majority consensus, which in many cases is not unanimous. It is not useful to think that the patient confronted with a medical problem can understand in full and add to the technical decision making in complex situations. In this, the paternalistic views of the early pioneers of heart surgery, still find a justification today. If things go well medical litigation usually does not happen. When things go wrong the patients or their relatives are confronted with a situation in which they have to understand whether the negative outcome was due to malpractice or whether
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it fell into the regular justified risks of procedures. For example if 3% mortality is foreseen for a major surgery the family of the patient with a negative outcome will not understand whether he or she were falling into a justified 3% mortality or whether potentially the mortality of their surgeon significantly exceeded the 3% and therefore was not properly justified. The patient obviously does not have the opportunity to look at the general outcomes of the surgeon and her or his team to get a more global view of the quality, which was provided, in the medical care. For the doctor it is easy to include the risk of negative outcome in consenting forms and therefore give justifications for potential mistakes he or she could make during the procedure. The type of complication is to a certain degree foreseeable and therefore can be mentioned in a consent form providing a level of legal protection to the doctor. The question really is how often do these complications occur in the hands of certain doctors as compared to others. A protection for the minimum level of quality of care therefore is not part of what a consent form provides to the patient. From the first days of legal cases leading to the protection of patients the consent form has shifted in its purpose or application as a protection very largely to the health professionals. Doctors and patients are held by impossible tasks of a rather hypocritical law. Vast literature highlights shortcomings of medical consenting. Sherlock shows the low level of understanding by patients of the procedures they undergo [9]. Parmar amongst others claims that patients believe that consenting is mostly for the protection of doctors [10]. An ethical question is arising of how patients could truly be best protected. It is difficult to imagine how the legal process can help the patient as an individual. Ideally, the patient would have access to an expert opinion, which gives judgment over the individual case as much as the global activity of the care providers. In fact this could give them an element of trust in the system. Nearly every formal drug trial requires a placebo control group and a group who does not get any type of pill. This is because placebo, which is based on the concept of trust in medicine, has a measurable positive effect over the control group without any treatment. This shows that trust plays a very major role in the healing process. Trust, therefore is a good thing and there is no reason why the positive effect of trust should be neglected in classical medicine. Reintroducing the concept of trust, as it existed during the early days of open-heart surgery, although very much against current popular thought, might be an attractive and beneficial thing for patients. Importantly, the trust will have to be given to who and what is trustworthy. Education can teach to decide whom to give trust rather then making patients participate in decisions of medical subject matter, which they cannot realistically understand. Regulators or independent experts can assist in this process. After years of education to be vigilant about wrong doings of others we have lost the clear benefit and comfort that trust brings with itself. The art of learning whom and how to trust, which was central to the patient doctor relationship in the past, has been almost entirely lost.
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Also health professionals would benefit from the trust of their patients and could most likely give better health care and perform better procedures. Ultimately, patients and doctors share their wish in having optimal outcomes and trusting relationships reduce the stress for procedures for both parties. The best musician plays a wrong note in some concerts, every waiter drops a plate sooner or later during their career and for the musician and the waiter the individual mistake could have been avoided. Along the same line, doctors have negative outcomes and it would not be correct to lose trust in them if they made a mistake even if in retrospect it could have been avoidable. “Errare human est” applies to all even if consequences of medical mistakes can be devastating. The question is how the mistake occurred and in which circumstances. Current legal practice, suing doctors for mistakes, enhances the hiding of mistakes rather than using them as a basis for learning and improvement of medical practice. Complaints about medical malpractice, do not lead to an improvement in quality of care and outcomes for patients [11, 12]. In conclusion, in the authors’ opinion, the loss of trust between patients and doctors is a loss for both sides. Trust is a good thing and has benefits, which have been neglected over recent times. Distrust and suspicion of wrongdoings by the counterpart and protection from legally valid consent forms, must be counterbalanced by the understanding that doctor and patient in general share the desire of a good outcome. In the cases where this should not be a valid experts and regulators should provide for a protected system patients can trust in. Medical litigation is not a fair process because patients are in a weak position to understand whether their case merits to be taken on by law. Money gets poured into expensive and frustrating court cases. Clearly, politically and legally it is not easy to modify the consenting process nor the patient/doctor relationship. However, we believe, that an understanding of the shortcomings of the current consenting could act as a stepping stone to an improvement in the relationship between doctors and patients much like the understanding of a medical mistake can be the stepping stone to the improvement of medical procedures.
References 1. Warden HE, Cohen M, Read RC, Lillehei CW. Controlled cross circulation for open intracardiac surgery. J Thoracic Surg. 1954;28:331. 2. Jauhar S. Heart: a history: shortlisted for the Wellcome Book Prize 2019. Simon and Schuster; 2018. 3. Miles SH. Hippocrates and informed consent. Lancet. 2009;374(9698):1322–3. 4. Mallardi V. Le origini del consenso informato. Acta Otorhinolaryngol Ital. 2005;25(5):312–27. 5. Negri S. Consenso informato, diritti umani e biodiritto internazionale. Biodiritto. 2012;1:97–126. 6. Tobar A, Manuel J. El consentimiento informado en el acto médico. Universidad de Chile; 2011.
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7. Bazzano LA, Durant J, Brantley PR. A modern history of informed consent and the role of key information. Ochsner J. 2021;21(1):81–5. 8. Bolsin S, Saunders K. Informed consent in medical practice. Trends Urol Men Health. 2012;3(5):34–6. 9. Sherlock A, Brownie S. Patients’ recollection and understanding of informed consent: a literature review. ANZ J Surg. 2014;84(4):207–10. 10. Parmar P, et al. Consent in medical practice–perceptions of patients towards legal aspects of informed consent. IAIM. 2016;3(4):105–10. 11. Mello MM, et al. Malpractice liability and health care quality: a review. JAMA. 2020;323(4):352–66. 12. Treglia M, et al. Medical liability: review of a whole year of judgments of the civil court of Rome. Int J Environ Res Public Health. 2021;18(11):6019.
Chapter 9
Big Data and Precision Medicine Paolo Piaggi
The advance in technologies capturing biological data at different levels (e.g., cellular, tissue and whole-body levels) from bio-specimens, health records, medical sensors and imaging has recently led to the generation of large amounts of biomedical data (“Big data”) that can be analyzed to identify disease-related data features in order to customize medical treatments unique to the individual and for ultimately improving health (“precision medicine”) [1]. Big data for precision medicine arises from a vast collection of sources that include omics platforms (genomics, transcriptomics, proteomics, metabolomics, metagenomics, epigenomics), electronic health records, imaging methods, and wearable sensors that acquire vital signals such as heart and respiratory rate for long periods of time. The data sets generated by these methods are characterized by three “V” peculiarities [2]: volume (they typically have a large size due to many variables being included), velocity (they are generated at relatively higher speed despite their size), and variety (they include variables generated by different methodologies). Specifically, the complexity of Big Data sets arises from both the number of available samples in the database and the intrinsic differences among included variables. For instance, in the USA the precision medicine program plans to map approximately one million human genomes by next generation sequencing methods along with measurements of microbiome composition, health history, lifestyle, and diet. Similarly, the European Commission has proposed large-scale population studies to collect biological samples in different tissues and/ or conditions (e.g., prior to and after a treatment) in pathology-based human biobanks for biomedical research and diagnostic purposes. Further, electronic health records provide a good example of large and complex data sets typical of Big Data. They contain multiple information for a large number of individuals regarding their socio-demographic characteristics, medical conditions, and treatment, which could P. Piaggi (*) Department of Information Engineering, University of Pisa, Pisa, Italy e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Pingitore, A. M. Iacono (eds.), The Patient as a Person, New Paradigms in Healthcare, https://doi.org/10.1007/978-3-031-23852-9_9
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be exploited for developing preventative and therapeutic plans of diseases. Yet, the large size of data bases and heterogeneity of information within these records pose major challenges for their analysis, including the proper association of patient records to one specific disease and the integration of these records with other data sets (e.g., omics data) related to the same individual to obtain a better understanding of the course of his/her disease and its potential treatment. From a biological perspective, the challenges of Big Data analysis reflect the high complexity of human physiology systems [3–5]. Physiological complexity arises from the following characteristics of biological systems as proposed by Yates [6]: large number of highly diverse and redundant biological elements (e.g., cells in different tissues), their nonlinear interactions and their hierarchy depending on the physical scale. As a matter of fact, the human body is structured and organized at different levels starting from genes up to organs and systems, reflecting a complex hierarchy of regulatory mechanisms acting at different levels (e.g., local control of chemical and enzymatic reactions, as well as hormonal and neural control at whole- body level) that, jointly, can guarantee the overall homeostasis of entire organism in different physiological conditions. A common example of highly complex physiological system is the central nervous system that include a large number of interconnected neurons, capable of performing several, highly diverse physiological tasks by integrating information from the periphery and by exerting downstream effects on many physiological systems. Despite the overarching role of nervous system in physiological regulation, it does not have direct control of many biological processes such as chemical reactions, which are self-regulated based on local (cellular) conditions. An important element that contributes to physiological complexity is feedback between distinct biological systems. For instance, regulation of glucose metabolism via the hormone insulin represents a classical example of negative biological feedback. In a simple schematization, the ingestion of dietary carbohydrates increases glycemia, which in turn triggers the secretion of insulin that ultimately lowers plasma glucose concentration mainly via inhibition of endogenous glucose production by the liver, as well as by increasing glucose uptake and utilization in peripheral tissues [3]. In this biological context, the glucose-insulin feedback system allows, in healthy individuals, the maintenance of glucose homeostasis in settings of acute eating episodes. Clearly, the regulation of glucose metabolism is not exclusively achieved by insulin action as other mechanisms act in concert to ultimately achieve euglycemia in other settings. For instance, in states of hypoglycemia such as during prolonged fasting or following strenuous exercise, glucagon and growth hormone along with catecholamines are the predominant physiological effectors to prevent the decrease in glycemia below critical levels. In summary, the presence of multiple interconnected biological systems in human body contributes to the physiological complexity that is reflected in Big Data analysis of health and clinical records. Due to the large size and complex structure of these data sets that have been available for every patient in recent years, analysis and interpretation by physicians cannot be directly performed and there is an increasing need of data scientists with expertise in bioinformatics and multivariate statistical analysis to approach these
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complex and extended data sets (Fig. 9.1). Among the computational methods used by scientists to extract valuable information from large and diverse data sets, machine learning algorithms have been successfully applied to the analysis of Big Data. These algorithms can be divided in two classes: supervised and unsupervised learning techniques. The former class includes methods such as support vector machines, kernel-based methods, and logistic regression that are based on prior knowledge about the status of each individuals (e.g., cases with disease vs. healthy controls). The algorithm is applied to data of a training set with the goal of maximizing the difference between cases and controls and then classify data from external validation sets to make a diagnosis. Conversely, the latter class includes data-driven clustering methods (e.g., hierarchical clustering and K-means) and techniques of data dimensionality reduction to classify samples into different groups based on their similarity and to extract few meaningful features among hundreds or thousands measured variables (e.g., genetic polymorphisms obtained by sequencing methods). The analysis of Big Data by traditional (e.g., classical data mining approaches) and more sophisticated techniques (e.g., artificial intelligence algorithms) is expected to lead to individualized diagnosis and improved treatment by identifying the pathophysiology mechanisms underlying multiple, chronic medical conditions and diseases such as obesity, diabetes, and cancer. For instance, in the context of obesity—a multi-factorial condition arising from sustained energy imbalance in which energy intake exceeds expenditure—it has been demonstrated that the large inter-individual variability in weight gain is ascribable to genetic differences, which have been uncovered by Big Data analysis in large-scale genome-wide association
Fig. 9.1 Graphical representation of Big Data research in the context of precision medicine. Biomedical data obtained from the heterogeneous population via different methodologies are analyzed by data scientists using multivariate, machine learning techniques to identify clinical features that can support physicians to refine diagnosis and treatments specifically for each individual. This figure was created with BioRender.com
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studies [7, 8]. These genetic differences among individuals may reflect in part inter- individuals difference in energy metabolism, particularly in the metabolic responses to diet that are critical to an individual’s weight homeostasis [9–14]. Specifically, the intrinsic tendency to gain weight during caloric excess [15–19] (metabolic “thriftiness”) or to lose weight during caloric restriction (“spendthriftiness” [20– 23]) is different across individuals on the same diet and reflects the same underlying metabolic phenotype unique to an individual [24, 25] which can identified by Big Data analysis [26, 27]. For instance, studies of the human metabolome have yielded significant insights into obesity and diabetes [28–41] with some showing differences in the metabolome according to dietary exposure [32, 42–47]. In addition to differences in energy metabolism among individuals that can explain the propensity to weight gain and obesity, diet also plays a major role in long-term body weight homeostasis. A diet that comprises primarily complex carbohydrates, lean proteins and small amount of saturated fat and sugar has been recommended to prevent obesity and related diseases. However, responses to different diets vary among individuals on the basis of physiology which can be quantified by omics measurements, a fundamental approach to accelerate biomarker discovery and drug development with the goal to develop algorithms to predict how an individual responds to a diet and prescribe the optimal diet for each person. Despite the substantial advantages of Big data to advance medical care, the widespread availability of biomedical data, including personal data, collected in large cohorts of individuals poses critical ethical challenges [48, 49]. The ethical principles that are mainly involved in such large-scale studies are those related to participants’ autonomy, equity, and privacy [50]. Respecting individuals’ autonomy is achieved via informed consent which provides detailed information about the benefits of research and the associated risks, particularly for the use of deidentified data in publicly available platforms. Yet, due to the hypothesis-generating, data-driven research associated with Big Data, consent language needs to clearly specify how/what data will be made publicly available such that participants understand how their information will be used to generate novel medical findings to improve healthcare of population. To this aim, large-scale studies must include individuals of different races/ethnicities and socio-economic classes to ensure equity across all categories while providing a representative sample of the general population such that all individuals will benefit from Big Data research. Specifically, all efforts should be made to recruit individuals from underrepresented populations to avoid disparities and selection biases when interpreting downstream Big Data results. This is particularly important in the context of precision medicine as findings from Big Data analysis may be specific to certain subpopulations and might not be generalized to the entire population. For instance, a novel medical treatment for a given disease may be more effective in certain subpopulations while causing suboptimal outcomes or side effects in other subpopulations. Lastly, protection of individuals’ privacy is of a paramount importance. Privacy protection needs to be ensured at different stages of Big Data analysis including data generation, data storage, and data processing. To this aim, anonymization techniques must be implemented to protect the privacy of data and prevent re-identification of private or sensitive information. Further, extreme care
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should be taken when data are transferred to and stored in data centers to exploit cloud computing for Big Data analysis. In summary, the increasing relevance of Big Data analysis in precision medicine will improve clinical care by prevention and early detection of diseases, personalization of interventions, ultimately improving health in the years to come.
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40. Petrus P, Lecoutre S, Dollet L, Wiel C, Sulen A, Gao H, et al. Glutamine links obesity to inflammation in human white adipose tissue. Cell Metab. 2020;31(2):375–390.e11. 41. Cirulli ET, Guo L, Leon Swisher C, Shah N, Huang L, Napier LA, et al. Profound perturbation of the metabolome in obesity is associated with health risk. Cell Metab. 2019;29(2):488–500.e2. 42. Steinhauser ML, Olenchock BA, O’Keefe J, Lun M, Pierce KA, Lee H, et al. The circulating metabolome of human starvation. JCI Insight. 2018;3(16):e121434. 43. Oberbach A, Bluher M, Wirth H, Till H, Kovacs P, Kullnick Y, et al. Combined proteomic and metabolomic profiling of serum reveals association of the complement system with obesity and identifies novel markers of body fat mass changes. J Proteome Res. 2011;10(10):4769–88. 44. Stroeve JH, Saccenti E, Bouwman J, Dane A, Strassburg K, Vervoort J, et al. Weight loss predictability by plasma metabolic signatures in adults with obesity and morbid obesity of the DiOGenes study. Obesity (Silver Spring). 2016;24(2):379–88. 45. Wahl S, Vogt S, Stuckler F, Krumsiek J, Bartel J, Kacprowski T, et al. Multi-omic signature of body weight change: results from a population-based cohort study. BMC Med. 2015;13:48. 46. Reinehr T, Wolters B, Knop C, Lass N, Hellmuth C, Harder U, et al. Changes in the serum metabolite profile in obese children with weight loss. Eur J Nutr. 2015;54(2):173–81. 47. Vijay A, Valdes AM. The metabolomic signatures of weight change. Metabolites. 2019;9(4):67. 48. Someh I, Davern M, Breidbach CF, Shanks G. Ethical issues in big data analytics: a stakeholder perspective. Commun Assoc Inf Syst. 2019;44(1):34. 49. Hosseini M, Wieczorek M, Gordijn B. Ethical issues in social science research employing big data. Sci Eng Ethics. 2022;28(3):1–21. 50. Howe Iii EG, Elenberg F. Ethical challenges posed by big data. Innov Clin Neurosci. 2020;17(10-12):24–30.
Chapter 10
Rehabilitation After a Disease: What Is “Normality” After an Invalidating Disease? Sergio Maria Giovanni Vinciguerra and Valerio Sarmati
“How does your shoulder feel?”—When a therapist asks this question, they intend to fulfil the task of enriching their observation with the first-person experience with the patient, as the rehabilitative datum emerges from the relationship between the two. “It feels as if it’s all rusty”—to share one of their intimate and personal sensations with their therapist the patient draws on a metaphor, thus creating a bridge which is able to put the interlocutor in the condition of being able to experience their own sensations; in other words it is as if the patient says: “If you want to understand how my shoulder feels, you have to experience it as if it were blocked by rust”. The patient’s words and the metaphors, allow for the construction of a Us, a new entity nourished by mutual learning: the patient, who is living a pathological condition, learns a new way of relating to the world while the therapist learns to feel the changes that are going on in the patient’s body, to understand his or hers emotions and to construct rehabilitative experiences that are increasingly meaningful for the purpose of recovery. Within this new Us coexists different ways in which the patient and the therapist interact and interpret the body, movement, and recovery. For example, the description of a shoulder as if it were blocked by rust, could communicate not only the motor impediment, but more deeply also a mechanical relationship with the body and the world. Therapists are aware that they will not only have to affect the patients’ physical shoulder, but also the way in which it is perceived and experienced, because as long as the latter will mechanically interact with one’s body, a physical and external intervention will be required without considering the perceptive and cognitive value that the movement of the shoulder can assume for the system, one’s experience of care could be poor and limited. For historical, cultural and didactic reasons the mind and the body are often narrated as separate elements S. M. G. Vinciguerra (*) · V. Sarmati Università La Sapienza, Rome, Italy e-mail: [email protected]; [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Pingitore, A. M. Iacono (eds.), The Patient as a Person, New Paradigms in Healthcare, https://doi.org/10.1007/978-3-031-23852-9_10
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during the interaction through language, metaphors and the movements that patient and therapist often perform contemporary, i.e. when the motor component of an exercise which is the responsibility of the therapist, finally acts as an inseparable entity—a rehabilitative unit. The therapist who is focused on the experience of the patient, accepts the metaphor as a possibility to look directly at the internal panorama of the patient, grasping the models through which the world is experienced and consequently how they behave in it. If for the professionals it is important to effectively carry out their roles of facilitator and guides, it is just as important to understand how the patient behaves towards his or hers shoulder and one’s body in general. It is even more important to understand how they behave towards the entire process of care therefore making way for new questions that may arise: how do they live the relationship with the disease and the care? “I am a warrior fighting against a monster” is the metaphor with which physical therapists come into contact most often when they find themselves helping a person who has suffered a brain stroke. As in the case of the shoulder blocked by rust, this metaphor is not only intended to give color and emphasis to the patient’s story, but it can reveal the way in which the patient is facing his or her treatment path. In the new Us built by the patient-therapist, even the metaphors of the rehabilitators take on a central role, in fact, even the professionals share the same conceptual landscape and not shy away from the model that sees the patient engaged in the heroic task of defeating the disease represented by the monster but rather giving support with the necessary weapons to help defeat the monster. There are undoubted advantages that arise from putting oneself in the shoes of a warrior, the only true hero capable of performing the epic feat of defeating the disease identified in a monster, because this initial approach prepares the patient for a path that will be long and will require a lot of energy and even just the preparation for a battle, offers enough hate and charge to encourage the patient to undertake their own march through the battlefield of therapy. The patient is a warrior who presents him or herself to the physiotherapists totally defenceless without the weapons needed to face the long battle. They are armed only with their determination to succeed, which sometimes is confused with the fear of not succeeding and it must be the professional who will dress them with armor and all the necessary strategies to come out as a winner. At the beginning of the therapeutic process, being able to count on an emotional boost of such magnitude is very useful for the professionals, however, dressing the role of a warrior who has sworn revenge on the monster, can hide many traps that will make the therapeutic process even more complex. The hero-warrior resides poetic and romantic virtues such as courage, duty, loyalty, justice and coherence that are needed in the fight against the stroke: the terrible enemy that has brought the patient to their knees. However, there are some fundamental characteristics that are missing and which allow a person to accept the damage, to live with it as part of one’s new self and from which the patient will have to begin a transformation that will not depend only on the quality of the exercises proposed in the gym by the physiotherapist, and not even on the level of determination brought into play by the patient, but also on the
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patient’s ability to reconcile with his or hers own life and transfer what has been learnt during the therapy. A cerebral infarction often marks the paralysis of the arm and leg on one half of the body, an obvious and dramatic disability which people often feel torn away from their own lives. All points of contact with the identity that he or she had built moment by moment, now seem to be severed. From that exact moment on, they are forced to live a new existence, a “courtesy life” offered just long enough to take back the old one, to return to the exact minute before the encounter with the monster. The patients set out on a journey to find their past with the complicity of all the means offered to reach it: Re-habilitation, Re-education, Re-covery, everything speaks of a Re-turn. During the journey, the patient comes to terms with the physical and existential devastation caused by the stroke, its unnecessary violence fuels hatred towards an evil and powerful entity such as the monster that must be driven out and defeated. A duel of honor to which the heroes cannot escape and that can have only two outcomes: the recovery and the return to one’s life or defeat and exile forced to live beyond the boundaries of normality alone and humiliated with one’s disability. For the patient to recover after a stroke means to regain his or hers motor functions, so to return to walk as before and be able to use again the paretic hand so as to regain possession of one’s work and interests. This goal, as far as possible, is accessible to a very small number of patients because of the extreme asymmetry between the lesion and its outcome, where even a seemingly very slight damage of brain tissue can lead to disabling and permanent consequences. Thus, the metaphor of the hero-warrior forces millions of people every year to live a failure and with them all the professionals who shave hared this metaphor. At an early stage, feeding the metaphor of the monster and the warrior, appears to be the most immediate and useful choice for the physiotherapist because the patient, must avoid a possible risk of depression and take action promptly, for this reason the programming that sees them lined up on the side of good and dropped in an epic adventure, is apparently the most rapid and effective possibility to guide the patients immediately. The physiotherapist needs the patient to live a healthy obsession for their therapeutic path, to observe all the indications they give and to respect every rule with discipline, because fighting the monster doesn’t allow for distractions and among the hero’s virtues constancy and abnegation are always in the front row. As in all care pathways, adherence to the therapeutic plan is the key to success and to obtain from the patient and the family a total compliance with the complex network of indications, rules and recommendations, the metaphor of the warrior fighting with an evil monster offers an immediate collaborative and participatory attitude with those who will help them win that fight thanks to the weapons of science. In the case of post-stroke recovery, technically there are some aspects to be considered such as those related to the risk of increased muscle stiffness (spasticity), when the patient is subjected to efforts or even to apparently simple activities in one’s daily life, for this especially in the early months of recovery, where the central
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nervous system is particularly lively in creating new connections, the physiotherapist needs the patient to do a lot of therapy and to observe all the necessary indications in order not to alter the results obtained. For this reason, the creation of a new dimension, where the therapy element is central, is the best the physiotherapist can hope in maintaining maximum control over the process. Soon, the patient will also have to deal with another enemy: Time. In fact even since the early days, the clinical staff has always been ready to help the patient and the family with the difficulties in obtaining the hoped-for recovery. It is necessary to identify within the first 12 months the window of time with which most of the progress will be shown, and then leave room for a period of slow and minimal, though possible, acquisitions. The patient-warrior finds him or herself having to fight the battle against the monster in a frantic race against time. Fighting the monster and coming out victorious means to heal and regain one’s life from the exact point where it was abruptly interrupted, but healing is not a unique event that has a precise location in time, it is a process composed of many evolutionary stages, in fact, while family members are able to appreciate the progress of their loved one, because they see what he or she has been able to build, often the patient underestimates their own achievements because their eyes are turned to what is still missing. As the weeks and months go by, the determination generated by the creation of the role of the warrior, begins to give way to the frustration of impending failure, the sense of guilt for having disappointed the expectations of those to whom he thought he could prove successful in the enterprise; shame. The patient who at the end of the 12 months begins to reckon with the failure of the campaign against the monster, in reality is often able to boast numerous progresses that compared to the first days after the stroke they are able to already walk, although with difficulty and squeeze one’s hand shut, progresses among other things that most of the times are difficult even to hope for. The patient is not cured, and the monster has not been killed, but to a certain extent he or she has recovered and has shown significant improvements. It is precisely from the conflict between these two terms, recovery and cure, that a pocket of misunderstanding is generated that the patient will have to deal with during the years that follow. The first question that patients and family members ask doctors is whether it is possible to go back to the way things were before, to heal and take back one’s life, but professionals think in other terms, those of progressive, improvement and recovery of both motor and cognitive skills and daily-like experiences. In the difference between healing and recovery, the metaphor of the warrior and the monster begins to break down and a new dichotomy comes to life, that between therapy and life. The patient who doesn’t accept taking back his or hers own existence because their goal is to regain it only when the defeated monsters take their last breathe, could be reflected in the same reluctance of the therapist to leave this task unfinished allowing the patients to conclude their rehabilitation path even before having successfully achieved the goal. It is legitimate to think that therapist and patient work together in a complex way, modifying themselves and letting themselves be modified by the world they interact with, where one represents the extension of the mind and body of the other, a mind no longer residing exclusively in the head, but spread
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throughout the body, between bodies, as partly suggested by Gregory Bateson’s question when he addressed the problem of the boundaries of mental systems: “But what about “me”? Suppose I am a blind man, and I use a stick. I go tap, tap, tap. Where do I start? Is my mental system bound to the handle of the stick? Is it bound by my skin? Does it start halfway up the stick? Does it start at the tip of the stick?” We extend the same question in the study of the patient-therapist systems during which the two find themselves acting together during the treatment, communicating, also exploiting the value of metaphors as in the case of that of the post-stroke patients. The patients identify themselves as a warrior fighting against a monster, a metaphor that allows us to question the relationship, the new Us, which emerges and also helps the professionals to identify their own models of understanding of the world and of care, suggesting in this case that it is not the patient who belongs to them, but the mandate to help the people to consciously reconcile with their own lives to the best of their ability. The rehabilitator attentive to the words of sick people, places interest in the way in which he or she creatively constructs the models on which to draw understanding about their own behavior towards the disease and recovery, only in this way it is possible to get in touch also with other metaphors of the post-stroke patient, different from those of the warrior and with characteristics probably more functional to the care. “I am like a child learning”. This is a very different metaphor from that of the warrior, less frequent, but that can often be encountered. It is a metaphor that puts the patient in a position to value small and constant daily progress, freeing he or she from the grip of temporal limits, allowing one to turn to what they can build and not focus on how far they are from being how they once were. The child is characterized by the virtue of wonder which is absent in the warrior. Every time a child improves the fragmentation of his or her body receptor surface and is able to create new relationships with the world and this generates wonder and curiosity, which are properties that the physiotherapists need their patients to develop by breaking down the walls of the clinic and allowing them to transfer into life what has been learnt during the exercises. The warriors are determined and disciplined especially in the battlefield of the gymnasium, they are ready to face pain and physical efforts, while the children are constantly surprised by the new relationships, they are able to create with the world and letting themselves be led by curiosity and play, extending it even outside the therapeutic environment the experience of their body and the world. This metaphor, if also shared by the physiotherapists, could leave room for a behavior ideally functional to the process of care, in fact, to an immediate responsibility towards the evolution of the patient and the need for guidance and protection, fulfilling the desire to affect the autonomy of the patient generated during their evolutionary process, a healthy responsibility towards the care that allows them to recognize the moment when feeling ready can coincide again with their life. “I feel like an explorer”. Again, the virtue of this creative dimension is curiosity to which the ambition to discover new worlds is associated. An explorer is both a scholar driven by passion, but is also guided by method and study, characteristics once again functional to the physiotherapist who requires the patients to live their treatment path with awareness: self-analysis, the pathology and their own
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relationship with the world. The explorer is also an autonomous figure, able to plan expeditions independently, and these characteristics of autonomy and independence are also fundamental for the physiotherapist, whose work is also centered on the emancipation of the patients, who at some point during the treatment will have to continue their journey alone. The virtues and intentional benefits of the metaphor of the explorer, could also invest the physical therapists who share the same creative model inducing them to live the care with the same boldness and curiosity, aware that their patient at some point will be engaged in a campaign that will see them return to being alone and independent in exploration. “I put one foot on the train of life” Therapy and life are seen in this case as two distinct trains where the patient decides to get on one or the other. In the first period following the stroke, the choice to get on the train of therapy is forced and necessary, but putting a foot on the train of life requires an intentional and conscious act. Life is a journey and as such is made of stages, paths, routes and the train of therapy is a means that leads the patient to a point in the journey where he or she decides to put a foot on the train of life to resume one’s existence and identity. On the trains of life and therapy one could argue about the possibility of living them as a single train where therapy represents one of the many carriages to path through during the same journey, but the relevant fact is that this metaphor introduces the element of life underlining its identity and assumes a key value with which even the professional who during the period of treatment has given protection like a parent, supported as an ally and accompanied their patients who at some point feel the need to leave the field of treatment and live their own lives. Following the hypothesis of the creation of a new system resulting from the interaction between patient and therapist, it is possible to extend the reflection on a mind able to take on social and collective connotations, in fact, the patient as an individual is closely linked to the family context that in turn involved by the drama of the disease of one of its components, has creatively participated in the construction of a metaphorical model to understands and act upon. The patient after a stroke, especially in the first months and years is closely linked to the family processes to the point of depending on them to a large extent, for this reason the professional whose mandate is the recovery understood as ensuring the patient the ability to reconcile with his or her life to the maximum of one’s ability, cannot escape from investigating how the metaphors relating to care and the relationship between them are generated within the family. This investigation could give rise to new metaphors that, however, when produced by a family member, have the potential to participate in a positive way in the care process, facilitating or even hindering it. For this reason, an active involvement of the family is desirable in order to facilitate the integration and evolution of the way in which the family, understood as an ecosystem, faces and acts within the care process. Finally, looking beyond the patient-therapist-family ecosystem, in a world pervaded by increasing connectivity, we must not exclude from our analysis the collaboration and influence between multiple therapists and multiple patients, pushing us to investigate the relationship between the complexity of systems generated and deepen the rules with which it is organized.
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Suggested Reading 1. 2. 3. 4.
Perfetti CC. Rieducazione Motoria dell’Emiplegico. Milan: Libraio Ghedini Ed; 1979. Lakoff G, Johnson M. Metaphor we live by. Chicago: University of Chicago Press; 1980. Bateson G. Verso un’ecologia della mente. San Francisco: Chandler Publishing Company; 1972. Iacono AM. L’illusione e il sostituto. Riprodurre, imitare, rappresentare. Milan: Bruno Mondadori; 2010. 5. Good BJ. Medicine, rationality and experience: an anthropological perspective. Cambridge: Cambridge University Press; 1994. 6. Manzotti R. The spread mind: why consciousness and the world are one. New York: OR Books; 2018.
Part II
The Patient as a Person and the Disease
Chapter 11
Toward Patient Care: Integrative and Complementary Approaches Francesca Mastorci
Introduction Over the past few years, the vision of medicine has changed from reactive disease care to predictive, preventive, personalized, and participatory perspective (P4 medicine)—as stated by Leroy Hood and other pioneers of systems medicine [1]. The core element of this evolving era primarily focuses on the better understanding of health and well-being through healthcare applications, big data, and artificial intelligence, in order to provide more cost-effective disease care, reduce the incidence of disease, and replicate results on a larger scale. Furthermore, thanks to systems biology, medicine is beginning to offer personalized information about health programs both in healthy and in disease conditions, taking holistic, but quantified approaches to the challenge of biological complexity. Today, P4 medicine is configured as a revolutionary new biomedical approach that overcomes the reductionist view of traditional clinical practice by founding it on a great amount of data acquired by biological networks and integrating it to develop a ‘network of networks’ in order to comprehend the human being. In this context, systems medicine supported by analytic tools, systems theory, and mathematical modelling, has recently been proposed as a strategy that promises to meet these new challenges. Here, the understanding of the patient as a person is pivotal to develop the “person-centered” medicine as an emergent model. Thus, driven by the increasing demand for greater control over one’s health, a new model of healthcare based on the interaction between conventional and complementary approaches is developing. This vision puts the patient at the center of their own treatment care, emphasizing the patient’s experience of illness, the
F. Mastorci (*) Institute of Clinical Physiology, National Research Council, Pisa, Italy e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Pingitore, A. M. Iacono (eds.), The Patient as a Person, New Paradigms in Healthcare, https://doi.org/10.1007/978-3-031-23852-9_11
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psychosocial context, and shared decision-making. Hence the need to consider this new approach in parallel with conventional therapeutic approaches. This new model is characterized by the importance of the therapeutic relationship, where the patient is considered not only on a physical level and on the clinical correlates of the disease, but it also includes the patients’ concept of illness and cultural beliefs. Here, it is argued that new forms of approaches by patients and consumers are the key to integrating the different elements that come from clinical and non-clinical fields. The following chapter will discuss the history of complementary medicine, its principles, current status, the main areas of application in clinical practice and in the field of research, and the recommendations for practicing it.
History and Definitions Integrative medicine (IM) is a healing-oriented medicine that considers the person as a whole (body, mind, and spirit), including all factors related to lifestyle habits, and highlighting the role of the therapeutic relationship when using different therapies. For this reason, it is considered a bridge between conventional or traditional and alternative medical systems, where alternative is essentially defined as those disciplines that exist outside the traditional institutions applied to well-being, mind- body connection, and spirituality. IM highlights multimodal interventions, additive to the traditional clinical practice, from lifestyle changes and rehabilitation to different combinations of approaches focused on treating the whole person and not one organ system. The term “Integrative Medicine” was coined in 1990s with the aim of mixing complementary and alternative medicine (CAM) with traditional therapies. Although “complementary and alternative” is often used as a single category, it can be useful to make a distinction between the two terms. According to the US National Center for Complementary and Integrative Health, if a non-mainstream practice is used together with conventional medicine, it’s considered to be “complementary”, while on the other hand when it is used instead of conventional medicine, it’s considered to be “alternative”. However, some authors use the term “unconventional” with the same connotation of complementary, which causes misunderstandings and confusion in terminology. In this chapter, I will be making use of the term “complementary and alternative medicine” according to the definition adopted by the Cochrane Collaboration [2], in which CAM includes all practices and techniques to prevent or treat an illness or in promoting health and wellbeing. As complementary and alternative treatments are typically used with the intention of treating or curing a health condition, CAM is an increasing field of healthcare practice, although it is necessary not to consider it as a single field of action, but rather as a range of concepts, including systems of medicine (e.g. meditation, relaxation, homeopathy, yoga), methods (e.g. manipulation practices, respiration techniques), and therapies (e.g. Reiki, healing touch). In the 1970s and 1980s, these disciplines were considered as an alternative to conventional health care, so much so that they were defined as “alternative medicine”. The term “complementary”
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over the years, has taken on another meaning becoming a group of disciplines itself, for emotional and physical healing. The interest in complementary medicine is growing in different clinical contexts and, if until recently for a doctor to be interested in complementary medicine was certainly not flattering. Today, complementary methods are carving out more and more space in the clinical setting for their effects on the person in support of conventional therapy. Complementary approaches arise in Western countries from Eastern practices of meditation, mysticism and other philosophies and from the awareness of the limitations of conventional clinical practice often associated with the patient’s depersonalization and disempowerment. In other words, complementary medicine has the role of filling those gaps related to the lack of compassion claimed by many patients forcing them to try strategies outside the clinical reality, especially when the management of the disease, and not its recovery, is the only thing a physician can offer. Unlike in the past, as medicine evolves, there is less and less difficulty in labeling different therapies as CAM, and there is the tendency to focus on developing approaches needed to create optimal status of well-being according to the multifactorial and multilevel view of human health, as a combination of physical, psychosocial, and spiritual dimensions. In fact, if until the end of the twentieth century, many complementary therapies had not yet been included in clinical trials in patients, at the beginning of the twenty-first century, there was an increase in the clinical exploration of various CAM therapies. Among the most widely used CAM approaches one may find manipulative therapies (such as chiropractic and massage therapy), yoga and other forms of exercise, and acupuncture. Recently, from the field of psychology new ideas regarding not only care and treatment, but also involving the concepts of general health and well- being are evolving, incorporating techniques outside the fields of medical and mental health, including biofeedback, and meditation.
Self-Management and Patient Empowerment The realization and the success of the actual complementary therapies, that highlight humanistic conceptions of the patient, is often linked to the application of a holistic approach, which was considered important already during the times of Hippocrates who wrote “It is more important to know what sort of person has a disease than to know what sort of disease a person has”. This was resumed in the late 1920s by the physician Francis Peabody who profoundly influenced medical thought by to combine medical science and humanitarian care, up to the 1950s with Michael Balint book ‘The doctor, his patient and the illness’ by highlighting the importance of a treatment focused on the individual and not just centred on the disease. Indeed, it is precisely on the ability to communicate and understand the patient beyond the physical signs or symptoms that the holistic approach is based. This approach to health addresses the psychological, societal, ethical and spiritual as well as biological and clinical dimensions of health and illness, emphasizing the
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uniqueness of each patient and the mutuality of the doctor-patient relationship, emphasizing the importance of the spiritual aspects of life in overall well-being. This attitude also opens up to the responsibility that each patient must have towards their own health, involving knowledge, skill, and empowerment defined as a greater sense of control over one’s life. According to the World Health Organization, and a more general holistic perspective, empowerment is defined as a process with which patients gain greater control over decisions and actions regarding their health. Generally, it is a pivotal field within global and social health, and from a patientcentred care point of view, it is the key component of complementary medicine and approaches, in order to combine the body, mind and spiritual aspects of health. Regardless the CAM approach, the underlying concept is that health goes beyond the mere absence of disease and includes in its complexity not only physical or genetic factors, but also emotional, psychosocial, environmental and spiritual aspects. Thus, the patient is a person, with its biological and behavioral variations and its differences and not an alphanumeric code for statistical average and clinical studies. This holistic point of view is more than complementary and is widely acknowledged as a crucial aspect of high-quality care. It is an approach that analyses the disease and how its clinical component is perceived by affecting the patient’s life in all dimensions: physical, mental and spiritual. In this way, starting from the concepts of the biopsychosocial model, it is possible to improve the process of clinical evaluation, treatment planning and clinical intervention, especially in the context of chronic diseases that require daily management by the patient. Among these, in recent years, the awareness in the field of cardiology that alterations in the psycho-emotional profile and social stress factors can play a role of primary importance in the development of cardiovascular diseases has increased. This necessity leads to the development of the new so-called branch “Behavioral Cardiology” involving health behaviors, emotions, mental mindsets, stress management, social connectedness, and a sense of purpose. Therefore, prevention in the cardiovascular field must be considered from the perspective of a dialogue between environmental factors, gene modulation, homeostatic regulatory systems, and the emotional dimension, not only to outline possible intervention strategies, but to concretely consider the patient at the center of one’s path of care. A scenario is thus envisaged in which the patients becomes aware their own clinical situation and at the same time possess the tools to be proactive and participatory. The awareness of one’s well-being or state of illness, intimately linked to resilience as a capacity to adapt, leads to the concept of empowerment, understood as the strengthening of one’s abilities. It is intimately related to the change of rule, from patient to person, therefore from cure to care, is to involve patients in the medical decision-making process and in self-management. The growing involvement of the patient and the need to be a protagonist and not just a passive actor in the decision-making process represents one of the new challenges in the healthcare world. Empowerment promotes health-friendly behaviors, providing the person with the critical tools to make better decisions for one’s well- being. Among the fundamental aspects of this phenomenon is the participation of the patient, which can take place at different levels. All this leads consequently to
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the evolution in the doctor-patient relationship. There is, therefore, a profound change of perspective, which involves the establishment of a relationship of mutual respect and trust, based on a clear and authentic communication. With the patient, there is therefore a real cultural change, which pushes the doctor to reconsider not only professional skills, but above all relational and social ones. Indeed, according to the complementary approaches, the therapeutic relationship represents the cornerstone in which patient and practitioner are partners in the healing process. Relationship-centered care enables one to communicate more effectively, and thus facilitates the healing process, but for this to happen the aim must be based on the discovery of biologic, psychological, and social factors that affect health.
omplementary Health Approaches: An Intermingled C Connection Between Mind, Body, and Spirituality Given the need for preventive care, acute and chronic disease management, health promotion strategies, and finally, the complexity of human beings, a wide range of complementary programs are being developed by health systems and not clinical institutions. The substrate of the different programs is articulated in techniques such as hypnosis, mindfulness meditation, and yoga, and some involving psychosomatic methods such as biofeedback, group support, nutritional counseling, massages, and acupuncture. Essentially, complementary approaches can be classified in physical, psychological, or the combination of both; in other words they are based on the link between body and mind, and thus spirituality. In fact, CAM starts from the notion that human beings are a mix of emotional, mental and spiritual dimensions that are essential in the diagnosis and treatment of diseases and the cultivation of one’s well-being. Although medicine and spirituality may seem two distant contexts, and in some respects opposites, according to what was theorized by Descartes “Physicians believe that care of the body and its disorders occupies a completely different realm than that of spirituality. Because medicine is rational and spiritual care is nonrational, their union is incompatible”, in recent years there has been a growing re- evaluation of how medicine interfaces with spirituality. This is also related to the fact that many people around the world, regardless of their culture and origin, believe that spirituality is just as vital to healing as current medicine. In fact, a series of epidemiological, clinical and psychological studies have provided important contributions to the link between spirituality and health outcomes, although some critics of this field have suggested that these findings are bias including the lack of confounding variables such as social support, age and lifestyle habits. Recent reports have provided a response to this criticism, and especially in the context of serious illness, many studies now reveal a connection between medicine and spirituality above all in women compared to men, defined spirituality as the way in which individuals seek and express a purpose, experience the connection with themselves and with others. Certainly, there is also evidence that as people
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encounter severe illness, spirituality increases [3]. Although clinical practice tends to neglect the spiritual dimension of the patient’s well-being and illness, growing evidence gathered from the past two decades shows how spirituality affects the patient’s well-being, understood not only from a physical point of view, but also from a mental one, as an inner state of equilibrium and serenity. The role of spirituality has been identified, in fact, as a key component in the process of psychological recovery. In particular, it has measurable effects on different domains, from satisfaction with care, medical decision-making and medical care outcomes, leading the medical system to respond constructively to patients’ spirituality as part of patient- centered care [4]. Therefore, despite spirituality being directly related to better health outcomes, long survival in transplant patients, life satisfaction and happiness, the responsible mechanisms remain controversial and their identification represents an exciting priority in research [5]. One of the factors involved could be psychological optimism reinforced by spiritual beliefs, as suggested by the longitudinal 4-year study run by Rovai and colleagues, on a sample of liver transplant patients, that demonstrated that spirituality, understood as the searching for God, was associated with survival as compared to counterpart that did not manifest this belief [6]. Another possible mechanism could be linked to a change in lifestyle induced by spiritual habits; in fact, evidence indicates how risky behaviour like smoking, alcoholism, and substance abuse are inversely related to spirituality. A study conducted on students in a large metropolitan area showed that spiritual factors were strongly associated with lower drug abuse, even after controlling for the relevant socio-demographic and educational variables [7]. The role of spirituality in addiction was also reflected upon in a study, which found that smoking and frequent binge drinking were negatively correlated with spirituality scores [8]. But, probably, the mediator mainly involved, both in healthy and illness conditions, could be increased in the positive emotions (forgiveness, love), at the expense of negative emotions (fear, depression, anxiety). A recent meta-analysis, which summarized the results of 147 independent investigations involving a total of 98,975 subjects on the association between spirituality and depressive symptoms, found that it is robustly associated with lower level of depressive symptoms. Usually, spirituality plays a prominent role in palliative care, in which one of the goals is the assistance of personal growth and psychological resilience in dealing with one’s health challenges, through non-verbal and non-cognitive ways. For this aim, many programs based on the mind-body relationship have been developed with the proved efficacy in reducing symptoms that patients commonly reported such as nausea, pain, and depression, making it easier for patients to achieve self-awareness. Although the main development field is in primary care, previous findings that link spirituality to lower arousal and stress responses, from psychological and physiological point of view, may provide valuable information on the development of individual protective factors over the course of life, both in the presence and absence of diseases. Therefore, this suggests how the spiritual approach to life is a key function not only in conditions of illness, but also in the context of prevention. However, the concept of “complementary” approaches in its spiritual dimension, has been
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difficult to accept for Western medical culture, also due to the lack of rigorous evidence that the traditional medical approach requires. We are often faced with a methodological inconsistency because CAM claims to be effective, despite not being supported by scientific results appreciated by our health system, and this makes it problematic to incorporate these approaches and programs into the Western healthcare system. One of the crucial aspects is that these programs do not lend themselves to the scientific method appreciated by Western medicine, very often the results are qualitatively linked to the patient’s perception and difficult to quantify with accurate clinical investigations. However, the rare negative effects of such techniques, additive to clinical practice, should be considered, especially when compared with the known side-effects observed with many traditional drug therapies. Regardless of the techniques and complementary protocols, the basis is the relationship of conscious acceptance, which patients must develop within themselves. Important concepts for increasing such an attitude are love, compassion and awareness. For this reason, many mind-body programs are founded on the “mindfulness- based” techniques or philosophy, especially because mindfulness is strongly related to compassion, and compassion is necessary for healing. Mindfulness meditation includes a group of meditative practices, including a mindfulness-based stress reduction (MBSR) protocol, that has received growing attention, due to the increase in results on beneficial neurobiological changes and clinical positive effects in pathological conditions and healthy subjects. Rooted in Theravada Buddhism and westernized in the 1970s by Jon Kabat-Zinn of the University of Massachusetts, MBSR combined mindfulness meditation with Hatha yoga. Its effectiveness, as documented by FMRI studies, psychological evaluation, and bio humoral essays, has been tested in different patient groups, including people with cancer, depression, psychosomatic and heart diseases [9]. MBSR consists of a method in training the mind, and thus the body, through a nonjudgmental approach, where the mind is considered as a mix of thoughts, experiences, expectations, emotions, perceptions, and fears. Individuals are stimulated to observe their thoughts and emotions, positive or negative, and their body stimuli, letting them go without judging or immersing themselves in them, living in the present moment. It is characterized by moment-to-moment awareness of perceptible mental states and processes, including physical sensations, perceptions, affective states, and thoughts. It is for this reason that mindfulness interventions induce changes in the brain network, activation of prefrontal cortex, associated with attention, concentration, and emotion regulation and neuroplasticity of white matter change involving the anterior cingulate cortex, related to self-regulation [10]. The development of an attitude of openness, acceptance, kindness, curiosity, and patience allow the human system to maintain balance despite being immersed in a constantly changing environment. This is in line with the new concept of health, seen as the perfect and continuous adaptation of an organism to its environment. Health is not a state, but a dynamic condition of equilibrium, based on the subject’s ability to interact with the environment in a positive way, while constantly changing. Balance becomes interaction between inside and outside. Health is therefore structured as a health-disease continuum in which
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the way of perceiving reality affects this link. However, the process of running down, in patient or healthy subjects, which may be due to excessive physical and mental effort, and which involves the inability to adapt, creating the substrate for the development of risk factors and diseases typical of the Western developed countries, is essentially linked to the fact that external demand exceeds internal resources. For this reason, the importance of a complementary approach based on mindfulness, which must be additive to traditional clinical practice, and not replace it, lies in the fact that the patient with practice, accepts that negative emotions, thoughts, and feelings related to disease, arise, but they also quickly pass and do not define one’s mind. This is possible as participants are encouraged to incorporate meditation in their daily life so that routine activities become a meditative practice and with time and practice, they reduce stress, anxiety, depression. An important aspect is that MBSR and mindfulness-based protocols in general, not only work as a treatment for patients, but also in a preventative way because it provides a new method of thinking and functioning, reducing risky behaviors such as smoking, drinking, sedentary lifestyle, and unhealthy eating, and thus decreasing the susceptibility to develop chronic degenerative diseases. A crucial aspect is to focus the mind on the physical reference, like breathing or posture, so that it cannot be occupied with distracting thoughts. Spirituality and mindfulness meditation are identified, in some cases, as altered states of awareness, in other words as a suspension of logical thought. The ability to focus and channel the mind, typical of meditation, but also of prayer, induces biochemical and physical changes in the body that change metabolism, heart rate, respiration, blood pressure and brain chemistry. Prayer, in particular, has been used in clinical settings as a method of stress and pain reduction. As shown by Bernardi’s study, reciting the Holy Mary, the repetitive vocal and mental prayer in Buddhism, or yoga mantras, leads respiratory rate to six breaths per minute, which is equivalent to a condition of relaxation and well-being [11]. With reference to yoga mantras, they are musically uplifting and spiritually significant, with a de-stressing effect. This approach that combines physical, psychological, and spiritual disciplines, giving people with an illness some degree of body control. Yoga is the fifth most common complementary therapy used, not only in adults, but also in children and youth, and it’s based on the merging of mind, body, and spirit through mindfulness of breathing and body postures in order to improve coping with stress and specific health conditions. As complementary intervention, the main positive effects are observed on the individuals who report emotional, mental, and behavioral health problems [12]. From yoga, and more specifically from the Pranayama yoga procedure, derives the techniques of controlled respiratory training, characterized by conscious slow and deep acts of breathing, providing benefits on well-being in healthy subjects and in patients with different kinds of diseases [13]. In this context, in recent studies conducted on chronic obstructive pulmonary disease patients and adolescent Fontan patients exposed to 3 months of controlled respiratory training, our group showed that this approach is effective in improving the quality of life and perception of well-being on these patient groups [14, 15]. Obviously, further studies will need to confirm the long-term clinical and psychological benefits of this
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holistic approach, but according to a patient-centered care point of view and the rule of complementary approach in medicine, the qualitative results obtained from the stories of the patients—“I was able to walk at a fast pace without breathing with my mouth, but only with my nose (Paolo)”, “In the morning I had the trouble even just talking (Angela)”, “Now, I’m in a good mood (Eugenio)”, emphasize the importance and necessity of these approaches in integrative healing modalities. All this leads us to highlight even more the need to propose a more “holistic” approach in clinical practice and more generally in patients with chronic diseases, in terms of “to cure” and “to care”. A patient with a chronic illness becomes a person with a need for much more attention and care, who over time is forced to limit their daily activities and social relationships. In line with a Humanistic Medicine point of view, taking care of a patient no longer means merely treating the illness by managing the symptoms, but it means taking care of the person as a whole: treating the illness, but also assessing how he or she lives with it, and the integrative and complementary approaches have just this purpose.
Discussion This chapter describes the best available evidence for a variety of complementary approaches and practices in patients, essentially based on mind-body interaction (Fig. 11.1). The scientific evidence varies in terms of quantity and quality, but generally is supportive of mind-body therapies and practices as being safe and potentially effective in healthy and illness conditions. However, there are many biases towards complementary and alternative practices that prevent total acceptance in the current medical field. One of the principal debates is that many practices are targeted towards individuals, rather than towards disease conditions (e.g., diabetes or heart failure), as compared to traditional clinical practices. Scientific evidence is enriched by a plethora of individual case studies, with positive qualitative outcomes rather than quantitative, although there are a number of methodological limitations in the interpretation of these results. Thanks to high levels of consumer satisfaction, health care systems and providers are encouraged to facilitate an open dialog with their patients about the use of complementary therapies as additive, and to become familiar with mind-body practices to improve mood, behavior, and quality of life. Traditional medicine should incorporate innovative ways of healing patients that are equally ambitious as any new technology that is offered, when proposed by P4 medicine. The personalization of the medical approach, as proposed by 4P medicine or precision medicine, cannot ignore the knowledge of the patient’s emotions and other subjective aspects of the patient’s experience. This is the importance and the potential advantage and additional factor of complementary approaches compared to traditional ones. For this reason, much of the limitations of integrative and complementary approaches will be overcome if the different perspectives of patients and physicians can change, regardless of studies and data evidence. Given the
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Complementary approach
Mind Body Spirituality
Clinical data Biochemical markers
Lifestyle habits Psychosocial factors
Physiological signals
Environmental data
Genetic predisposition
Perception/Resilience
PATIENT CARE
DISEASE CURE
Spiritual healing - Meditation Yoga - Relaxation
Empowerment & Awareness
Patient-centered care
Fig. 11.1 Complementary approaches and multiple levels of intervention
significant and growing need for comprehensive evidence-based healthcare that addresses mind, body, and spirit, in health promotion and prevention, acute care, chronic disease management, palliative and pediatric care fields, the medical community is obliged to evaluate the complementary approaches as a new way of patient-centered care and healing.
References 1. Flores M, Glusman G, Brogaard K, Price ND, Hood L. P4 medicine: how systems medicine will transform the healthcare sector and society. Per Med. 2013;10:565–76. 2. Zollman C, Vickers A, ABC of complementary medicine. Complementary medicine and the patient. BMJ. 1999;319:1486–9. 3. Atchley RC. Spirituality and aging. Baltimore: Johns Hopkins University Press; 2009. 4. Mishra SK, Togneri E, Tripathi B, Trikamji B. Spirituality and religiosity and its role in health and diseases. J Relig Health. 2017;56:1282–301. 5. Seeman TE, Dubin LF, Seeman M. Religiosity/spirituality and health. A critical review of the evidence for biological pathways. Am Psychol. 2003;58:53–63.
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6. Bonaguidi F, Michelassi C, Filipponi F, Rovai D. Religiosity associated with prolonged survival in liver transplant recipients. Liver Transpl. 2010;16:1158–63. 7. Moreira-Almeida A, Koenig HG. Retaining the meaning of the words religiousness and spirituality: a commentary on the WHOQOL SRPB group’s “a cross-cultural study of spirituality, religion, and personal beliefs as components of quality of life” (62: 6, 2005, 1486–1497). Soc Sci Med. 2006;63(4):843–5. 8. Leigh J, Bowen S, Marlatt GA. Spirituality, mindfulness and substance abuse. Addict Behav. 2005;30(7):1335–41. 9. Ludwig DS, Kabat-Zinn J. Mindfulness in medicine. J Am Med Assoc. 2008;300:1350–2. 10. Cahn BR, Polich J. Meditation states and traits: EEG, ERP, and neuroimaging studies. Psychol Bull. 2006;132:180–211. 11. Bernardi L, Sleight P, Bandinelli G, Cencetti S, Fattorini L, Wdowczyc-Szulc J, Lagi A. Effect of rosary prayer and yoga mantras on autonomic cardiovascular rhythms: comparative study. BMJ. 2001;323:1446–9. 12. Section on Integrative Medicine. Mind-body therapies in children and youth. Pediatrics. 2016;138:e20161896. 13. Brown RP, Gerbarg PL. Yoga breathing, meditation, and longevity. Ann N Y Acad Sci. 2009;1172:54–62. 14. Ait Ali L, Pingitore A, Piaggi P, Brucini F, Passera M, Marotta M, Cadoni A, Passino C, Catapano G, Festa P. Respiratory training late after Fontan intervention: impact on cardiorespiratory performance. Pediatr Cardiol. 2018;39:695–704. 15. Mastorci F, Mannucci F, Lazzeri MFL, Passera M, Brucini F, Pavlickova I, Pingitore A, Catapano G. A controlled respiratory training to improve quality of life and well-being perception in chronic obstructive pulmonary disease patients. Biomed Res Clin Pract. 2021;6 https:// doi.org/10.15761/BRCP.1000218.
Chapter 12
Human Complexity: A Symphony of Vital Rhythms Paolo Grigolini
Introduction The title of this book is the same as that of a book written by Robinson in 1939 [1]. The time lapse of 82 years between the two books is marked by the impressive achievements of complexity science in the last 20 years. The title adopted by Robinson in 1939 suggests that health care providers must rest on inter-disciplinarity namely, in his case, on the interaction between medicine, sociology and psychology. Complexity science can be interpreted as the science of inter-disciplinarity and it also addresses the ambitious goal of shedding light onto the origin of consciousness, thereby establishing tools, both technical and conceptual, for a successful accomplishment of “the patient as a person” project. Due to the fast progress being made by the researchers in the field of complexity the term inter-disciplinarity is becoming increasingly inadequate to define this field of research, since this emerging science involves also a philosophical and theological level, if we take into account that for patients at a terminal level, bioethics and end of life issues are involved. The research project on the patient as a person requires the adoption of a “trans-disciplinarity” perspective. What is the role of Physics in giving beneficial contributions to this ambitious project? The main purpose of this chapter is to outline the new physics that, in my opinion, may help the health providers in realizing their ambitious project of taking care rather than curing a patient in need of their help. The term “new physics” is dictated by my attempt in defining the role of researchers who began working for Science as traditional physicists and are becoming aware of the inadequacy of the current physics to address the challenging issue of consciousness emergency. Which are the
P. Grigolini (*) Center for Nonlinear Science, University of North Texas, Denton, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Pingitore, A. M. Iacono (eds.), The Patient as a Person, New Paradigms in Healthcare, https://doi.org/10.1007/978-3-031-23852-9_12
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main ingredients of traditional physics that need to be maintained in the trans- disciplinary research work to give beneficial contributions to “the patient as a person” project? I plan to answer this important question at the end of this chapter, after illustrating the main results obtained by my group over the past 15 years on issues closely related to “the patient as a person” project. The subtitle of the very popular book of Giulio Tononi, “A Voyage from the Brain to the Soul” [2] is attractive but his adoption of the word “soul” raises the big question of the connection between religion and science, since the word “soul” has a well-known religious connotation. This issue was widely discussed [3] where the conjecture was made of a connection of “soul” with the group mind of McDougall [4]. This connection suggests an interpretation of Jung’s unconscious as reflecting the human society whereby a single person is a member, thereby leading us to believe that curing a person requires that the health providers should not ignore the society that contributed to the creation of the “soul” of that person. The concept of group mind implies that a social process of self-organization exists and that another process of transmission of information from the group mind to the mind of a person occurs, thereby shifting back in time from 1939 to 1920 “the patient as a person” concept. This is discussed in section “The Subconscious Mind”. The action of a mother and father transfers information from their human society, a system at criticality, into another complex system at criticality, the brain of their baby. Criticality is explained in section “Self-Organization of Rhythms”. Criticality is a condition reminiscent of the beautiful metaphor of Singer, who compares the human brain to an orchestra playing music with no need of an orchestra director [5]. The next sections of this chapter, from section “Autonomic Neuropathy” to final section “Conclusions”, illustrate in more detail how I propose to use the concept of group mind to contribute to “the patient as a person” project.
The Subconscious Mind Figures 12.1 and 12.2 illustrate through intuitive metaphors how to use the concept of group mind originally proposed by McDougall. The readers can find more details in the work of [3]. As already done in [3] it is convenient to let the readers know that in the first 20 pages of Chap. I of his book [4] McDougall, replying to Maciver, another psychologist, writes: “…the environment which influences the individual in his life as a member of an organized group is neither the sum of his fellow members as individuals, nor is it something that has other than a mental existence. It is the organized group as such, which exists only or chiefly in the persons of those composing it, but which does not exist in the mind of anyone of them, and which operates upon each so powerfully just because it is something indefinitely greater, more powerful, more comprehensive than the mere sum of those individuals.”
12 Human Complexity: A Symphony of Vital Rhythms Fig. 12.1 Traditional concept of soul
From one body
133 To another body
Wllliam James, The Theory of the Soul
Mind = Soul = COGNITION
INTERACTING mind-body interaction
NEURONS
To heaven
To hell
Fig. 12.2 Social mind
William McDougall The Group Mind, 1921
Transport of information from a Social to a Neurophysiological Complex Network
INTERACTING NEURONS
dad
mind mom
This statement should be interpreted as the hypothesis that a form of social self- organization through the minds of the individuals of a given society which generates a global mind, of which the single individuals are not aware, thereby implying the existence of a subconscious mind of a social nature, does exist, and is in a close connection with the collective unconscious of Jung [6]. This leads us to explore the “the patient as a person” concept not only emphasizing the influence of the social mind of his/her behavior, but also proposing an interpretation of “soul” distinctly different from the traditional concept of “soul”. Figure 12.1 represents the religious concept of mind. For Roman Catholic Christianity the soul is imbedded by God into the body and it survives the death of the body. At the end of life it may go or to heaven or to hell, as a reward for the good or a punishment for those that led a sinful life. According to oriental religions the soul can move from one body to another. William James, the founder of American Psychology, devoted Chap. 10 of his book of Ref. [7] to “The Theory of the Soul” and he wrote “My final conclusion, then, about the substantial Soul is that it explains nothing and guarantees nothing. Its
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successive thoughts are the only intelligible and verifiable things about it, and definitely to ascertain the correlations of these with brain-processes is as much as psychology can empirically do. From the metaphysical point of view, it is true that one may claim that the correlations have a rational ground; and if the word Soul could be taken to mean merely some such vague problematic ground, it would be unobjectionable. But the trouble is that it professes to give the ground in positive terms of a very dubiously credible sort. I therefore feel entirely free to discard the word Soul from the rest of this book. If I ever use it, it will be in the vaguest and most popular way. The reader who finds any comfort in the idea of the Soul, is however, perfectly free to continue to believe in it; for our reasonings have not established the non- existence of the Soul; they have only proved its superfluity for scientific purposes”. It is not the scope of this paper to discuss whether or not William James shared some Buddhist thoughts. I limit myself to stress that the term “Soul” should not be used for a scientific investigation. Figure 12.2 has the main goal of explaining to the readers with the help of metaphors, as done in Fig. 12.1, the importance of two important tenets of complexity: criticality and the complexity matching phenomenon. It is evident that the group mind of McDougall implies the existence of a process of self-organization. The units of the self-organizing systems are human beings according to the group mind of McDougall, and neurons for the brain. The transport of information from one complex system to another becomes maximally efficient when both systems are at criticality and share the same criticality-induced complexity. This phenomenon is called complexity matching. To transmit information from one complex system A at criticality to another complex system B at criticality, it is enough that a small number of units of the system A interact with system B [3]. The parents of a new born baby are two units of the system A, which is a self-organized human society characterized by the group mind, hypothesized by McDougall. They talk to the baby and as a result of this interaction they activate the consciousness of the baby. This process of transmission of information has also the effect, in line with McDougall suggestions, of transmitting to the baby the group mind. The action of a father as a man is equivalent to that of God in Fig. 12.1. The mother and father imbed the “soul” into the brain of their child. It is important to stress the connection between group mind and the unconscious. In accordance with McDougall, the single individual of the surrounding society does not have a conscious perception of their group mind that, however, exerts a strong influence on their behavior. This leads me to make some comments on the Jung archetypes. As illustrated in the book of Lindorff [8], describing the interaction between a giant in Physics and a giant in Psychology, there should be a surprising connection between quantum mechanics and psychology, a view that is shared by a wide group of scientists advocating the fundamental role of quantum mechanics to explain consciousness. An example of this approach to subconscious is given by Wallace [9]. The transmission of archetypes across many generations is explained as an eternal property of mind reflecting the eternal nature of physical laws, and quantum mechanics is used to explain this eternal property of mind.
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Fig. 12.3 Orpheus replacing Jesus
I want to propose a different interpretation based on Fig. 12.3. This figure shows an early Christian painting from the ceiling of the Domitilla catacomb in Rome, third century AD. In the central panel, where a symbol of Christ might have been expected, the legendary founder of the Orphic mysteries appears, the pagan poet Orpheus, quelling animals of the wilderness with the magic of his lyre and song. This indicates that the archetypes undergo a historical evolution. The Orpheus image at the center of a circle representing events of the Gospel, thereby replacing the expected image of Jesus is a sign that the social mind evolves in time reflecting in this case the transition from paganism to Christianity. The main goal of this chapter is to illustrate the “patient as a person” issue on the basis of the influence that the social mind exerts on the brain of the patient.
Self-Organization of Rhythms The metaphor proposed by Singer in 2005 [5] was interpreted by many researchers as being equivalent to stating that the brain function is a process of self-organization. This interpretation is confirmed to be correct by Singer himself in the later work of 2009 [10], where he describes the brain function as resulting from the synchronization of many parallel oscillatory activities, adopting explicitly the term “self- organization”. The orchestra metaphor is very attractive because it fits the conception of the brain as the representation of the vital rhythms of all biological processes and
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makes it easier to understand why music can be used as a convenient therapy to cure diseases as Parkinson and Alzheimer. Self-organization however is a more difficult property to describe by means of the orchestra metaphor if we do not supplement it with the statement that it does not have any conductor, despite the impression that it is a non-realistic statement. The conductor-less orchestra is a concept that is in conflict with the widely accepted conviction that social organization requires leadership. This is the reason why the Templeton foundation organized a competition between Dehane and Tononi on the origin of consciousness [11]. At first sight the proposal of Tononi [2] seems to be compatible with self-organization while Dehane [12] advocates an image where the frontal area of the brain seems to play the role of the orchestra director. Both examples however lack the social component origin of consciousness that I have emphasized in section “The Subconscious Mind”. This issue will be discussed in later sections as a further criticism to Templeton’s project [11]. Here I want stress the term “rhythm”, which is a musical term related to the orchestra metaphor. Strogatz [13] in his obituaries on Arthur T. Winfree, the author of the book [14], pointed out that Winfree had addressed the very important question of how thousands of neurons or fireflies or crickets may fire or flash or chirp at the same time. This synchronization phenomenon is an extreme case of self- organization that my group has addressed using the self-organization tools.
Crucial Events The definition of crucial events rests on the occurrence of rare events. The complex system is interpreted as a machine undergoing failures, and the occurrence of a failure activates an instantaneous repair process or instantaneous rejuvenation. The time distance between the occurrence times of two consecutive crucial events is characterized by a waiting distribution density ψ(τ) with the structure of an inverse power law:
ψ ( τ) = ∞
1 . τµ
(12.1)
The inverse power law index μ is a real number larger than 1. The definition of crucial events requires that
1 < µ < 3.
(12.2)
It is important to notice that the restriction of μ to μ μ > 1, and δ=
if 2 2
4−µ 2
1
ORDINARY STATISTICAL PHYSICS
δ=µ−1
δ 0.5
1 δ=µ − 1
1
1.5
2
3
µ However, to show the importance of that goal, we discuss first how to get δ = (µ-1)/2 for µ < 2 and d = 1/2 for µ > 2 It is evident that this rule is less powerful than the rule illustrated by the black lines because it 1 interprets as conventional statistics also the region 2 < mu< 3 which is the generator of Levy diffusion
Fig. 12.4 The singularity of the brain
authors convert a fluctuation ξ(t) into a diffusion process as done by Eq. (12.3). This diffusional trajectory yields the scaling of Eq. (12.4) with no crucial events. I stressed that the crucial events can be interpreted as unpredictable failure- rejuvenation events. Fractional Brownian Motion (FBM) is characterized by either persistent or anti-persistent fluctuations yielding a scaling that is denoted by the symbol H rather than δ. Namely, Eq. (12.4) is replaced by
x (t ) ∞ tH ,
(12.8)
with
0 < H < 1.
(12.9)
The interval 1/2