Ethics in Intensive Care Medicine (Lessons from the ICU) 3031293894, 9783031293894

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Lessons from the ICU Under the Auspices of the European Society of Intensive Care Medicine Series Editors: Maurizio Cecconi · Daniel De Backer

Andrej Michalsen Nicholas Sadovnikoff Jozef Kesecioglu   Editors

Ethics in Intensive Care Medicine

Lessons from the ICU Under the Auspices of the European Society of Intensive Care Medicine Series Editors Maurizio Cecconi, Head Dept Anesthesia and ICU Humanitas Research Hospital Head Dept Anesthesia and ICU Rozzano, Milano, Milano, Italy Daniel De Backer, CHIREC Hospitals Université Libre de Bruxelles Brussels, Belgium

Lessons from the ICU is a Book Series published by Springer under the auspices of the European Society of Intensive Care Medicine (ESICM). The aim of the Series is to provide focused and state-of-the-art reviews of central topics in Intensive Care. Ultimately, its mission is to transfer the latest knowledge to the bedside in order to improve patient outcomes. Accordingly, the ESICM has also developed Lessons from the ICU with the vision or providing the best resources for everyone working in Intensive Care. Each volume presents a comprehensive review of topical issues in Intensive Care. The volumes are intended to cover the majority of aspects that intensive care professionals are likely to encounter in the course of their career. Books offer an excellent guide for residents who are new to the ICU, and for allied professionals, senior consultants as well as nurses and allied healthcare professionals. The chapters are organized in a way that allows the reader to quickly familiarize or reacquaint themselves with the pathophysiological background before moving on to diagnosis and treatment. Each chapter includes a list of Take Home Messages, as well as practical examples that apply theoretical knowledge in real clinical scenarios. Each volume in the Series is edited by international Key Opinion Leaders in Intensive Care, and each chapter is written by experts in the field. In summary, this Series represents a valuable contribution to fill the gap in the current Intensive Care literature by providing top-quality literature reviews that can be easily digested and used at the bedside to improve patient outcomes. **Indexed in Scopus** Corresponding Series Editors and responsible for new book proposals: Maurizio Cecconi @ [email protected] Daniel De Backer @ [email protected] More information about this series at https://link.springer.com/bookseries/15582

Andrej Michalsen • Nicholas Sadovnikoff • Jozef Kesecioglu Editors

Ethics in Intensive Care Medicine

Editors

Andrej Michalsen Department of Anesthesiology, Critical Care, Emergency Medicine and Pain Therapy Klinikum Konstanz Konstanz, Germany

Nicholas Sadovnikoff Department of Anesthesiology, Critical Care and Pain Medicine St. Elizabeth’s Medical Center Brighton, MA, USA

Jozef Kesecioglu

Department of Intensive Care Medicine University Medical Center Utrecht Utrecht, The Netherlands

ISSN 2522-5928     ISSN 2522-5936 (electronic) Lessons from the ICU ISBN 978-3-031-29389-4    ISBN 978-3-031-29390-0 (eBook) https://doi.org/10.1007/978-3-031-29390-0 © European Society of Intensive Care Medicine 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

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Foreword Hundreds of thousands of physicians, nurses, and allied healthcare providers around the world care for critically ill patients every day. They deliver patient- and family-­ centred treatment, often providing the only hope for the critically ill patient to have a favourable outcome. Over the last seven decades, intensive care medicine, born in a hurry during the poliomyelitis pandemic of the 1950s, has emerged as a highly evolved and specialized realm of care, delivered by compassionate and committed interdisciplinary teams, and devoted to resuscitating patients from severe illness and restoring them to a quality of life they value. Ethical issues and challenges are inherent to the practice of intensive care. Ethical matters have fuelled an abundant literature and inspired extensive research. Mixed-­ methodology studies have influenced clinical research and even guided changes in clinical trials. Specialists and researchers have sought to better understand how to improve their ability to address ethical matters and to transfer their experience and knowledge to everyone engaged in the care of patients in intensive care units (ICUs). This book is an outstanding effort from Andrej Michalsen, Nicholas Sadovnikoff, and Jozef Kesecioglu. They should be commended for having assembled experts from all over the world to work together to provide a comprehensive and qualitative overview of ethical questions that face every ICU clinician. The contributions in this book are up-to-date, well-argued, and based on sound ethical grounding. I also appreciate the freedom left to the reader to consider alternative arguments and to choose between different conceptual models. The references listed also allow readers to extend their knowledge by a wider exploration into a much broader repertoire beyond medicine, sometimes calling upon literature from social sciences, psychology, and philosophy. By offering to the readers such a wide perspective on the ethical issues raised by the care of the critically ill, Drs. Michalsen, Sadovnikoff, and Kesecioglu address a major need by helping clinicians and researchers concert their efforts to better support ICU specialists and help them navigate ethical challenges. I heartily congratulate the authors and the editors for this accomplishment that will undoubtedly become a highly consulted reference work in the field. Elie Azoulay

President, European Society of Intensive Care Medicine Paris, France

Preface One of the oldest documents binding the physicians to medical ethics is the oath attributed to Hippocrates. The oath, mainly focusing on the best interests of the patients, has laid the fundaments for the modern ethical principles, such as beneficence, non-maleficence, and confidentiality. Many centuries later, in 1803, an English physician, Thomas Percival, was the first to use the term “medical ethics” in his book Medical Ethics; or, a Code of Institutes and Precepts, Adapted to the Professional Conduct of Physicians and Surgeons. This book formulated basic responsibilities of the physicians to their patients and colleagues for many future years. The 1952 Copenhagen polio epidemic has played a crucial role in the development of intensive care medicine. Intensive care came into existence largely through artificial respiration, and it improved as anaesthesiologists and later other medical specialists used their equipment and techniques for treating critically ill patients so they could survive. Thus, a new speciality was created. This advancement, though, was soon confronted with new ethical concerns and considerations. Patients with no chance of long-term survival could be kept alive with advanced equipment. In 1957, Dr. Bruno Haid, head of the Anesthesia Section at the University of Innsbruck, submitted questions to Pope Pius XII on medical moral regarding such treatment. Amongst others, his questions were, “Does the physician have the right, or is he under the obligation to use modern artificial respiration equipment in all cases, even those which, in the doctor’s judgment, are completely hopeless?”; and “Does one have the right, or is one under obligation to remove the artificial respiration apparatus when, after several days, the state of deep unconsciousness does not improve and, upon removal of the apparatus, blood circulation will stop within a few minutes?” To answer these questions, the Pope convened an international congress of anaesthesiologists and, subsequently, declared that neither physicians nor families were obliged to continue aggressive treatment of patients who would not benefit from therapy and whose prognosis was death. In his opinion, withdrawal of life-sustaining treatment was, in those cases, morally acceptable (L’Osservatore Romano, November 25–26, 1957). Many years have passed since Pope Pius XII made these clear statements. However, we still see today that similar uncertainties, concerning a number of issues on medical ethics in intensive care medicine, persist worldwide. In this book, we have covered multiple aspects of ethics in intensive care settings. The focus of Part I is the “principles of clinical ethics”. In this part, common ethical frameworks and theories, such as utilitarianism and principlism, are reviewed. Beneficence, non-maleficence, the respect for the patient’s autonomy, and distributive justice are expounded as the four ethical principles widely accepted throughout the world. Furthermore, the definition of the “intensive care patient” as well as the importance of medical considerations and medical expertise regarding admittance criteria to an intensive care unit (ICU) are discussed.

VII Preface

Part II covers several aspects of decision-making in intensive care medicine. Important issues are interprofessional and interdisciplinary communication and consensus building as to important treatment decisions. Even more important is conveying these decisions to the patients and their families. The challenges of involving patients and/or family members in shared decision-making in the ICU are deliberated upon and recommendations are made as to its implementation. Lastly, the impact of the cultural diversity in our modern societies on the quality of care as well as on healthcare workers subsequently perceiving moral distress and burnout is described. Experiencing treatment in an ICU is stressful and psychologically traumatic for the patient and the family. Besides, healthcare workers in ICUs can also be considerably affected by the patients’ suffering, especially if they think that the treatment is disproportional. Part III mainly concentrates on the extent of intensive care treatment and the limitations of life-sustaining therapies, based on the patient’s wishes and the prognoses regarding mortality, morbidity, and quality of life. The importance of individualized decision-making is accentuated. Lastly, the necessity of integrating palliative care into intensive care medicine is discussed, emphasizing the need of an adequate education programme for ICU clinicians. Intensive care treatment ideally aims at restoring the patient’s health—or at least at reaching their status quo ante. While this may not always be attainable, an acceptable quality of life should be sustained after their hospital discharge. At the same time, though, healthcare workers in ICUs are cautious not to apply disproportional care and treatment, to avoid unnecessary suffering of the patients, and to avoid moral distress within the team. Consistent decisions can only be made in a healthy working climate where open and honest dialogue and mutual respect and trust within the interprofessional team of nurses and physicians are daily practice. Next to this, Part IV also mentions the legal aspects in clinical ethics which is a challenging issue due to big legal differences between nations. Lastly, this section briefly explains ethical duties and the shift from deontology to utilitarianism during major health system crises. Part V discusses the quest for certainty in medical care as to diagnoses, prognoses, and the outcomes achievable. However, due to a number of reasons, discussed in this part, complete certainty cannot be achieved. Rather, uncertainty should be viewed as an integral component of clinicians’ decision-making. Intensive care medicine mainly consists of navigating complex medical situations—medically, logistically, and ethically. It is possible to reach a consensus or make general recommendations in intensive care treatment practices, for instance regarding mechanical ventilation, haemodynamic stabilization, or overcoming acute kidney injury within the scope of published data and the evidence available. It is not uncommon that such recommendations are accepted and applied worldwide. Ethics in intensive care medicine, however, differs from other realms vital to our professional practice: valid data may or may not be available—and even if available, not always applicable due to ethnic, social, cultural, and legal differences. We might

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Preface

allegedly discern right and wrong, but our assessment will likely be based on our own values—which may not align with those of our patients or our team. Nevertheless, we gladly accepted the challenge of editing and partly authoring this book, Ethics in Intensive Care Medicine. Most importantly, we hope that it will help colleagues around the world to improve their ethical understanding and reasoning in order to meet their daily challenge of rendering ethically appropriate care to each individual patient of theirs. Andrej Michalsen

Konstanz, Germany Nicholas Sadovnikoff

Boston, MA, USA Jozef Kesecioglu

Utrecht, The Netherlands

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Acknowledgements We would like to acknowledge the remarkable efforts of all authors contributing to this book who despite persistent occupational strain gave their expertise, time, and energy to complete this volume. We sincerely hope that it will be a valuable source of insight into principles and practices as well as current challenges regarding ethics in intensive care medicine. We are also indebted to Mr. Andrea Ridolfi from Springer without whose continuous support this work would not have been possible. Grazie mille! Personally, I would like to acknowledge the influential contribution of my distinguished mentors in the realm of clinical ethics: Charles L. Sprung, Robert Truog, Randy Curtis†, and Uwe Janssens—without their guardianship I would not have been able to encompass the field to the present degree. I am also truly indebted to my wife, Joanne Vincenten, PhD, and our daughter Anna for their humour, patience, and encouragement regarding my working on this volume. AM I would like to acknowledge the primary contributors to my education in the realm of medical ethics: Mildred Solomon, who has been a guiding light since I was her fellow in 2008–9, Robert Truog, whose incisive thinking has always stood as an example to emulate, and Martha Jurchak whose tutelage in clinical ethics was essential to my development as an ethics consultant. I am also deeply indebted to my wife, Dr. Marcie Rubin, who has humoured my willingness to take on new projects with aplomb, and I would like to dedicate this volume to her as well as to my three children, Derek, Fredericka, and Sophie. NS Andrej Michalsen

Konstanz, Germany Nicholas Sadovnikoff

Boston, MA, USA Jozef Kesecioglu

Utrecht, The Netherlands

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Contents I 1

Principles of Clinical Ethics in Intensive Care Medicine Clinical Ethics and Ethical Principles................................................................................. 3 Aimee B. Milliken and Nicholas Sadovnikoff

1.1 Introduction........................................................................................................................................... 4 1.2 Ethical Theory: An Overview............................................................................................................ 4 1.2.1 Utilitarianism..................................................................................................................................................4 1.2.2 Deontology....................................................................................................................................................5 1.2.3 Virtue Ethics...................................................................................................................................................5 1.2.4 Narrative Ethics.............................................................................................................................................6 1.3 Principlism.............................................................................................................................................. 6 1.3.1 Beneficence....................................................................................................................................................7 1.3.2 Non-maleficence..........................................................................................................................................7 1.3.3 Distributive Justice......................................................................................................................................8 1.3.4 Autonomy.......................................................................................................................................................8 1.3.5 Limitations to Principlism..........................................................................................................................9 References......................................................................................................................................................10 2

The Two Pillars of Intensive Care Medicine (I): Medical Indication............... 13 Armand Girbes

2.1 2.2 2.3 2.4 2.5 2.6 2.7 2.8 2.9

Introduction........................................................................................................................................... 14 Definition of Intensive Care and Intensive Care Patient......................................................... 15 Criteria to Admit a Patient................................................................................................................. 16 Scoring Systems Regarding the Severity of Disease................................................................ 18 The Decision: To Admit or Not to Admit....................................................................................... 18 Exceptional Situations to Admit a Patient................................................................................... 19 Derogatory Reasons to Admit or Not to Admit.......................................................................... 19 Consequences of Admitting a Patient........................................................................................... 20 Consequences of Not Admitting a Patient.................................................................................. 21 References......................................................................................................................................................22

3

The Two Pillars of Intensive Care Medicine (II): The Patient’s Wishes and Consent..................................................................................................................... 25 Aimee B. Milliken and Nicholas Sadovnikoff

3.1 Introduction........................................................................................................................................... 26 3.2 Respect for Autonomy and Informed Consent.......................................................................... 26 3.2.1 Decision-Making Capacity........................................................................................................................27 3.2.2 Voluntariness.................................................................................................................................................27 3.3 Paternalism/Parentalism and Shared Decision-Making......................................................... 28 References......................................................................................................................................................29

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Contents

II Decision-making 4

Shared Decision-Making (I): Within the Interprofessional Team.................... 33 Andrej Michalsen and Hanne Irene Jensen

4.1 4.2 4.3 4.4 4.5 4.6 5

Introduction........................................................................................................................................... 34 Clinical Case Example......................................................................................................................... 35 Interprofessional Shared Decision-Making: Definition and Scope of Application.................................................................................................................. 35 Recommendations............................................................................................................................... 38 Clinical Case Example: Continued.................................................................................................. 40 Special Circumstances........................................................................................................................ 40 References......................................................................................................................................................41

Shared Decision-Making (II): With Patients and Families.................................... 45 Nancy Kentish-Barnes, Julie Benbenishty, and Monika C. Kerckhoffs

Introduction........................................................................................................................................... 46 The Relevance of Shared Decision-Making................................................................................. 46 Shared Decision-Making in Critically Ill Patients at Time of ICU Admission..................... 47 Families in the ICU: Shared Decision-Making in a Context of High Emotional Distress............................................................................................................................... 47 5.5 Impact of Shared Decision-Making on Families’ Well-Being................................................. 48 5.6 Team-Centered Challenges............................................................................................................... 49 5.7 Strategies to Improve Shared Decision-Making........................................................................ 50 5.7.1 Frameworks and Recommendations....................................................................................................50 5.7.2 Family Conferences: The VALUE Approach.........................................................................................51 5.7.3 Support for the Family................................................................................................................................52 5.7.4 Dealing with Discordance and Conflict................................................................................................53 5.7.5 Mediation........................................................................................................................................................53 References......................................................................................................................................................54 5.1 5.2 5.3 5.4

6

The Significance of Cultural Diversity.............................................................................. 57 Victoria Metaxa, E. Wesley Ely, and Mervyn Mer

6.1 Introduction........................................................................................................................................... 58 6.2 Multiculturalism and Cultural Diversity....................................................................................... 59 6.3 Impact of Culture in Critical Care.................................................................................................... 61 6.3.1 Death and Dying..........................................................................................................................................61 6.3.2 Communication............................................................................................................................................63 6.3.3 Staff Well-being.............................................................................................................................................64 References......................................................................................................................................................66

III

Goal of Therapy and Extent of Treatment

7

Life-Sustaining Therapies: Indication, Prognostication, and the Patient’s Wishes............................................................................................................ 71 Monika C. Kerckhoffs, Jochen Dutzmann, Aimee B. Milliken, and Jozef Kesecioglu

7.1

Introduction........................................................................................................................................... 72

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7.2 Prognostication.................................................................................................................................... 73 7.2.1 Prognostication of Morbidity and Mortality During ICU Treatment..........................................73 7.2.2 Prognostication of Morbidity and Mortality After Discharge from the ICU............................74 7.3 Goal-Concordant Care........................................................................................................................ 74 7.4 Shared Decision-Making.................................................................................................................... 75 7.5 Appropriateness of Care.................................................................................................................... 76 7.5.1 Before ICU Admission: Advance Care Planning.................................................................................76 7.5.2 During ICU Admission................................................................................................................................76 7.5.3 Substituted Judgment...............................................................................................................................77 References......................................................................................................................................................78 8

Prinicples and Practice of Limiting Life-Sustaining Therapies........................ 81 Andrej Michalsen, Jan Bakker, Charles L. Sprung, Sabine Reimund, and Armand Girbes

8.1 Introduction........................................................................................................................................... 82 8.2 Epidemiology........................................................................................................................................ 82 8.3 Reasons for Limiting Life-Sustaining Therapies........................................................................ 82 8.4 Legal Issues............................................................................................................................................ 84 8.5 Categories of Limitation.................................................................................................................... 84 8.5.1 Withholding, Withdrawing, and Active Shortening of the Dying Process...............................84 8.5.2 Time-Limited Trials......................................................................................................................................85 8.6 Challenges Regarding Limiting Life-Sustaining Therapies.................................................... 86 8.7 Implementation of Limitations....................................................................................................... 88 8.7.1 Decision-Making and Communication................................................................................................88 8.7.2 Patients and Families..................................................................................................................................88 8.7.3 Limitation of Invasive Treatments and Symptom Control.............................................................89 References......................................................................................................................................................91 9

Focus Topic: Decision-­Making Regarding Resuscitation from Cardiac Arrest in the ICU............................................................................................... 95 Jochen Dutzmann, Gavin M. Joynt, Carole Boulanger, Jan Bakker, and Nicholas Sadovnikoff

9.1 Introduction........................................................................................................................................... 96 9.2 Ethical Principles in the Context of Resuscitation in the ICU................................................ 97 9.2.1 (Distributive) Justice....................................................................................................................................97 9.2.2 Beneficence, Non-maleficence, and Autonomy................................................................................97 9.3 Withholding or Terminating Resuscitative Attempts.............................................................. 99 9.3.1 “Slow Codes”..................................................................................................................................................99 9.3.2 Do Not Attempt Resuscitation (DNAR) Orders..................................................................................100 9.3.3 Unilateral Physician Imposed DNAR Orders.......................................................................................101 9.4 Special Challenges: Extracorporeal Cardiopulmonary Resuscitation................................ 102 9.5 Communication of Fatal and Non-fatal Cardiac Arrest in the ICU....................................... 103 References......................................................................................................................................................104

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Contents

10

Palliative Care in Intensive Care Units............................................................................. 107 Ann L. Jennerich, Victoria Metaxa, Kateřina Rusinová, and Jozef Kesecioglu

10.1 Introduction........................................................................................................................................... 108 10.2 The Role of Palliative Care in the ICU............................................................................................. 109 10.2.1 Communication............................................................................................................................................109 10.2.2 Emotional, Psychological, and Spiritual Support..............................................................................109 10.2.3 Symptom Management.............................................................................................................................110 10.2.4 Involving Palliative Care Specialists in the ICU..................................................................................111 10.3 Implementing Palliative Care Principles in the ICU.................................................................. 111 10.4 Barriers to Palliative Care in the ICU.............................................................................................. 112 10.5 Future Directions.................................................................................................................................. 114 References......................................................................................................................................................116

IV

Appropriateness of Care

11

Ethical Climate and Proportionate Care......................................................................... 121 Bo Van den Bulcke and Hanne Irene Jensen

11.1 Introduction........................................................................................................................................... 122 11.2 Disproportionate Care and Ethical Climate................................................................................. 122 11.2.1 How Can “Ethical Decision-Making (EDM) Climate” in the ICU Be Conceptualized and Measured?.......................................................................................................123 11.2.2 Does the Quality of the Ethical Climate in the ICU Improve the Identification of Patients Receiving Disproportionate Care and Have an Impact on Patient Outcomes?................................................................................................................................125 11.2.3 What Is the Relationship Between the Quality of the Ethical Climate in the ICU and Intent to Leave Their Jobs Among ICU Clinicians?..............................................126 11.2.4 The Importance of the Ethical Climate in Times of Crises.............................................................127 11.3 Future Perspectives............................................................................................................................. 127 References......................................................................................................................................................128 12

Clinical Ethics and the Law...................................................................................................... 131 Marjel van Dam, Jozef Kesecioglu, Gunnar Duttge, E. Wesley Ely, Charles L. Sprung, and Aimee B. Milliken

12.1 Introduction........................................................................................................................................... 132 12.2 Patients’ Rights...................................................................................................................................... 133 12.3 Physicians’ Rights................................................................................................................................. 134 12.4 Core Ethical Matters and Relevant Legal Considerations....................................................... 134 12.4.1 Sanctity of Life...............................................................................................................................................134 12.4.2 Status of Legal Representatives..............................................................................................................135 12.4.3 Best Interest...................................................................................................................................................135 12.4.4 Beneficence and Non-beneficial Treatments.....................................................................................135 12.5 Example Scenario and Analysis....................................................................................................... 136 12.5.1 Vignette...........................................................................................................................................................137 12.5.2 Discussion.......................................................................................................................................................137 12.5.3 Essence of the Case.....................................................................................................................................139 References......................................................................................................................................................140

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13

Distributive Justice: Ethics in Health Care Crises...................................................... 141 Kateřina Rusinová, Marco Vergano, Aimee B. Milliken, and Andrej Michalsen

13.1 Introduction........................................................................................................................................... 142 13.2 Distributive Justice.............................................................................................................................. 142 13.2.1 Rationing.........................................................................................................................................................143 13.2.2 Triage................................................................................................................................................................143 13.2.3 Prioritization...................................................................................................................................................144 13.3 Prioritization: Ethical Reasoning..................................................................................................... 144 13.3.1 Queries on the Macro- and Meso-Levels.............................................................................................145 13.3.2 Queries on the Micro-Level......................................................................................................................146 13.4 Prioritization: Guiding Ethical Principles During Healthcare Crises................................... 148 13.5 The Role of Intensive Care Units..................................................................................................... 149 13.5.1 ICU Environment and Equipment..........................................................................................................149 13.5.2 ICU Clinicians.................................................................................................................................................149 13.6 Procedural Principles During Healthcare Crises........................................................................ 150 References......................................................................................................................................................151

V 14

Ethics in the ICU: A Way Ahead Choices in Uncertainty............................................................................................................... 157 Andrej Michalsen, Mervyn Mer, Reinier Hoff, Uwe Janssens, and Nicholas Sadovnikoff

14.1 Introduction........................................................................................................................................... 158 14.2 Clinical Ethics in a Blink of the Eye................................................................................................. 158 14.3 Prerequisites for Doing Good.......................................................................................................... 159 14.3.1 Sound Practice..............................................................................................................................................159 14.3.2 Virtues..............................................................................................................................................................159 14.3.3 Adequate Communication and Decision-Making...........................................................................160 14.3.4 Ethical Principles...........................................................................................................................................160 14.4 Operationalizing “Doing Good”: Deciding Despite Uncertainty......................................... 160 14.4.1 Equal Partaking and Prognostic Uncertainty.....................................................................................160 14.4.2 The Quest for Certainty..............................................................................................................................161 14.4.3 Patients, Families, and Legal Representatives as Stakeholders...................................................161 14.4.4 Deciding with Prudence............................................................................................................................163 14.5 Education................................................................................................................................................ 163 References......................................................................................................................................................165

Index.................................................................................................................................................................169

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Editors and Contributors About the Editors Andrej Michalsen  MD, MPH

was born in 1957  in Überlingen/See, Germany. He received his medical training at the medical schools of Kiel, Freiburg, and Tübingen universities as well as at the University of Texas School of Public Health in Houston, TX, USA, and he has worked at the academic hospitals of Mainz, Germany, and Utrecht, the Netherlands. He is currently working as a consultant in Anaesthesiology and Critical Care at Konstanz Hospital, Germany. Amongst others, he is a member of the Section on Ethics of the European Society of Intensive Care Medicine (which he chaired from 2013 until 2016), a member of the Ethics Section of the German Interdisciplinary Association of Intensive Care and Emergency Medicine, and a member of the Ethics and Conflict of Interest Committee of the American Thoracic Society. He has published and lectured extensively in the field of clinical ethics, his main areas of interest particularly comprising end-of-life care, appropriateness of care, and prioritization in healthcare delivery. Nicholas Sadovnikoff  MD, FCCM, HEC-C

obtained his medical degree from Brown University in 1984. He is trained and board certified in Internal Medicine, Critical Care Medicine and Anesthesiology, and was for 16 years the Co-Director of the Surgical Intensive Care Units as well as programme director of the Fellowship in Anesthesiology Critical Care at Brigham and Women’s Hospital (BWH) in Boston, MA. He was inducted as a fellow in the American College of Critical Care Medicine (FCCM) in 2008. He is currently Interim Chair of the Department of Anesthesiology, Critical Care and Pain Medicine at St. Elizabeth’s Medical Center in Brighton, MA. In 2008–2009, he completed the Fellowship in Medical Ethics at Harvard Medical School. He served for 7 years as Co-Chair of the BWH Ethics Committee, was Associate Director of the BWH Office of Clinical Ethics, and has achieved certification in Healthcare Ethics Consultation (HEC-C). He is the Vice-Chair of the ASA Committee on Ethics and was the 2019 recipient of the Shubin-Weil Master Clinician/Teacher Award from the Society of Critical Care Medicine. He is Co-Editor with Dr. Andrej Michalsen of an international volume of articles entitled Compelling Ethical Challenges in Critical Care and Emergency Medicine (Springer, 2020).

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Editors and Contributors

Jozef Kesecioglu  MD, PhD

is Professor of Intensive Care Medicine at the Department of Intensive Care Medicine, University Medical Center, Utrecht, the Netherlands. He has been the chair of the Department of Intensive Care Medicine between 2005 and 2020. During this period, he has re-organised the pre-existing four intensive care units and made one department of it before designing and moving to the new, award winning, state-of-­the-art ICU. Professor Kesecioglu was Chairman of the Ethics Section of the European Society of Intensive Care Medicine (ESICM). After finishing his term, he worked in the Executive Committee of ESICM as the Chair of the Division of Scientific Affairs. In 2016, he became the President Elect of ESICM. He has been the President of ESICM between 2018 and 2020. He was awarded the ESICM Society Medal in 2022. Professor Kesecioglu has authored around 175 published or in-press peer-­reviewed papers and has been giving lectures in various scientific meetings. His main interests are ethics, intensive care environment, and selective decontamination of the digestive tract.

XIX Editors and Contributors

Contributors Jan Bakker, MD, PhD, FCCM, FCCP  Department of Pulmonary and Critical Care, New York University School of Medicine, New York, NY, USA Department of Intensive Care (Adults), Erasmus University Medical Center, Rotterdam, The Netherlands Julie  Benbenishty, RN, PhD  Department of Nursing Administration, Hadassah Medical Center, Hebrew University of Jerusalem, Jerusalem, Israel Carole  Boulanger, RN, MSc, FFICM  Intensive Care Unit, Royal Devon and Exeter NHS Foundation Trust, Exeter, UK Marjel  van Dam, PhD, LLM  Department of Intensive Care Medicine, University Medical Center Utrecht, Utrecht, The Netherlands Gunnar Duttge, JD, PhD  Center of Medical Law and Department of Criminal Law, University of Göttingen, Göttingen, Germany Jochen Dutzmann, MD  Department of Cardiology, Angiology, and Intensive Care , University Hospital Halle (Saale), Martin Luther University Halle-Wittenberg, Halle (Saale), Germany E. Wesley Ely, MD, MPH  Center for Critical Illness, Brain Dysfunction, Survivorship (CIBS), Vanderbilt University, Nashville, TN, USA Veteran’s Affairs Geriatric Research Education Clinical Centre (GRECC), Nashville, TN, USA Armand  Girbes, MD, PhD, EDIC  Department of Intensive Care, Amsterdam University Medical Centers, Location VUmc, Amsterdam, The Netherlands Reinier Hoff, MD, PhD  Department of Intensive Care Medicine, University Medical Center Utrecht, Utrecht, The Netherlands Uwe Janssens, MD, PhD  Department of Internal Medicine and Critical Care, St. Antonius Hospital, Eschweiler, Germany Ann L. Jennerich, MD MS, ATSF  Division of Pulmonary, Critical Care and Sleep Medicine, University of Washington, Harborview Medical Center, University of Washington, Seattle, WA, USA Hanne Irene Jensen, PhD, MHSc, CCN  Departments of Anesthesiology and Intensive Care Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, Vejle, Denmark Department of Regional Health Research, University of Southern Denmark, Odense C, Denmark Gavin M. Joynt, MBBCh, FFA (SA), FCICM  Department of Anaesthesia and Intensive Care, Prince of Wales Hospital, The Chinese University of Hong Kong, Hong Kong, China

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Editors and Contributors

Nancy  Kentish-Barnes, PhD  Famirea Research Group, Saint Louis University Hospital, AP-HP, Paris, France Monika C. Kerckhoffs, MD, PhD  Department of Intensive Care Medicine, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands Jozef  Kesecioglu, MD, PhD  Department of Intensive Care Medicine, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands Mervyn Mer, MD  Multidisciplinary Intensive Care Unit CMJAH, University of the Witwatersrand, Johannesburg, South Africa Victoria  Metaxa, MD, PhD  Department of Critical Care, King’s College Hospital, NHS Foundation Trust, London, UK Andrej  Michalsen, MD, MPH  Department of Anaesthesiology, Critical Care, Emergency Medicine and Pain Therapy, Konstanz Hospital, Konstanz, Germany Aimee B. Milliken, PhD, RN, HEC-C  Connell School of Nursing, Boston College, Chestnut Hill, MA, USA Sabine Reimund, MD  Department of Anaesthesiology, Critical Care, Emergency Medicine and Pain Therapy, Konstanz Hospital, Konstanz, Germany Kateřina  Rusinová, MD, PhD  Department of Palliative Care, 1st Faculty of Medicine, Charles University, General University Hospital in Prague, Prague, Czech Republic Nicholas Sadovnikoff, MD, FCCM, HEC-C   Department of Anesthesiology, Critical Care and Pain Medicine, St. Elizabeth’s Medical Center, Brighton, MA, USA Charles L. Sprung, MD, JD  Department of Anesthesiology, Critical Care and Pain Medicine, Hadassah Medical Center, Hebrew University of Jerusalem, Jerusalem, Israel Bo Van den Bulcke, MD  Clinical Psychologist, Department of Sexual Assault Care Center, Ghent University Hospital, Ghent, Flanders, Belgium Marco Vergano, MD  Department of Anesthesia, Critical Care and Emergency Medicine, San Giovanni Bosco Hospital, Turin, Italy

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Principles of Clinical Ethics in Intensive Care Medicine Contents Chapter 1 Clinical Ethics and Ethical Principles – 3 Aimee B. Milliken and Nicholas Sadovnikoff Chapter 2 The Two Pillars of Intensive Care Medicine (I): Medical Indication – 13 Armand Girbes Chapter 3 The Two Pillars of Intensive Care Medicine (II): The Patient’s Wishes and Consent – 25 Aimee B. Milliken and Nicholas Sadovnikoff

I

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Clinical Ethics and Ethical Principles Aimee B. Milliken and Nicholas Sadovnikoff Contents 1.1

Introduction – 4

1.2

Ethical Theory: An Overview – 4

1.2.1 1.2.2 1.2.3 1.2.4

 tilitarianism – 4 U Deontology – 5 Virtue Ethics – 5 Narrative Ethics – 6

1.3

Principlism – 6

1.3.1 1.3.2 1.3.3 1.3.4 1.3.5

 eneficence – 7 B Non-maleficence – 7 Distributive Justice – 8 Autonomy – 8 Limitations to Principlism – 9

References – 10

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Michalsen et al. (eds.), Ethics in Intensive Care Medicine, Lessons from the ICU, https://doi.org/10.1007/978-3-031-29390-0_1

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nnLearning Objectives 55 By the end of this chapter, readers will gain an understanding of several common ethical frameworks and theories, with a particular focus on principlism.

1.1 

Introduction

As life-sustaining technologies began to proliferate in the 1960s and 1970s, questions regarding the just allocation of scarce resources such as dialysis machines began to emerge, as did uncertainty regarding the permissibility of withholding or withdrawing such interventions as mechanical ventilation, and a reexamination of the way society defines death. These issues were some of the first quandaries the nascent discipline of clinical ethics evolved to attempt to answer. As a consequence, clinical ethics committees and consultation services first began to appear in hospitals in the United States (US) in the 1970s and 1980s [1], and more recently in Europe and elsewhere [2]. While ethics committees and ethics consultation services are now commonplace in hospitals throughout the US and Europe and are increasingly seen in other developed countries [1, 3, 4], there is wide variability in the accessibility and availability of ethics consultation support. Yet clinicians at the point of care are often faced with navigating ethically complex situations and find themselves needing a foundational understanding of clinical ethics and related frameworks. In this chapter, we review a selection of common ethical frameworks and theories. In particular, we will focus on the framework of principlism, which is one commonly used by both ethicists and clinicians. We will then provide an overview of each of its four major ethical principles and include common clinical examples where each principle may apply. 1.2 

Ethical Theory: An Overview

Ethical theory can be used to provide frameworks and guidance when navigating ethically challenging clinical situations. Multiple ethical constructs exist and are derived from varied philosophical frameworks. What follows is a brief review of four predominant ethical theories, common applications of these theories to the healthcare setting, and some possible limitations. 1.2.1 

Utilitarianism

Utilitarianism is an approach to normative ethics that holds that the morally correct action is the one that produces the most good [5]. “Good” can be defined in a number of ways, including happiness, pleasure, beauty, and the absence of suffering or pain, to name a few. Importantly, in this framework, the moral agent is impartial and neutral, meaning the good of everyone counts equally [5]. Philosophers Jeremy Bentham and John Stuart Mill are most commonly associated with utilitarianism [6]. Utilitarianism is considered a consequentialist framework, in that the morality of the action is judged by its outcome, or consequences (i.e., whether good was maximized).

5 Clinical Ethics and Ethical Principles

55 In healthcare, the framework of utilitarianism is often applied to situations that call for resource allocation. For example, many of the first critical care allocation frameworks developed in the height of the COVID-19 pandemic prioritized “maximizing benefits” by saving the most lives and/or life years [7]. Utilitarianism is the philosophical framework underlying public health ethics, which typically aims to promote “good” by minimizing the morbidity and mortality of the population [8]. Resources are used in such a way that the best possible effect on health is achieved for as many patients as possible, thus maximizing health gain. Prioritizing the good of the population, however, can at times conflict with the good of the individual patient, if, for example, by diverting a resource away from one person a larger number of people could be saved. 1.2.2 

Deontology

In contrast to utilitarianism, deontology is a philosophical theory that guides action based on rules or duties, rather than the consequences of the actions [9]. Rather than focusing on the good of a population, deontological perspectives tend to emphasize the rightness of the individual’s action. Immanuel Kant’s moral theory famously utilized “maxims” or rules that rational agents ought to use to guide action and prioritized the humanity of individuals by prohibiting the use of other persons as a means to achieve one person’s end [6, 9]. His overarching rule was the categorical imperative, “Act only according to that maxim whereby you can, at the same time, will that it should become a universal law.” 55 Deontological theory allows for the moral agent to exercise preference, by being partial, for example, to one’s friends, family, or, as a physician, to one’s patients. In this way, deontology can be viewed as a patient-centered ethical framework, where the humanity of the individual patient is prioritized. For example, advocating for one’s patient to receive access to a scarce resource, such as a transplantable organ, could be viewed as a deontological imperative. A challenge with deontological theory is that exceptions can be found to most rules. For example, we may propose the rule that clinicians must “do no harm,” however it is possible to imagine a scenario where a clinician might cause some degree of harm (for example, through the pain of surgery) in order to confer future benefit (such as an extension of life or improved prognosis). This is considered ethically permissible assuming the harm is proportional to the expected benefit. 1.2.3 

Virtue Ethics

Rather than concentrating on duties or the consequences of actions, virtue ethics focuses on moral character, or “virtues” [10]. Virtue ethics derives from the writings of Plato and Aristotle, who define virtues as character traits, a “way of being” that creates a propensity for good action. One must cultivate virtues by practicing them; they are habits of character. The virtuous person might help someone in need not because it is the “right” thing to do according to a rule or duty, but because they are exercising the virtue of benevolence. Virtues are possessed in degrees; a person can be more or less courageous or kind or noble and may fall short in certain instances [10].

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55 In healthcare, codes of ethics spell out many virtues expected of clinicians [6]. Pellegrino identifies six essential virtues for clinicians: fidelity, honesty, compassion, effacement of self-interest, courage, and justice [11]. Many have suggested that exercising these virtues regularly can help clinicians navigate situations of ethical complexity. However, Pellegrino’s list of virtues is not exhaustive, and though acting virtuously may help clinicians to act ethically, virtue ethics does not provide directive guidance in the face of every ethical dilemma or conflict. Further, virtue ethics may be insufficient in encounters between relative strangers, where rules, principles, and policies often guide behavior [6]. 1.2.4 

Narrative Ethics

Narrative ethics is “an approach to moral inquiry that assumes the central importance of stories in understanding ethical dilemmas and assessing possible responses” [12]. Using a narrative ethics framework, an understanding of a person’s lived history, the “stories” of their experiences, and what matters to them most become instructional in decision-making. For example, a narrative approach would involve asking questions about how the ethical challenge came to be [13]. 55 This approach calls for resolutions to clinical ethical challenges that are consistent with what matters to the patient [13]. In other words, based on the way the patient derives meaning, and the way they have lived their life up until this point, what might we recommend doing next? In this way, narrative ethics focuses deeply on the patient as a human with autonomy and agency. Narrative ethics provides less of a structure than other ethical theory, however. Further, what matters to the patient in a given situation may not be consistent with medical recommendations or the standard of care.

1.3 

Principlism

Principlism is an ethical framework focused on four moral principles: beneficence, non-maleficence, justice, and respect for autonomy. These principles serve as norms derived from common morality and are often used as a starting point for decision-­making in clinical ethics [6]. Two key processes related to these principles are specification—adding specific content to general principles—and balancing—determining the relative weight of conflicting principles. These principles may intersect with some of the aforementioned ethical theories. Beauchamp and Childress [6], for example, draw parallels between principles and corresponding virtues: respect for autonomy is enacted via respectfulness for autonomy, non-maleficence via non-malevolence, beneficence via benevolence, etc. In this way, ethical principles can be used to guide action. An ethical conflict, or dilemma, occurs when principles appear to suggest divergent possibilities for action [14].

7 Clinical Ethics and Ethical Principles

1.3.1 

Beneficence

Beneficence is the ethical obligation to do good. In medicine and in healthcare more generally, codes of ethics call for clinicians to do good by helping patients. In the same way that autonomy generates clinician obligation, the principle of beneficence calls providers to take action on the behalf of their patients to achieve “good” outcomes. Good can be framed broadly, such as in the prevention of disease and promotion of health which are general aims of medicine. Importantly, however, “good” is also patient specific; what one patient considers to be of benefit may be considered undesirable or unacceptable to another patient [15]. The duty to care is founded in the principle of beneficence. Healthcare providers have a moral obligation to further the welfare and well-being of their patients; the provision of this care may even involve some degree of risk to the provider, such as in a pandemic [16]. 1.3.2 

Non-maleficence

Non-maleficence is the duty to prevent or avoid harm. This principle requires clinicians to avoid the provision of care that may be reasonably assessed to be more harmful than helpful for the patient. It is also a reminder that interventions that at one point in time were indicated may become inappropriate as the patient’s clinical status changes. As such, clinicians should consider the proportionality of burdens to benefits when making treatment decisions [15]. Clinicians have an obligation not to offer interventions they assess to be proportionately more harmful than helpful to the patient. That said, from the legal perspective, a “good” outcome can usually not be guaranteed, and as such inadvertent “harms” that might result from interventions are often considered acceptable, provided proper informed consent. Generally, and especially in the United States, the withdrawal of life-sustaining interventions requires the consent (or at a minimum, assent) of patients or their surrogates, even when the intervention appears no longer to be appropriate. This practice may be different in other places where a more parentalistic approach to end-of-life care is the norm and/or stopping interventions is considered the medical responsibility and decision of the clinical team. Intractable disagreement about the provision or continuation of life-sustaining interventions may occur, necessitating a procedure for mitigating ongoing harm while providing due process for the surrogate seeking the continuation of treatment. Non-maleficence is at the basis of many non-beneficial and inappropriate treatment policies—formerly described as “futility” policies. A multi-society international consensus statement argues that “ICU interventions should generally be considered inappropriate when there is no reasonable expectation that the patient will improve sufficiently to survive outside the acute care setting, or when there is no reasonable expectation that the patient’s neurologic function will improve sufficiently to allow the patient to perceive the benefits of treatment” [17]. In the instance where such a treatment has been identified, but is requested by surrogates, the consensus statement recommends following a seven-step process for resolution. This process involves: (1) enlisting expert consultation during the dispute-resolution process (such as an ethics

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consultation); (2) providing the surrogates with notice of the process; (3) obtaining a second medical opinion; (4) review by an interdisciplinary hospital committee; (5) offering surrogates the possibility of transfer to another institution; (6) informing surrogates of the opportunity to pursue extramural appeal; and (7) the implementation of the decision of the resolution process [17, 18]. It should be noted that the term “futility” is no longer used in clinical ethics, given the value-laden and subjective nature of the term. 1.3.3 

Distributive Justice

The principle of justice often involves considerations of fairness broadly, such as in healthcare policy and as well as with regard to specific patients at the point of care [15]. Justice requires that clinicians treat “like patients alike”; in other words, patients who present with the same clinical issue should, in theory, have access to the same quality of care. There are, however, constraints to this principle. For example, where universal healthcare is not provided, as in the US, health insurance is often a driver of access to care, rendering patients with better coverage more able to access resources. Similarly, clinicians are often recognized to practice with implicit “rationing”; patients who are more critically ill necessitate more clinical time than patients who are less ill, and may be allocated resources, such as ICU beds preferentially given their clinical status [19]. The principle of justice calls us to evaluate these decisions to ensure that they are being made fairly and without undue bias. Policy development is one method of attempting to ensure patients are treated justly. Organ allocation, for example, requires attention to distributive justice, or the way resources are allocated. These policies are carefully designed to ensure that organs, as a scarce resource, are allocated to the person most likely to benefit as the recipient. The creation of policy can help prevent subjectivity from entering into decision-making for individual patients, which may result in certain categories of patients, such as those who are better-resourced or more powerful, receiving preferential treatment. Similarly, triage policies, meant to aid clinicians in allocating scarce resources such as ventilators or ECMO circuits, are also theoretically founded on the principles of distributive justice. In early stages of the COVID-19 pandemic, many Crisis Standards of Care policies were developed with the aim of saving the most lives. However, it quickly became clear that mechanisms for dispassionately and objectively deciding who was most likely to survive, given comorbidities and preexisting conditions, served to disproportionately impact people of color and those with disabilities, rendering them less likely to be the recipient of the scarce resource [20–22]. 1.3.4 

Autonomy

Autonomy has been defined as the capacity for self-governance, which involves understanding, deliberating, managing, and independent choosing [6]. To exercise the principle of respect for autonomy, clinicians must acknowledge the patient’s right to “hold views, to make choices, and to take actions based on their values and beliefs” [6] and use these values to inform and guide the plan of care. Respect for autonomy,

9 Clinical Ethics and Ethical Principles

then, creates a set of negative obligations, or constraints on practice so as not to infringe upon patient autonomy, and a set of positive obligations, or actions that ought to be taken to further patient autonomy. Respect for autonomy is the basis of many clinical practices. Informed consent, for example, is a mechanism to ensure autonomous decision-making. Informed consent requires the disclosure of information relevant to the decision at hand, the freedom from constraint or controlling influences, and requires that the person making the decision have the capacity to do so [6]. Consent that is lacking in any of these elements may be considered to violate respect for autonomy. Similarly, the practice of surrogate decision-making is, in principle, an extension of a patient’s autonomy. When a patient lacks decision-making capacity, clinicians turn to surrogate decision-makers to help guide treatment choices. The surrogate should use their knowledge about the patient’s goals and preferences to inform their decisions. If the patient has an advance directive, the obligation of the surrogate is to use the information in the directive to guide decision-making, under the assumption that these directives represent the patient’s autonomous preferences. In the absence of a written directive, surrogates and clinicians utilize substituted judgment as a guide for decision-making, attempting to ascertain what the patient would choose for themselves, were they able to make the decision [23]. In some instances, patients may never have had decision-making capacity, or there may be very little information known about the patient relative to the decision at hand. In these situations, clinicians and families may use the best interest standard to guide decision-making. The best interest standard involves acting “so as to promote maximally the good of the individual” [24]. This includes freedom from pain, suffering, and the like. Substituted judgment as a decision-making model has been critiqued on several accounts [23]. First, many authors have argued that individuals change their minds as to their aspired extent of treatment when they fall seriously ill, and as such we can never truly know what someone would choose in any given instance. Second, there is evidence to suggest there is often discordance between what a patient would choose and what their surrogate or clinician assumes they would choose [25]. Third, research has shown that many patients actually prefer the input of their providers and families when making decisions, and that this input has an influence on what they would choose. 1.3.5 

Limitations to Principlism

Though much of clinical ethics is approached through application of the aforementioned principles, principlism is not without limitations. For example, in the event of an ethical dilemma, where two principles are in conflict, it is often unclear which principle should take precedence in guiding action. While the principles’ application is intended to be accompanied by specification—adding case-specific content—and balancing—determining the relative weight of conflicting principles—it has been argued that these processes involve an appeal to human good and evils, and hence need a “theory of good,” something that is not explicitly articulated in the framework of principlism [26]. This is further complicated by the fact that principles are weighed differently in different cultures. Western cultures, such as the United States or most European

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countries, tend to value autonomy above all else, particularly in clinical ­decision-­making. Other cultures, such as some Eastern communities, prefer a more communitarian or family-centered approach to decision-making. As such, the relative weight of the ethical principles may shift depending on the patient’s social or cultural context. Further, the four principles explicated here are not exhaustive [27]. Other important moral considerations, such as veracity, fidelity, and confidentiality, may have a role in ethical decision-making. Nevertheless, principlism is a common and useful framework for clinicians faced with ethically challenging situations and can be used in conjunction with other ethical frameworks, such as those described in this chapter, to arrive at an ethically sound plan of care. Take-Home Messages 55 Ethical theory can provide frameworks and guidance when navigating ethically challenging clinical situations. 55 Principlism is a commonly used ethical theory. Major ethical principles include autonomy, beneficence, non-maleficence, and (distributive) justice. 55 Principlism has limitations but can be a useful starting point for ethical deliberation. 55 Other commonly used ethical theories include utilitarianism, deontology, virtue ethics, and narrative ethics. 55 Utilitarianism is an approach to normative ethics that holds that the morally correct action is the one that produces the most good. 55 Deontology is a philosophical theory that guides action based on rules or duties, rather than the consequences of the actions. 55 Virtue ethics focuses on moral character or “virtues” which must be cultivated by practicing them; they are habits of character. 55 Narrative ethics assumes the central importance of stories in understanding ethical dilemmas and assessing possible responses.

Summary Ethically challenging situations arise frequently in intensive care medicine; therefore, clinicians ought to be equipped with a basic understanding of the tools of clinical ethics. Common ethical theories include utilitarianism, deontology, virtue ethics, narrative ethics, and principlism. Principlism is most often utilized by bioethicists and clinicians alike. Like most ethical theory, principlism has certain limitations, however it is a useful starting place for ethical deliberation and can be used in combination with other ethical theory to aid clinicians in identifying and navigating ethical complexity.

References 1. Tapper EB. Consults for conflict: the history of ethics consultation. Baylor Univ Med Cent Proc. 2017;26:417–22. 2. Shildman J, Gordon J-S, Vollman J. Introduction. In: Shildman J, Gordon J-S, Vollman J, editors. Clinical ethics consultation: theories and methods, implementation, evaluation. Surrey: Routledge; 2010.

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3. Hajibabaee F, Joolaee S, Cheraghi MA, et al. Hospital/clinical ethics committees’ notion: an overview. J Med Ethics Hist Med. 2016;9:1–9. 4. Fox E, Danis M, Tarzian AJ, et  al. Ethics consultation in U.S. hospitals: a national follow-up study. Am J Bioeth. 2021;22:5–18. 5. Driver J. The history of utilitarianism. In: Zalta EN, editor. Stanford encyclopedia of philosophy. Stanford: The Metaphysics Research Lab of Stanford University; 2018. 6. Beauchamp TL, Childress JF. Principles of biomedical ethics. 8th ed. New York: Oxford University Press; 2019. 7. Emanuel EJ, Persad G, Upshur R, et al. Fair allocation of scarce medical resources in the time of Covid-19. N Engl J Med. 2020;328:1–7. 8. Berlinger N, Wynia M, Powell T, et al. Ethical framework for health care institutions responding to novel coronavirus SARS-CoV-2 (COVID-19) guidelines for institutional ethics services responding to managing uncertainty, safeguarding communities, guiding practice. Garrison: The Hastings Center; 2020. 9. Alexander L, Moore M. Deontological ethics. In: Zalta EN, editor. Stanford encyclopedia of philosophy. Stanford: The Metaphysics Research Lab of Stanford University; 2021. 10. Hursthouse R, Pettigrove G. Virtue ethics. In: Zalta EN, editor. Stanford encyclopedia of philosophy. Stanford: The Metaphysics Research Lab of Stanford University; 2018. 11. Pellegrino ED. Character formation and the making of good physicians. In: Kenny N, Shelton W, editors. Lost virtue: professional character development in medical education. 10th ed. Oxford: Elsevier; 2006. 12. Montello M.  Narrative ethics. In: LaFollette H, Brock G, Deigh J, et  al., editors. International encyclopedia of ethics. New York: Wiley; 2021. 13. Montello M. Narrative ethics. Hast Cent Rep. 2014;44:2–7. 14. Jonsen AR, Siegler M, Winslade WJ. Clinical ethics: a practical approach to ethical decisions in clinical medicine. New York: McGraw-Hill; 2010. 15. Carrese JA, Sugarman J. The inescapable relevance of bioethics for the practicing clinician. Chest. 2006;130:1864–72. 16. Ruderman C, Tracy CS, Bensimon CM, et al. On pandemics and the duty to care: whose duty? Who cares? BMC Med Ethics. 2006;7:1–6. 17. Kon AA, Shepard EK, Sederstrom NO, et al. Defining futile and potentially inappropriate interventions: a policy statement from the Society of Critical Care Medicine Ethics Committee. Crit Care Med. 2016;44:1769–74. 18. Bosslet GT, Pope TM, Rubenfeld GD, et al. An official ATS/AACN/ACCP/ESICM/SCCM policy statement: responding to requests for potentially inappropriate treatments in intensive care units. Am J Respir Crit Care Med. 2015;191:1318–30. 19. Truog RD, Brock DW, Cook DJ, et  al. Rationing in the intensive care unit. Crit Care Med. 2006;34:958–63. 20. Milliken A, Jurchak M, Sadovnikoff N, et al. Addressing challenges associated with operationalizing a crisis standards of care protocol for the Covid-19 pandemic. NEJM Catal. 2020;1:1–14. 21. Solomon MZ, Wynia M, Gostin LO. Covid-19 crisis triage—optimizing health outcomes and disability rights. N Engl J Med. 2020;383:e27. 22. Manchada E, Couillard C, Sivashanker K.  Inequity in crisis standards of care. N Engl J Med. 2020;383:e16. 23. Torke AM, Alexander GC, Lantos J. Substituted judgment: the limitations of autonomy in surrogate decision making. J Gen Intern Med. 2008;23:1514–7. 24. Buchanan A, Brock D. Deciding for others: the ethics of surrogate decision making. Cambridge: Cambridge University Press; 1989. 25. Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med. 2006;166:493–7. 26. Shea M.  Principlism’s balancing act: why the principles of biomedical ethics need a theory of good. J Med Philos. 2020;45:441–70. 27. Walker T. What principlism misses. J Med Ethics. 2009;35:229–31.

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The Two Pillars of Intensive Care Medicine (I): Medical Indication Armand Girbes Contents 2.1

Introduction – 14

2.2

 efinition of Intensive Care and Intensive D Care Patient – 15

2.3

Criteria to Admit a Patient – 16

2.4

 coring Systems Regarding the Severity S of Disease – 18

2.5

The Decision: To Admit or Not to Admit – 18

2.6

Exceptional Situations to Admit a Patient – 19

2.7

Derogatory Reasons to Admit or Not to Admit – 19

2.8

Consequences of Admitting a Patient – 20

2.9

Consequences of Not Admitting a Patient – 21 References – 22

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Michalsen et al. (eds.), Ethics in Intensive Care Medicine, Lessons from the ICU, https://doi.org/10.1007/978-3-031-29390-0_2

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nnLearning Objectives

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55 Readers will be able to derive what constitutes an “ICU patient.” 55 Readers will recognize medical and ethical factors as well as biases that contribute to the decision to admit a patient to an intensive care unit. 55 Readers will learn to critically analyze their own decisions on medical indications for admission of a patient. 55 Readers will be able to argue why a patient should not be admitted to the ICU under certain circumstances.

2.1 

Introduction

Setting the medical indication for admission to an intensive care unit (ICU) is an important decision in the course of a disease for an individual patient. In general, and at first sight, the indication is made whenever short-term survival of the patient is at stake and vital organ systems are at risk of failing or are already failing. Death can thus be prevented by an admission to the ICU. If this is in the best interest of the patient, outweighing all disadvantages of an ICU admission, it seems reasonable and justifiable to admit him/her. However, since death is inevitable, it is good to realize that this means that death is postponed to a later moment, which can be days, months, years, or decades later. Reasoning from the perspective of both the treating team and the patient, balancing advantages versus risks and harm is generally discussed in papers and protocols on indication for admission. This includes reversibility of disease versus risk of excessive treatment or inappropriate treatment that cannot lead to improvement, and other disadvantages of intensive care treatment. Other reasons neither frequently discussed in protocols, nor subject of thorough research may include motives considered as ethically defendable (e.g., delaying the moment of death in the ICU to give family members the time to travel to the hospital and say farewell) as well as merely personal emotions of the physician. Furthermore, general reasons might explain an admission—such as political grounds, financial advantages, or fear of image damage—as well as a personal interest of the physician, an interest of the department or hospital, or an interest of the family. All these factors are generally hardly discussed, mainly because they are difficult to study properly in a scientific way. However, they might be a driving factor as to the decision for admission. Ignoring denial or humbug can hinder the recognition of these motives. Therefore, I will discuss these issues below in a qualitative way, considering that quantification is hardly possible. Moreover, composite reasons can play a role in the decision to admit a patient: if a single reason may be doubtful and insufficient as an argument for admission, several simultaneously present and even doubtful aggregated reasons may turn out to be a valid reason for admission. Finally, in this chapter on medical indication for admission, the contrary—“not an indication for ICUadmission”—will also be discussed. The role of the patient’s wishes and consent is discussed in 7 Chap. 3.  

15 The Two Pillars of Intensive Care Medicine (I): Medical Indication

2.2 

Definition of Intensive Care and Intensive Care Patient

When we discuss admission to the ICU, we implicitly seem to agree on the definition of “intensive care (unit)”: what makes an ICU an ICU? However, impressive differences in the number of available intensive care beds per 100,000 citizens in different Western countries highlight the potential differences in definition, whereas the differences in criteria to admit a patient to an ICU seem to be small. The difference of more or less official numbers of available ICU beds in European countries may vary from 7 per 100,000 inhabitants (Netherlands) to 29 per 100,000 inhabitants (Germany) and can be slightly different according to the reference. Numbers outside Europe vary from 2.3 (India) to 34.7 (USA) [1–4]. However, when taking into account the existence of coronary care units (CCU), intermediate care units (IMC), peri-­anesthetic care units (PACU), respiratory care units, and even brain care units, it becomes quite unclear what the definition of “an ICU-bed” really is and how exactly an ICU patient is characterized. Is an ICU patient simply a patient that occupies an ICU bed, and is an ICU bed a bed where an ICU patient can be treated? In recent years, we developed a flowchart for the Dutch guidelines (. Fig.  2.1), integrated there in a slightly adapted form, to define an ICU patient. The definition and interpretation certainly depend on national or regional circumstances, but the flowchart model may serve as a general guideline. The recent COVID-19 pandemic underscored the importance of admission criteria, due to a—more overt than ever—shortage of ICU facilities. Even more so, the pandemic revealed the differences between several countries regarding the reasons not to admit patients to the ICU [5]. The latter, though, does not necessarily involve the intensivist in the decision-making process, since the decision can take place at an earlier stage at the level of the general practitioner (GP) or at nursing homes. In fact, ICU patients are patients with a life-threatening disease that cannot be treated at a regular ward because of the need for continuous monitoring of vital functions and/or intensive treatment that may require adaptation at any moment. And intensive care units are wards that fulfill very special requirements in terms of personnel, equipment, and organization so that intensive care patients can be treated appropriately [6]. First, highly trained staff must be available to deliver 24/7 care with a high doctor/patient and nurse/patient ratio. Furthermore, physiotherapists, pharmacists, microbiologists, psychologists, and increasingly family coaches may be part of the treating team, supporting the patients but also their relatives and friends. Second, a wide range of apparatus must be in place to monitor closely a multitude of patient’s parameters and facilitate the treatment of failing organ systems, like continuous intravenous administration of vasoactive medication, mechanical ventilation, renal replacement therapy, extra corporeal membrane oxygenation, and mechanical circulatory support. Taken together, intensive care constitutes a very expensive part of hospital care. Hence a very judicious manner of using these facilities and the necessary funds is compulsory.  

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Single organ cardiac failure requiring continuous monitoring No

2

Yes

Treatment at Coronary Care Unit (CCU)

Shortly expected or present life-threatening condition with > 1 organ system failure

Yes

No

Not intensive care patient

Medical indication for continuous monitoring with anticipated needed acute treatment of circulation or airways or respiratory tract Yes

No

Medium Care / High Care / Intermediate Care Unit

Perioperatively induced risk or actual failure of vital organ function with expected improvement/resolution within hours No

Yes

Peri-Anesthetic Care Unit (PACU)

Respiratory improvement highly probable < 2 hours with CPAP or HFNO in the absence of other acutely deteriorating organ system (especially renal-, hepatic system) No

Yes

IC or CCU or MC with involvement intensivist or Respiratory Care Unit

ICU patient [CPAP=continuous positive airway pressure; HFNO=high flow nasal oxygen]

..      Fig. 2.1  Definition of an intensive care patient—flowchart

2.3 

Criteria to Admit a Patient

Patients can be admitted to the ICU in several situations: in unpredictable emergency situations, in the course of progression of a disease that deteriorates in a way that vital functions are at risk, and in a planned manner, for instance, after a high-risk treatment or operation. The final decision to admit a patient is the responsibility of the intensive care specialist, the intensivist, and is part of his/her daily work [7, 8].

17 The Two Pillars of Intensive Care Medicine (I): Medical Indication

However, in order to make well-balanced decisions, consultation and discussion with other clinicians are advisable, especially with the referring medical specialist, but also with the patient’s general practitioner and with the nurses to be involved in the treatment of the patient [7]. From a pure medical point of view, it is all about medical expertise; is there a reasonable chance of reversibility of the present condition of the patient? Since the patient is in a situation where the function of vital organ systems is at risk or already failing, reversibility refers to obtain a condition where intensive care is no longer needed to continue to live at least in the status quo ante. However, comparing data of different Western countries indicates very different policies in clinical practice. In the USA, 47% of hospital deaths involve ICU admission, whereas in England this number is only 10%. Moreover, in the United States, patients older than 85 years who died in a hospital were treated in medical ICUs in 32% and in surgical ICUs in 61% of the cases. As a comparison, in England these numbers were 1.9% and 8.5%, respectively [9, 10]. These figures probably indicate that admission criteria for people with incurable disease were far less strict or limiting in the USA compared to England. Contributing factors will be discussed later in this chapter. Medical considerations and medical expertise are the cornerstone in the criteria to admit a patient, although additional considerations merit attention. This implies also the consideration of the opposite, criteria not to admit the patient. Of note, refusal of ICU admission due to a full unit, i.e., for obvious practical reasons, may have a negative impact on survival [11] and patients considered to be “too well for admittance” still have a considerable mortality of 8–14% [12, 13]. Answering the question “Can the patient benefit from an ICU-admission?” can be helpful in a broader context. The benefit may be seen from many perspectives and relates to multiple factors, such as social, emotional, and practical factors, and importantly, but not exclusively to the question, whether a longer life after the ICU admission is worthwhile according to the patient. Patient’s disease characteristics are among the most important criteria and are expressed in severity of illness. Severity of illness is in fact determined by the balance of the magnitude of the acute disease, the patient’s physiological reserve, and the amount of treatment that is already rendered and/or could be given in the future [8]. The physiological reserve is generally derived from the age, functional status, exercise capacity, and comorbidities. Importantly, the treatment options as to a (temporary) cure for the principal disease causing the need for ICU admission determine the chances of reversibility of critical illness. Therefore, a diagnosis of the principal disease is required to fully estimate the chances of reversibility and to subsequently estimate the potential gain of an ICU admission. It is not uncommon that such a diagnosis has not yet been established at the time of the intended ICU admission. Consequently, this is a burden to determine the odds for the patient to recover, and, therefore, “buying time” by symptomatic treatment in the ICU to establish the ­diagnosis is a serious consideration. Buying time may be required since, although be it a truism, one should realize that one can die only once. It is of no surprise that expectations and chances of patients to survive have improved where therapeutic options for the principal disease have improved. Hematological malignancies and AIDS-related critical illness are good examples therein [8, 14].

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2.4 

2

Scoring Systems Regarding the Severity of Disease

A plethora of scoring systems as to the severity of disease have been developed for several subpopulations of patients, such as patients with cancer, elderly patients, patients with acute kidney failure, but also ICU patients. As an example, well-known scoring systems for ICU patients include the “Acute Physiology and Chronic Health Evaluation” (APACHE), the “Simplified Acute Physiology Score” (SAPS), and the “Sequential Organ Failure Assessment” (SOFA) [6, 15–21]. These scoring systems are a useful tool to describe groups of patients, though with specific limitations, but their use in predicting the outcome of individual patients is very limited. However, the scoring systems can be very helpful to the clinician to enhance the completeness of information on a specific patient and make the right decision [22].

2.5 

The Decision: To Admit or Not to Admit

At some point, a decision must be made whether to admit the patient to the ICU or not. To make an appropriate decision for the patient and with the patient, information about the patient’s illness, his/her medical history, and his/her wishes and expectations as well as the family’s should be as complete as possible. If vital information is missing, a decision to admit the patient to buy time for gathering more information is a justifiable reason for admission and should be weighed against the risk of inappropriate treatment outside the ICU. Admittance requires reversibility of the actual condition with a reasonable chance for the patient to benefit, achieving a good or sufficient quality of life according to his/her judgement, despite the trouble, sacrifices, and problems caused by intensive care treatment. In a recent study investigating the UK intensivists’ preferences for patient ICU admission, next to age and severity of disease, the views of the family had an important impact on the decision [23]. The view of the family is obviously significantly determined by the information that has been given previously, creating their expectations of an ICU admission [24, 25]. Careful and timely information in a trustful way by experienced intensivists is of utmost importance. Any acute situation for patients and their family, who have not been adequately informed previously regarding the possibility of such a situation, imposes an extra handicap for good exchange of information. This is especially true if a physician unknown to the patient and the family, shows up to discuss the option of not admitting the patient to the ICU. Advance care planning, i.e., raising the issue of a potential ICU admission at some time in the future at a moment that an ICU admission is not (yet) an actual issue, is a way to ease the conversation at the moment when an ICU admission is actually imminent [26]. The decision to admit or not to admit a patient to an ICU causes more stress to the decision-makers, i.e., the treating team, currently than in the past. Whereas in the past, the doctor would make a decision that was thereafter undisputed, nowadays claims by the family, societal expectations, legislation, and access to “internetinformation” lead to the decision being swiftly challenged by the patient or the family. Cultural and religious differences between staff and family may add to contest the decision of the medical team (see 7 Chap. 6). Among others, Harvey and Gardiner described moral distress in health care workers in this respect that may  

19 The Two Pillars of Intensive Care Medicine (I): Medical Indication

contribute to burnout in healthcare professionals. Raising awareness among the ICU professionals as to this risk is a first step to address the issue of burnout prevention. Thus, dissemination and application of resiliency building measures can then be sought and implemented [27–29]. The desire and motive to avoid all stress and untoward discussions as to the admittance decision may therefore play a role in the intensivist’s actions. But an “undisputed decision” would not necessarily be in the best interest of the patient nor would it equal a decision made under ideal conditions. From a patient’s perspective, it is of importance to realize that patients may fear that once the choice for ICU admission is made, they might come into an irreversible situation where they cannot express their will anymore at all. This holds also true for the family. There is, obviously, no general solution for this dilemma, but acknowledging and discussing it with the patient and family will help to make the best decision under the circumstances prevailing. Setting time limits or limitations as to the extent of treatment issues should be part of such a discussion (see 7 Chap. 8).  

2.6 

Exceptional Situations to Admit a Patient

This chapter is written to help the reader to deal with the majority of admission decisions. However, situations may occur that may be seen only once or twice in an intensivist’s lifetime. As a general guideline, it is helpful to acknowledge that even then the only goal of the medical team is to act in the best interest of the patient, in accordance with his/her wishes. Therefore, if one stands to a difficult situation, the question to be answered is: what is in the best interest of the patient, what is in line with the (last) will, according to the well-informed patient, and what is feasible. A 28-year-old female patient, after having been treated extensively for a hematological malignancy without success and without further therapeutic options, developed renal failure and cardiac failure. It was clear that treatment in the ICU could prolong her life for only a very short time, but reversibility was impossible, and sepsis was imminent. However, her long-held ultimate wish was to marry her fiancé. This was only possible if treatment in the ICU was continued. The marriage was organized in the largest available room of the ICU, with the presence of the family and a live stream for all friends. Two days after the marriage, the patient developed septic shock and died in the presence of her husband and parents.

2.7 

Derogatory Reasons to Admit or Not to Admit

The following issue may be uncommon to be discussed in a textbook, but should be mentioned and acknowledged as it potentially influences a decision to admit a patient or not. Although the role of the physician and the healthcare team is to do everything in the best interest of the patient, other motives may exist that can be seen as more or less wrong and politically incorrect. Literature on this issue is scarce, but every clinician working in the ICU will be confronted with it (sooner or later). First, a lot of pressure can be exerted on the intensivist to admit a patient, among others, by referring physicians, the patient, family, lawyers, friends of the intensivist,

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managers, directors, politicians, influential public figures, or—in case of a patient being a public figure—from the public opinion or media. Pressure can be with emotional arguments, but also financially or physically. Deplorably, clinicians are not only subjected to verbal aggression nowadays, but also to threats of physical aggression or even actual physical harm aimed at extorting the admission of a patient. It is naïve to think that clinicians are not susceptible to this kind of pressure [30]. Second, feelings of guilt of any physician involved in the patient’s treatment regarding a previously made medical error that contributed negatively to the condition of the patient may be felt as an obligation for admittance. However, a patient in a specific condition due to a medical error should not have another approach in terms of medical treatment compared to a patient in exactly the same condition not caused by a medical error. It is therefore of importance to be aware of such motives, for instance, from a referring physician. Third, fear of lawsuits may influence the decision to admit the patient. Importantly, lawsuits may not only relate to financial consequences but also to the impact on daily life for the physician and his or her family. Fourth, scarcity of available treatment capacity in the ICU or, on the contrary, many empty available ICU beds may also influence the admittance decision [11]. Possible image damage to the reputation of the department or the hospital can also be a reason to admit or not to admit a patient. As an example, if mortality rate of a specific category of diagnosis is already high, e.g., COVID-19 patients, a secondary referral hospital might decide not to admit a patient from another hospital when a high probability of death is anticipated. If occupancy rates of a specific ICU are low, however, one might be tempted to admit patients just to lift the figures of occupancy rate, especially when a consecutive cut in the number of staff members is imminent. Finally, financial interests or even truly criminal reasons may cause a family to refute ICU admission in the patient’s name, with the aim to hasten his/her death. The contrary is also possible, when any prolongation of life of the patient—even in a state of vegetative coma—is only of financial or criminal interest to others than the patient. Awareness regarding such situations is of importance. There is no general solution, and each case needs to be assessed individually. However, involving other staff members at a low threshold, openly discussing one’s feelings, emotions, and the pressure exerted will be of help. Taking time in some situations can also contribute to the solution of such dilemmas. It speaks for itself that trust and good collegiality need to be present within the staff. Specific situations can also be anticipated and described in a general guideline, e.g., what to do if a “very important person” is involved in such a difficult situation or what to do in case of verbal or physical threats.

2.8 

Consequences of Admitting a Patient

Although at first sight it may seem an irreversible decision to admit a patient to the ICU, it is not. The medical indication for treatment and care in the ICU may change in the light of new information or during the course of the disease. Therefore, it is important to re-evaluate the medical indication for ICU treatment regularly or after

21 The Two Pillars of Intensive Care Medicine (I): Medical Indication

a specific number of days, as part of a so-called time limited trial (TLT) of intensive care treatment [26]. After all, reversibility of the life-threatening condition may be difficult to determine in some cases and a trial of some pre-determined time will enable the clinicians to make a better judgment about reversibility. Such a policy needs good communication on the goals and endpoints from the start, so that all involved can adjust their expectations if needed (see 7 Chap. 8).  

2.9 

Consequences of Not Admitting a Patient

Not admitting a patient to the ICU does not mean stopping the treatment of the patient. Treatment of a patient is only terminated after the patient has died. Therefore, a clear plan must be made including the goals of treatment for the patient who is not admitted to the ICU, and senior decision-makers must be involved. This requires multi-professional decision-making [31]. If the patient’s condition changes unexpectedly in the course of the disease, the decision not to admit him/her to the ICU may well be reconsidered. It is not a failure to get back to an earlier decision and reverse it rather than inadequately stick to it. This holds true of course also for the decision having admitted a patient to the ICU. Take-Home Messages 55 The first pillar of intensive care medicine is to formulate an adequate medical indication. 55 ICU admission is a decisive moment for the critically ill patient, and medical expertise is required to estimate the potential benefit. 55 Not admitting a patient to the ICU does not mean not treating the patient. 55 Buying time by an ICU admission in order to have more complete information on the reversibility of the present condition, concerning both pre-­admission information and information during treatment, may decrease the prognostic uncertainty. 55 A decision to admit or not to admit can be reversed at a later stage if the conditions (unexpectedly) change. 55 Prerogative reasons to admit or not to admit a patient to the ICU may exist (e.g., social pressure, financial incentives, physicians’ feelings of guilt, aggression by family members).

Summary Admission to an ICU is literally a life event for a patient. Patients pay a heavy price and make in fact an enormous investment as to the burden treatment in an ICU entails for the sake of a reasonable benefit [32]. Medical expertise, interprofessional multidisciplinary decision-making, and involvement of senior consultants are paramount in order to arrive at the best possible decision under the circumstances prevailing [8, 25]. Decisions are not necessarily valid forever, advanced insight and new available information may be the incentive and argument for another decision to be taken. However, it is of utmost importance that it should not be considered as a failure to come back to a decision that has been made earlier.

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References

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1. Bauer J, Brüggmann D, Klingelhöfer D, et al. Access to intensive care in 14 European countries: a spatial analysis of intensive care need and capacity in the light of COVID-19. Intensive Care Med. 2020;46:2026–34. 2. OECD.  Health at a glance 2021: OECD indicators. Paris: OECD Publishing; 2021. https://doi. org/10.1787/ae3016b9-­en. 3. OECD. Intensive care beds capacity. Paris: OECD Publishing; 2021. https://www.­oecd.­org/coronavirus/en/data-­insights/intensive-­care-­beds-­capacity. Accessed 7 Mar 2022 4. Wikipedia. List of countries by hospital beds. https://en.­wikipedia.­org/wiki/List_of_countries_ by_hospital_beds. Accessed 3 Apr 2022. 5. Tyrrell CSB, Mytton OT, Gentry SV, et al. Managing intensive care admissions when there are not enough beds during the COVID-19 pandemic: a systematic review. Thorax. 2021;76:302–12. 6. Stretch B, Shepherd SJ. Criteria for intensive care unit admission and severity of illness. Surgery. 2021;39:22–8. 7. Girbes AR, Beishuizen A.  Interfacing the ICU with the general practitioner. Crit Care. 2010;14:172–3. 8. Bion J, Dennis A. ICU admission and discharge criteria. In: Webb A, Angus D, Finfer S, Gattinoni L, Singer M, editors. Oxford textbook of critical care. 2nd ed. Oxford: Oxford University Press; 2016. 9. Wunsch H, Linde-Zwirble WT, Harrison DA, et al. Use of intensive care services during terminal hospitalizations in England and the United States. Am J Respir Crit Care Med. 2009;180:875–80. 10. Dijkema LM, Ligtenberg JJ, Zijlstra JG, et al. Physician staffing models and patient safety in the ICU. Chest. 2009;136:1443. 11. Robert R, Reignier J, Tournoux-Facon C, Association des Réanimateurs du Centre Ouest Group, et al. Refusal of intensive care unit admission due to a full unit: impact on mortality. Am J Respir Crit Care Med. 2012;185:1081–7. 12. Garrouste-Orgeas M, Montuclard L, Timsit JF, French ADMISSIONREA Study Group, et al. Predictors of intensive care unit refusal in French intensive care units: a multiple-center study. Crit Care Med. 2005;33:750–5. 13. Iapichino G, Corbella D, Minelli C, et al. Reasons for refusal of admission to intensive care and impact on mortality. Intensive Care Med. 2010;36:1772–9. 14. Azoulay E, Pène F, Darmon M, Groupe de Recherche Respiratoire en Réanimation Onco-­ Hématologique (Grrr-OH), et al. Managing critically ill hematology patients: time to think differently. Blood Rev. 2015;29:359–67. 15. Soares M, Fontes F, Dantas J, et al. Performance of six severity-of-illness scores in cancer patients requiring admission to the intensive care unit: a prospective observational study. Crit Care. 2004;8:R194–203. 16. Strand K, Flaatten H. Severity scoring in the ICU: a review. Acta Anaesthesiol Scand. 2008;52:467– 78. 17. Rockwood K, Song X, MacKnight C, et  al. A global clinical measure of fitness and frailty in elderly people. CMAJ. 2005;30(173):489–95. 18. Williams C, Wheeler DW.  Criteria for ICU admission and severity of illness scoring. Surgery. 2009;27:201–6. 19. Wang N, Wang M, Jiang L, et  al. The predictive value of the Oxford Acute Severity of Illness Score for clinical outcomes in patients with acute kidney injury. Ren Fail. 2022;44:320–8. 20. Rahmatinejad Z, Tohidinezhad F, Reihani H, et al. Prognostic utilization of models based on the APACHE II, APACHE IV, and SAPS II scores for predicting in-hospital mortality in emergency department. Am J Emerg Med. 2020;38:1841–6. 21. de Grooth HJ, Geenen IL, Girbes AR, et  al. SOFA and mortality endpoints in randomized controlled trials: a systematic review and meta-regression analysis. Crit Care. 2017;21:38. 22. The National Institute for Care and Health Excellence. COVID-19 rapid guideline: critical care in adults. 2022. https://www.­nice.­org.­uk/guidance/ng191. Accessed 7 Mar 2022. 23. Bassford CR, Krucien N, Ryan M, et al. U.K. intensivists’ preferences for patient admission to ICU: evidence from a choice experiment. Crit Care Med. 2019;47:1522–30. 24. Lang F, Quill T. Making decisions with families at the end of life. Am Fam Physician. 2004;70:719– 23.

23 The Two Pillars of Intensive Care Medicine (I): Medical Indication

25. Kiker WA, Rutz Voumard R, Andrews LIB, et al. Assessment of discordance between physicians and family members regarding prognosis in patients with severe acute brain injury. JAMA Netw Open. 2021;4:e2128991. 26. Vink EE, Azoulay E, Caplan A, et al. Time-limited trial of intensive care treatment: an overview of current literature. Intensive Care Med. 2018;44:1369–77. 27. Harvey DJR, Gardiner D. ‘MORAL balance’ decision-making in critical care. BJA Educ. 2019;19:68–73. 28. Moss M, Good VS, Gozal D, et al. A critical care societies collaborative statement: burnout syndrome in critical care health-care professionals. A call for action. Am J Respir Crit Care Med. 2016;94:106–13. 29. Kleinpell R, Moss M, Good VS, et  al. The critical nature of addressing burnout prevention: results from the critical care societies collaborative’s national summit and survey on prevention and management of burnout in the ICU. Crit Care Med. 2020;48(2):249–53. 30. Kristiansen IS, Førde OH, Aasland O, et al. Threats from patients and their effects on medical decision making: a cross-sectional, randomised trial. Lancet. 2001;357:1258–61. 31. Michalsen A, Long AC, DeKeyser GF, et al. Interprofessional shared decision-making in the ICU: a systematic review and recommendations from an expert panel. Crit Care Med. 2019;47:1258–66. 32. Hatch R, Young D, Barber V, et al. Anxiety, depression and post traumatic stress disorder after critical illness: a UK-wide prospective cohort study. Crit Care. 2018;22:310.

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The Two Pillars of Intensive Care Medicine (II): The Patient’s Wishes and Consent Aimee B. Milliken and Nicholas Sadovnikoff Contents 3.1

Introduction – 26

3.2

Respect for Autonomy and Informed Consent – 26

3.2.1 3.2.2

 ecision-Making Capacity – 27 D Voluntariness – 27

3.3

 aternalism/Parentalism and Shared P Decision-Making – 28 References – 29

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Michalsen et al. (eds.), Ethics in Intensive Care Medicine, Lessons from the ICU, https://doi.org/10.1007/978-3-031-29390-0_3

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nnLearning Objectives 55 By the end of this chapter, readers will understand the relationship between autonomy and informed consent, with focus on the interplay between these two concepts and the related practice of shared decision-making.

3

3.1 

Introduction

In the previous chapter, the indications for patient care in intensive care units were reviewed and established as the first pillar of intensive care medicine. In this chapter, we review the second pillar: the patient’s wishes and informed consent. It is within the purview of providers to present the range of medically appropriate options, and from these options it is within the purview of the patient (or their surrogate) to select the option that best aligns with their goals and values. In order to accomplish this, it is essential that clinicians develop a robust sense of the patients’ preferences to make the most appropriate treatment recommendations. In this chapter, we briefly review the concept of respect for autonomy and then address in greater depth its corollary, the concept of informed consent. We discuss decision-making capacity and voluntariness as essential preconditions to a fully informed consent. Finally, we introduce the practice of shared decisionmaking, which aims to fully elucidate the patient’s wishes in the context of the medical options to co-create a plan of care that is both medically appropriate and ethically sound.

3.2 

Respect for Autonomy and Informed Consent

As described in chapter one, respect for autonomy is a cornerstone of clinical care. It entails acknowledging that patients have a right to self-governance, including the authority to seek understanding, deliberate, manage, and independently choose for themselves [1]. Although the end-result is most commonly a consent “document,” informed consent should be viewed as a process that may evolve over time rather than a stand-alone conversation or a signature on a piece of paper [2]. Beauchamp and Childress describe an informed consent as “an individual’s autonomous authorization of a medical intervention or participation in research.” Under their framework, an “informed consent” must incorporate the following elements [1]: 1. Threshold elements (preconditions) (a) Competence (to understand and decide) (b) Voluntariness (in deciding) 2. Information elements (a) Disclosure (of material information) (b) Recommendation (of a plan) (c) Understanding (of a and b) 3. Consent elements (a) Decision (in favor of a plan) (b) Authorization (of chosen plan) In order to better understand these criteria, it is helpful to explore the threshold elements, particularly competence/capacity and voluntariness.

27 The Two Pillars of Intensive Care Medicine (II): The Patient’s Wishes...

3.2.1 

Decision-Making Capacity

The first threshold element identified by Beauchamp and Childress [1] is competence or decision-making capacity. For the purposes of this chapter, we use the terms “capacity” and “competence” interchangeably, though it should be noted that the former is more often used in clinical contexts and the latter more often used in legal settings [3]. Decision-making capacity is commonly described as being comprised of four components [4, 5]. First, the patient must be able to communicate a choice. Second, the patient must be able to understand the relevant information presented by the clinician. Third, patients must be able to appreciate the situation and its likely consequences and apply this information to themselves. For example, a patient should be able to define the illness, the need for treatment, and the potential outcome. Finally, the patient must be able to rationally assess the information. Capacity is both a decision- and time-specific question. A patient with delirium who “sundowns” may be determined to have decision-making capacity in the morning, but not when reassessed in the evening. Similarly, a patient may have decision-­ making capacity for a low-stakes decision, such as whether or not to permit blood to be drawn, but not have capacity for a higher-risk decision, such as consenting to a complex surgery. The weightier the decision is in terms of its potential consequences, the higher the standard of capacity should be. This is often referred to as the “sliding scale” component of a capacity assessment [6]. When a patient is assessed to lack decision-making capacity, their surrogate should be engaged to provide guidance regarding what the patient would most likely choose, given what is known about their goals, values, and the way they lived their life. If this not known to the surrogate, or there is no such person, the medical team should consider the patient’s “best interest” to decide what a reasonable person would choose under the circumstances. The nuances of these frameworks are reviewed in more detail in 7 Chap. 1.  

3.2.2 

Voluntariness

The second critical threshold element is voluntariness. This requires that capacitated patients make their decisions free from undue influence or coercion, meaning they are not “under the control of another person or condition” [1]. Voluntariness can be difficult to assess. Indeed, it is common for people to make decisions as a function of their social/familial dynamics that differ from what they might otherwise elect if they were not interconnected with others. A patient, for example, might decide to continue pursuing life-sustaining interventions despite their preference to stop them because their spouse asks them to, and under the belief it will be better for the spouse’s bereavement process once the patient dies. Nevertheless, this type of influence is distinct from coercion, where the patient believes there is a threat of harm or disadvantage if a particular path is not chosen, or manipulation, where information is presented in a particular way to achieve the presenter’s desired end [1].

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3.3 

3

Paternalism/Parentalism and Shared Decision-Making

The opposite of an autonomy-focused approach to decision-making is the model of paternalism/parentalism, in which the assumption is made that the clinician’s judgment alone should determine the course of care, irrespective of the patient’s wishes [7]. For much of history, medical care was provided according to this model, and this is still the case in many parts of the world. In more recent decades, particularly in the United States, there has been a shift away from a parentalistic approach and a concerted effort to incorporate the patient’s preferences into the plan of care. This is reflected by the embrace of the concept of shared decision-making (SDM). SDM and inter-professional SDM will be reviewed in greater detail in subsequent chapters. Briefly, however, SDM has been defined as a “a process of communication in which clinicians and patients work together to make optimal healthcare decisions that align with what matters most to patients” [8]. This process incorporates three key components: 1. The communication of clear, accurate, and unbiased medical evidence about treatments and reasonable alternatives—including no intervention—and the risks and benefits of each. 2. Sharing of clinician expertise in communicating and tailoring that evidence for individual patients. 3. Incorporation of patient values, goals, informed preferences, and concerns, which may include treatment burdens. Critically though, a SDM framework relies on the clinician to be more than purely a source of factual information [9]. Under this approach, the clinician must “assume some decision responsibility by providing recommendations based on patient […] values, preferences, or moral frameworks” [10]. The clinician serves an interpretive role: they must develop a robust sense of the patient’s goals and values and contextualize those within the medically acceptable options. Then, using these two sets of data, the clinician makes an informed, yet not paternalistic recommendation. Take-Home Messages 55 The second pillar of intensive care medicine involves the patient’s wishes and informed consent. 55 Respect for autonomy entails acknowledging that patients have a right to self-­ governance, including the authority to seek understanding, deliberate, manage, and independently choose for themselves. 55 An informed consent can be defined as an autonomous authorization of a medical intervention or participation in research and requires that certain threshold elements are achieved including decision-making capacity and voluntariness. 55 The opposite of an autonomy-focused approach to decision-making is the model of paternalism/parentalism, in which the assumption is made that the clinician’s judgment alone should determine the course of care, irrespective of the patient’s wishes. 55 An alternative to paternalism/parentalism is shared decision-making (SDM). SDM is a process of communication in which clinicians and patients work together to make optimal healthcare decisions that align with what matters most to patients.

29 The Two Pillars of Intensive Care Medicine (II): The Patient’s Wishes...

Summary An ethically sound plan of care is one that is both medically indicated and consented to by the patient or their surrogate. Informed consent requires a voluntary, autonomous authorization of a treatment plan by a capacitated patient or their surrogate. An optimal approach to achieving this may be through shared decision-making. Shared decision-­ making requires an understanding of the patient’s goals and values to make an informed recommendation about the treatment plan. Using this framework, clinicians can avoid an overly parentalistic approach to care in which the patients’ values are ignored or alternatively, an overly permissive approach to care that is adherent to patients’ values but may be medically incoherent.

References 1. Beauchamp TL, Childress JF. Principles of biomedical ethics. 8th ed. New York: Oxford University Press; 2019. 2. Milliken A, Sadovnikoff N. How ethics can support clinician caring for critically ill patients. In: Michalsen A, Sadovnikoff N, editors. Compelling ethical challenges in critical care and emergency medicine. Berlin: Springer; 2020. p. 3–9. 3. Buchanan A.  Mental capacity, legal competence and consent to treatment. J R Soc Med. 2004;97:415–20. 4. Appelbaum PS.  Assessment of patients’ competence to consent to treatment. N Engl J Med. 2007;53:1834–40. 5. Appelbaum PS, Grisso T. Assessing patients’ capacities to consent to treatment. N Engl J Med. 1988;319:1635–8. 6. Fletcher JC, Spencer EM, Lombardo PA, editors. Fletcher’s introduction to clinical ethics. 3rd ed. Hagerstown: University Publishing Group; 2005. 7. Jonsen AR, Siegler M, Winslade WJ. Clinical ethics: a practical approach to ethical decisions in clinical medicine. 9th ed. New York: McGraw-Hill; 2022. 8. National Quality Forum. Shared decision making: a standard of care for all patients. 2017. https:// www.­q ualityforum.­o rg/Publications/2017/10/NQP_Shared_Decision_Making_Action_Brief.­ aspx. 9. Kon AA, Davidson JE, Morrison W, et al. Shared decision making in ICUs: an American College of Critical Care Medicine and American Thoracic Society policy statement. Crit Care Med. 2016;44:188–201. 10. Sullivan A, Cummings C. Shared decision-making in the NICU. Neoreviews. 2020;21:e217–25.

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Decision-making Contents Chapter 4 Shared Decision-Making (I): Within the Interprofessional Team – 33 Andrej Michalsen and Hanne Irene Jensen Chapter 5 Shared Decision-Making (II): With Patients and Families – 45 Nancy Kentish-Barnes, Julie Benbenishty, and Monika C. Kerckhoffs Chapter 6 The Significance of Cultural Diversity – 57 Victoria Metaxa, E. Wesley Ely, and Mervyn Mer

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Shared Decision-Making (I): Within the Interprofessional Team Andrej Michalsen and Hanne Irene Jensen Contents 4.1

Introduction – 34

4.2

Clinical Case Example – 35

4.3

I nterprofessional Shared Decision-Making: Definition and Scope of Application – 35

4.4

Recommendations – 38

4.5

Clinical Case Example: Continued – 40

4.6

Special Circumstances – 40 References – 41

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Michalsen et al. (eds.), Ethics in Intensive Care Medicine, Lessons from the ICU, https://doi.org/10.1007/978-3-031-29390-0_4

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nnLearning Objectives 55 This chapter will inform the reader about the process of interprofessional shared decision-­making (IP-SDM) and the scope of its implementation. 55 This chapter will illustrate the utility of IP-SDM based on a clinical case example. 55 This chapter will provide a model for the reader to engage in IP-SDM within and among his/her teams—employing the aid of three recommendations provided— with the goal of improving the quality of the healthcare rendered.

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4.1 

Introduction

Intensive care medicine clinicians help patients and their family members navigate medically difficult phases of their lives. In many countries, an increasing proportion of patients receive care in intensive care units (ICUs). Most critically ill patients are admitted there with a curative goal of treatment, such that they may regain at least their status quo ante. This is generally achieved by acutely stabilizing their threatened or failing vital functions with medications and/or mechanical devices, allowing recovery from an acute or chronic insult to occur. Owing to clinicians’ enhanced education and training as well as to technological advances, many patients now survive severe illnesses and injuries that would have led to their demise only a few decades, if not years ago. However, about 15–30% of patients treated in ICUs will succumb to their condition, often in the context of an assessment that life-sustaining treatments are not (or no longer) medically indicated or seen as appropriate [1–3]. ICU physicians, nurses, and allied health care professionals, hereafter referred to as the ICU team, are not only responsible for the medical treatment of patients, but they also coordinate and incorporate the input of other disciplines and professions involved. Therefore, they serve as a prime source of information, guidance, and care for patients and their families. This breadth of tasks engenders responsibility for informed and thoughtful decision-making in the realms of medical, logistical, sometimes legal, and certainly ethical issues. While there has been significant progress in clinical outcomes over recent years, current treatment decisions in ICUs still face several challenges to high-quality patient- and family-centered care that have not yet been fully elucidated. For instance, improved intensive care has resulted in more patients surviving, but with a reduced quality of life. This entails trade-offs for many patients and their families that the ICU teams need to address [4–7]. Also, the significance of gender differences and structural health inequities adversely affecting disadvantaged groups has received appropriately greater attention recently, without yet having been fully embraced [8– 12]. Furthermore, health care expenditures for intensive care medicine are exorbitantly high in some countries and regions, in significant part due to extensive usage by specific sub-populations—especially elderly and chronically ill patients [13, 14]. However, unjustifiable demands for extensive medical care as well as financial incentives to provide unnecessary or even non-beneficial measures encourage undue overtreatment [15]. Finally, the remarkable technological advances in recent years have all but overrun the humane and interpersonal aspects of care in many places, risking the transformation of medicine into a trade, overlooking the fact that quality care needs far more than apparatus and algorithms [16, 17].

35 Shared Decision-Making (I): Within the Interprofessional Team

Decisions regarding the appropriate extent of treatment for any given patient often touch on patients’, families’, and clinicians’ values, goals, and preferences, and such decisions will have a substantial impact not only on the patients and their course of treatment, but also on the families and clinicians involved. In this context, including the challenges outlined above, well-functioning ICU teams and a good ethical ICU work-climate are important for high-quality care [18, 19]. Unfortunately, successful teamwork is often hampered by discord around uncertain prognostication, disagreement about appropriateness of treatments, insufficient knowledge about patients’ goals of care, a poor working environment, and, perhaps most prominently, a lack of effective communication, collaboration, and decision-making within the team. These deficiencies result in team conflicts, demoralization, moral distress, burnout, medical errors, suboptimal patient care, and poor family engagement and satisfaction [20–24]. To help overcome or best prevent such untoward outcomes, these deficiencies should be addressed through optimization of interprofessional communication and collaboration, specifically through improved interprofessional shared decision-­ making (IP-SDM).

4.2 

Clinical Case Example

An 82-year-old man with diabetes and chronic obstructive pulmonary disease undergoes a major abdominal surgery due to intestinal cancer. A few days postoperatively, the patient’s condition deteriorates with respiratory and circulatory decompensation, and he is admitted to the ICU. Despite support with noninvasive ventilation and vasopressors, the patient’s condition continues to deteriorate during the following days. At this point, the patient no longer has decision-making capacity. Due to the patient’s organ failures, multi-comorbidity, and age, the intensivists assess that the patient is unlikely to recover and therefore favor withdrawing life-sustaining treatment. By contrast, his surgeon wants to continue providing life-sustaining treatment because he believes that because of the operation, he considers the patient to be cancer-free. He also claims that it is every patient’s normal desire to survive—why would he otherwise have consented to the operation in the first place?

4.3 

I nterprofessional Shared Decision-Making: Definition and Scope of Application

IP-SDM is defined as a collaborative process among clinicians that allows for team involvement in important clinical decisions, considering the best scientific evidence available and the combined expertise of clinicians involved, while incorporating the patient’s values, goals, and preferences [25]. Important clinical decisions can relate as much to complex medical or surgical procedures as to ethical quandaries involving the goals and extent of treatment.

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The terms “inter-professional” and “inter-disciplinary” communication and collaboration imply that there are several professions and disciplines, respectively, working together in the care of the same patient to arrive at and implement a mutually endorsed plan. Several publications document variation in the approach to treatment decisions in the ICU, especially concerning complex clinical and ethical issues. Although there is considerable variability among different countries and legislations, recent studies suggest that there is comparable variation within countries or even among clinicians within individual hospitals [1, 25–30]. Indeed, the perspective of an individual health care provider may at times be the most important factor in decision-making processes [28]. A key goal of IP-SDM is to move from individual to team decisions when important clinical issues are at stake. A recent systematic review regarding the benefit of implementing IP-SDM in ICUs identified only a small quantity of relevant research characterized by a relatively low quality of the evidence [25]. Nevertheless, this review, as well as other recent publications, corroborates the concept that adequate interprofessional communication and IP-SDM facilitate reaching a durable decision regarding the extent of treatment, thereby reducing the suffering of patients and discord within the team [25, 31–35]. Conceptually, decision-making can be accomplished on four different levels, ranging from individual decisions by one clinician to fully shared decision-making by a group of clinicians (. Table 4.1) [36]. Clinical decisions are a daily responsibility for ICU teams. The decisions are often appropriately made by individual clinicians (level 1), or perhaps after a brief discussion with other members of the team (level 2), as with decisions such as which antibiotic to use. For more complicated or nuanced issues, such as when to administer vasopressors or whether to call for an immediate surgical procedure, a more extended discourse among clinicians may be undertaken (level 3). Complex decisions, however, with potentially far-reaching consequences, such as the intensification or the limitation of life-sustaining treatments (level 4), may warrant the activation of IP-SDM [25, 36]. The four levels are intended to provide a conceptual guide to the process of decision-making, rather than to serve as rigid or mutually exclusive approaches. Furthermore, the urgent need for a clinical decision may prevent the utilization of IP-­SDM, but this may at the same time identify the need for a subsequent team debriefing.  

37 Shared Decision-Making (I): Within the Interprofessional Team

.       Table 4.1  Levels of interprofessional collaboration in decisions (modified from [36]) Name of level

Definition

Example

Appropriate use

Individual decision (level 1)

A clinical decision is made without involvement of another healthcare professional

The choice of a diuretic for a given patient with a known medical condition

A clinical decision made by one healthcare professional according to known practice guidelines in an unambiguous clinical situation

While being suctioned by a nurse, a patient suddenly reverts to a fatal cardiac rhythm. The nurse calls for a physician and starts resuscitation immediately

In an emergency when other healthcare professionals are not available

Relay of information from one healthcare professional to another, to be used for his/her decision-making purposes

Relaying information about the patient’s most current vital signs in a way that informs a unilateral decision to obtain a certain laboratory test

Sharing information about a patient or family member by a healthcare provider. This information may be unknown to others and might prove useful in their practice

A description of the clinical factors and physiological underpinnings behind the decision not to continue antibiotic treatment

Explaining the reasoning behind decisions that were made by other team members not involved in the present decision-­ making process

Deliberation (level 3)

A two-way flow of information with some discussion, yet a decision is not made with shared decision-making

During rounds there is a discussion between nurses and physicians as to why a specific patient should or should not be isolated, tested, and treated for presumed 3-MRGN infection. The physician then decides regarding these three issues

The patient is assessed independently by different healthcare professionals who come to their own conclusions about patient care. These conclusions are then discussed. A final decision is made by one of the providers

Shared decision-­ making (level 4)

Each healthcare provider presents their information, a deliberation takes place, followed by a joint decision by participating providers

A patient with several chronic diseases is admitted to the ICU and is presently in multi-organ failure. The prognosis is very poor. A three-day trial period is conducted without any improvement. After joint discussions among the ICU team and involvement of the family, a decision is made to change the treatment goal to comfort measures only

Complex patient care decisions where different healthcare providers can contribute their expertise to a decision. A discussion is held between the stakeholders, a joint decision is made and followed. The decision may involve ethical dilemmas, where no decision is totally correct or incorrect

Information exchange (level 2)

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4.4 

Recommendations

Given the current overall evidence regarding the implementation of IP-SDM, the following three recommendations need to be viewed as conditional recommendations for the time being. Recommendation 1

4

ICU clinicians should consider engaging in an IP-SDM process to promote the most appropriate and balanced decisions. Ideally, the appropriate level of interprofessional decision-making is that which results in the best decision for the individual patient and ultimately leads to the best possible outcome for the patient, his/her family, and the team. IP-SDM is a process that incorporates the entire interprofessional ICU team and, when appropriate, consultants and others involved in the patient’s care. The underlying maxim is to engage individual clinicians as team members who are empowered and involved. While it addresses some of the same important issues, IP-SDM is distinct and separate from shared decision-making with patients and their families. The latter describes processes between the teams and the patients and their families and has been widely and extensively described [37–39]; the former delineates the processes within a team and has only recently been described in depth [25]. There is often overlap in these two processes, and there may also be overlap in the composition of the groups involved, but it can be helpful to separate them conceptually. Frequently, discussions within the team will influence discussions with the patients and/or families and vice versa. Generally, the ICU team should first arrive at a joint decision about medically reasonable treatment options as outlined above; these options should then be discussed with patients and/or family members, using a shared decision-making model [15, 22]. When making such important clinical decisions, each healthcare provider’s level of involvement in IP-SDM may be influenced by many different determinants, such as their individual judgment regarding the patient’s prognosis, their experience and expertise, their hierarchical status in the ICU or hospital, their personal, cultural, and religious values, and the work-climate within which they function [18, 20, 21, 24, 28, 40–42].]. Importantly, a lack of recognition of value differences among the team members can lead to unbalanced decisions and moral distress among clinicians [20– 22, 25, 43]. Perhaps the most practical rationale for implementing IP-SDM is the premise that making use of the combined expertise and knowledge of all team members involved can lead to better-reasoned and more robust decisions. If a particular decision is contrary to one of the team member’s reasoned assessment or contrary to his/her professional or religious values, then open deliberation and IP-SDM may be essential to ensure high quality of the decision-making process.

39 Shared Decision-Making (I): Within the Interprofessional Team

Recommendation 2 Clinicians and hospital administrators should implement strategies to foster an ICU working climate oriented toward IP-SDM. Successful IP-SDM depends on its participants possessing appropriate interpersonal skills as well as on a good ICU climate. Organizational theory and research have shown that the climate and culture within work-units exert an important influence on outcomes, such as unit performance [44]. Many and diverse factors can affect the influence of climate and culture on performance, especially management skills, adequacy of staffing and resources, effective leadership, and a robust safety and ethics climate [18, 20–22, 25, 43]. For ICUs, there exists at best limited evidence that specific interventions to improve the work environment will lead to improved organizational performance or patient outcomes. Overall, however, skilled communication, true collaboration, and effective decision-making are recognized as imperative in establishing and sustaining healthy work environments. Consequently, we propose that ICU clinicians and leaders should foster an environment in which efforts are consistently made to seek and incorporate the perspectives of the whole team in the decision-making process.

Recommendation 3 Clinicians should consider incorporating the basic principles of the VALUE TEAM-­ template as a structural approach to respectful communication when implementing IP-­SDM. Many clinical decisions depend on the input of multiple individual clinicians, often from different disciplines and professions and with potentially conflicting perspectives. Therefore, IP-SDM relies upon basic principles of respectful communication [18]. Using a structured approach for such communication may reduce communication failures, improve information transfer, and increase consensus around treatment decisions while enhancing the job satisfaction of the ICU team. We recommend incorporating the newly designed “VALUE TEAM-template” (. Table 4.2), based on the previously validated VALUE-template [45, 46], as a systematic approach to support IP-SDM within the interdisciplinary ICU team. This includes several elements as aids for respectful communication. Occasionally, the need for advice regarding ethical or legal matters may arise and should be sought by the ICU team, from ethics consultants or from institutional legal counsel.  

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.       Table 4.2  The VALUE-TEAM-Template (reprinted with permission from [25])

4

V

value statements from all of the members of the interprofessional team, including, among others, physicians, nurses, physiotherapists, clergy, psychologists, and ethicists

A

acknowledge emotions

L

listen to each other

U

understand the team members as integral persons, including their commitments to patients and high-quality patient care

E

elicit the expert suggestions of team members and make use of their specific expertise

T

tie the decision to the best evidence available

E

elaborate on the patient’s values, goals, and preferences

A

address diverse opinions and seek consensus among team members

M

make the best decision weighing reasonable medical options with the patient’s goals and the quality of life he/she would want to achieve after their stay in the ICU

4.5 

Clinical Case Example: Continued

As the two specialties cannot reach consensus as to the extent of further treatment, an interprofessional conference is convened, with consultants from the two specialties, the head nurse of the ICU, the social worker, and the patient’s general practitioner taking part. The patient’s current condition, i.e., multi-organ failure, the medical treatment options, and his potential future medical status are discussed. An exploration of the patient’s values and preferences is pursued, clarifying that he would not want to bear living in a permanent dependency upon others, even not from his family. It is sorted out that consenting to the operation did not mean consenting to indefinite dependence on life-sustaining therapies. An interprofessional decision is made not to escalate the life-sustaining treatment, but to continue the current treatment level for a time-limited trial of another 2 days to allow for any evidence of improvement. Subsequently, a family meeting is arranged with participation of the ICU ­physicians, relevant consultants, and the head nurse to review with the family the patient’s condition, including his prognosis, and inform them as to the extent of treatment. The family is able to understand the medical reasoning and corroborates that the patient would not be accepting of a lower quality of life. The time-limited treatment of continued life-sustaining measures is implemented and documented explicitly in the chart. The patient dies 2 days after the interprofessional conference due to persisting multi-organ failure.

4.6 

Special Circumstances

Special circumstances, such as mass-casualty scenarios, terrorist attacks, or pandemics, can challenge health care systems locally, nationally, or even worldwide, overwhelming the resources generally available to the populace. Health care guidelines

41 Shared Decision-Making (I): Within the Interprofessional Team

for these circumstances are frequently inadequately developed, poorly disseminated, and devoid of plans for implementation. The focus of care in such catastrophes necessarily must shift from a deontological to a utilitarian approach. The health care teams in charge under these circumstances may face profoundly difficult challenges, such as the prioritization of allotment of essential treatments and resources. Here they must strive for best target-oriented communication and cooperation, and using IP-SDM is strongly encouraged [9, 47–50]. Take-Home Messages 55 Interprofessional shared decision-making (IP-SDM) is a collaborative process among clinicians that allows for team involvement in important clinical decisions. 55 IP-SDM is distinct and separate from shared decision-making with patients and families. 55 IP-SDM promotes identifying the most appropriate decisions. 55 Successful IP-SDM depends on interpersonal skills as well as on a collaborative climate in the intensive care unit. 55 Using a structured approach such as the VALUE-TEAM template may support IP-SDM.

Summary High-quality care for patients and their families in ICUs requires optimization of interprofessional collaboration and communication to achieve sound and durable team decisions. Therefore, clinicians should consider utilizing an IP-SDM model that allows for the exchange of information, deliberation, and joint attainment of a treatment decision in a structured manner—as outlined in the recommendations above. IP-SDM is neither intended to be used for routine and straightforward decisions nor intended to promote any specific clinical decision; it rather provides a range of approaches to the process of decision-­ making within the interprofessional team. Ultimately, fostering the quality of ICU team decisions and work environments will improve outcomes for patients, family members, and clinicians.

References 1. Lobo SM, De Simoni FHB, Jakob SM, et al. Decision-making on withholding or withdrawing life support in the ICU: a worldwide perspective. Chest. 2017;152:321–9. 2. Orford NR, Milnes SL, Lambert N, et al. Prevalence, goals of care and long-term outcomes of patients with life-limiting illness referred to a tertiary ICU. Crit Care Resusc. 2016;18:181–8. 3. Vincent JL, Marshall IC, Namendys-Silva SA, et al. Assessment of the worldwide burden of critical illness: the intensive care over nations (ICON) audit. Lancet Respir Med. 2014;2:380–6. 4. Vanhorebeek I, Latronico N, Van den Berghe G.  ICU-acquired weakness. Intensive Care Med. 2020;46:637–53. 5. Cameron JI, Chu ML, Matte A, et al. One-year outcomes in care givers of critically ill patients. N Engl J Med. 2016;374:1831–41. 6. Schmidt M, Azoulay E. Having a loved one in the ICU: the forgotten family. Curr Opin Crit Care. 2012;18:540–7. 7. Oeyen SG, Vandijck DM, Benoit DD, et al. Quality of life after intensive care: a systematic review of the literature. Crit Care Med. 2010;38:2386–400.

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8. Lat TI, McGraw MK, White HD. Gender differences in critical illness and critical care research. Clin Chest Med. 2021;42:543–55. 9. White DB, Lo B.  Mitigating inequities and saving lives with ICU triage during the COVID 19 pandemic. Am J Resp Crit Care Med. 2021;203:287–95. 10. Rud KE, Kisson N, Limmathurotsakul D, et al. The global burden of sepsis: barriers and potential solutions. Cirt Care. 2018;32:232. 11. Kwizera A, Baelani I, Mer M, et al. The long sepsis journey in low- and middle-income countries begins with a first step … but on which road? Crit Care. 2018;22:64. 12. Marmot M.  Social justice, epidemiology and health inequalities. Eur J Epidemiol. 2017;32: 537–46. 13. Lindemark F, Haaland ØA, Kvåle R, et al. Costs and expected gain in lifetime health from intensive care versus general ward care of 30,712 individual patients: a distribution-weighted cost-­ effectiveness analysis. Crit Care. 2017;21:220. 14. Chin-Yee N, D’Egidio G, Thavorn K, et al. Cost analysis of the very elderly admitted to intensive care units. Crit Care. 2017;21:109. 15. OECD. Tackling wasteful spending on health. Paris: OECD Publishing; 2017. 16. Tandon S, Medamana J, Roccaforte D. Searching for humanity in the time of COVID. Intensive Care Med. 2021;47:500–2. 17. Maio G. The lost art of abstaining. Dtsch Med Wochenschr. 2015;38:2386–400. 18. Van den Bulcke B, Metaxa V, Reyners AD, et  al. Ethical climate and intention to leave among critical care clinicians: an observational study in 68 intensive care units across Europe and the United States. Crit Care Med. 2020;46:46–56. 19. Golem F, Schreck JS.  The journey to interprofessional collaborative practice: are we there yet? Pediatr Clin North Am. 2018;65:1–12. 20. Benoit DD, Jensen HI, Malmgren J, et al. Outcome in patients perceived as receiving excessive care across different ethical climates: a prospective study in 68 intensive care units in Europe and the USA. Intensive Care Med. 2018;44:1039–49. 21. Dzeng E, Curtis JR. Understanding ethical climate, moral distress, and burnout: a novel tool and conceptual framework. BMJ Qual Saf. 2018;27:766–70. 22. Moss M, Good VS, Gozal D, et al. An official critical care societies collaborative statement: burnout syndrome in critical care healthcare professionals: a call for action. Crit Care Med. 2016;44:1414–21. 23. Valentin A. Approaches to decreasing medication and other care errors in the ICU. Curr Opin Crit Care. 2013;19:474–9. 24. Smith AK, White DB, Arnold RM.  Uncertainty—the other side of prognosis. N Engl J Med. 2013;368:2448–50. 25. Michalsen A, Long AC, DeKeyser-Ganz F, et al. Interprofessional shared decision-making in the ICU: a systematic review and recommendations from an expert panel. Crit Care Med. 2019;47:1258–66. 26. Avidan A, Sprung CL, Schefold JC, et al. Variations in end-of-life practices in intensive care units worldwide (Ethicus-2): a prospective observational study. Lancet Respir Med. 2021;9:1101–10. 27. Sprung CL, Ricou B, Hartog CS, et al. Changes in end-of-life practices in European intensive care units from 1999 to 2016. JAMA. 2019;322:1692–704. 28. Long AC, Brumback LC, Curtis JR, et  al. Agreement with statements on end-of-life care: a description of variability at the level of the provider, hospital, and country. Crit Care Med. 2019;47:1396–401. 29. Mark NM, Rayner SG, Lee NJ, et al. Global variability in withholding and withdrawal of lifesustaining treatment in the intensive care unit: a systematic review. Intensive Care Med. 2015;41:1572–85. 30. Sprung CL, Truog RD, Curtis JR, et al. Seeking worldwide professional consensus on the principles of end-of-life care for the critically ill. The consensus for worldwide end-of-life practice for patients in intensive care units (WELPICUS) study. Am J Resp Crit Care Med. 2014;190:855–66. 31. Kerckhoffs MC, Senekal J, van Dijk D, et  al. Framework to support the process of decision-­ making on life-sustaining treatments in the ICU: results of a Delphi study. Crit Care Med. 2020;48:645–53. 32. Wei H, Corbett RW, Ray J, et al. A culture of caring: the essence of healthcare interprofessional collaboration. J Interprof Care. 2020;34:324–31.

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33. Ervin JN, Kahn JM, Cohen TR, et  al. Teamwork in the intensive care unit. Am Psychol. 2018;73:468–77. 34. Manias E. Effects of interdisciplinary collaboration in hospitals on medication errors: an integrative review. Expert Opin Drug Saf. 2018;17:259–7535. 35. Reeves S, Pelone F, Harrison R, et  al. Interprofessional collaboration to improve professional practice and healthcare outcomes (review). Cochrane Database Syst Rev. 2017;6:CD000072. 36. DeKeyser Ganz F, Engelberg R, Torres N, et al. Development of a model of interprofessional shared clinical decision making in the ICU: a mixed methods study. Crit Care Med. 2016;44:680–9. 37. Davidson JA, Aslakson RA, Long AC, et al. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med. 2017;45:103–28. 38. Kon AA, Davidson JE, Morrison W, et al. Shared decision-making in ICUs: an American College of Critical Care Medicine and American Thoracic Society policy statement. Crit Care Med. 2016;44:188–201. 39. Shay LA, Lafata JE. Where is the evidence? A systematic review of shared decision making and patient outcomes. Med Decis Making. 2015;35:114–31. 40. Sprung CL, Jennerich AL, Joynt GM, et al. The influence of geography, religion, religiosity, and institutional factors on worldwide end-of-life care for the critically ill: the WELPICUS study. J Palliat Care. 2021. https://doi.org/10.1177/08258597211002308. [Epub ahead of print]. 41. Frost DW, Cook DJ, Heyland DK, et al. Patient and healthcare professional factors influencing end-of-life decision-making during critical illness: a systematic review. Crit Care Med. 2011;39:1174–89. 42. Sprung CL, Maia P, Bulow HH, et al. The importance of religious affiliation and culture on end-­ of-­life decisions in European intensive care units. Intensive Care Med. 2007;33:1732–9. 43. Van den Bulcke B, Piers R, Jensen HI, et al. Ethical decision-making climate in the ICU: theoretical framework and validation of a self-assessment tool. BMJ Qual Saf. 2018;27:781–9. 44. Kozlowski SW, Ilgen DR.  Enhancing the effectiveness of work groups and teams. Psychol Sci Public Interest. 2006;7:77–124. 45. Curtis R, White DB.  Practical guidance for evidence-based ICU family conferences. Chest. 2008;134:835–43. 46. Lautrette A, Darmon M, Megarbane B, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med. 2007;356:469–78. 47. Dufner A. Withdrawal of intensive care during times of severe scarcity: triage during a pandemic only upon arrival or with the inclusion of patients who are already under treatment? Bioethics. 2021;35:118–24. 48. Marckmann G, Neitzke G, Schildmann J, et  al. Decisions on the allocation of intensive care resources in the context of the COVID-19 pandemic. Med Klin Intensivmed Notfmed. 2020;115(Suppl 3):115–22. 49. Michalsen A, Vergano M, Quintel M, et  al. Epilogue: critical care during a pandemic—a shift from deontology to utilitarianism? In: Michalsen A, Sadovnioff N, editors. Compelling ethical challenges in critical care and emergency medicine. Berlin: Springer. 2020. p. 157–166. 50. Nates JL, Nunnally M, Kleinpell R, et  al. ICU admission, discharge, and triage guidelines: a framework to enhance clinical operations, development of institutional policies, and further research. Crit Care Med. 2016;44:1553–602.

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Shared Decision-Making (II): With Patients and Families Nancy Kentish-Barnes, Julie Benbenishty, and Monika C. Kerckhoffs Contents 5.1

Introduction – 46

5.2

The Relevance of Shared Decision-Making – 46

5.3

 hared Decision-Making in Critically Ill Patients S at Time of ICU Admission – 47

5.4

 amilies in the ICU: Shared Decision-Making F in a Context of High Emotional Distress – 47

5.5

I mpact of Shared Decision-Making on Families’ Well-Being – 48

5.6

Team-Centered Challenges – 49

5.7

Strategies to Improve Shared Decision-Making – 50

5.7.1 5.7.2 5.7.3 5.7.4 5.7.5

F rameworks and Recommendations – 50 Family Conferences: The VALUE Approach – 51 Support for the Family – 52 Dealing with Discordance and Conflict – 53 Mediation – 53

References – 54

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Michalsen et al. (eds.), Ethics in Intensive Care Medicine, Lessons from the ICU, https://doi.org/10.1007/978-3-031-29390-0_5

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nnLearning Objectives 55 In this chapter, students will become familiar with step-by-step processes in developing shared decision-making practice. 55 Students will be exposed to timing, agenda, items to be addressed in shared decision-­making meetings. 55 Students will learn how to individualize patient-/family-centered decision-making. 55 Students will learn how to utilize interdisciplinary teams to better facilitate shared decision-making.

5

5.1 

Introduction

Patients and families generally wish to be involved in important medical decisions through a process known as “shared decision-making.” Shared decision-making (SDM) is a process of communication between clinicians and patients or family members that involves the following steps: (1) discussing the nature of the decision to be made; (2) exchanging relevant medical information and information about the patient's values; (3) checking for understanding of information; (4) discussing preferred roles in decision-making; and (5) achieving consensus about the treatment course most consistent with the patient’s values and preferences [1]. This approach to decision-making is different to paternalism, in which the physician makes the clinical decision with mere patient or family assent, and to informed choice, in which the physician only provides information, and the patient or family makes the final decision after receiving this information. In this chapter, we will see that involving patients and/or family members in SDM in the intensive care unit (ICU) can be a challenging task, specifically when patients lack decision-making capacity, when family preferences for decision-making vary and when emotional distress is high. We also describe strategies to help clinicians to better involve patients and families in decision-­making.

5.2 

The Relevance of Shared Decision-Making

SDM is a central component of patient-centered care in the ICU. SDM must be consistent with ethical principles and with patients’ and surrogates’ preferences. The American College of Critical Care Medicine defines shared decision-making as “a collaborative process that allows patients, or their surrogates, and clinicians to make health care decisions together, taking into account the best scientific evidence available, as well as the patient’s values, goals, and preferences” [2]. In the ICU, difficult choices arise, and important decisions are made. Clinicians offer their expertise, scientific knowledge, and experience to improve their patients’ health status, yet they still need to involve the patients and/or their families to ensure that the decisions made are respectful of the patients’ values, goals, and preferences. Many international studies confirm that shared decision-making significantly contributes to improve patient and family satisfaction regarding ICU care and the ICU team [3–5].

47 Shared Decision-Making (II): With Patients and Families

5.3 

 hared Decision-Making in Critically Ill Patients at Time S of ICU Admission

Patients in ICUs are some of the most vulnerable in any acute hospital. The patients' health deterioration usually occurs prior to the patient’s arrival in an ICU and marks a fundamental change. The traditional consent model for medical treatment is often shortened, and ICU physicians may have to adopt a paternalistic approach. Shared decision-making in critically ill patients can be challenging because patients and ICU physicians usually have no established relationship and decisions can be time critical. Achieving agreement as to the extent of treatment requires a balance of respect for autonomy and beneficence and/or management of resources. The emotional stress of the life-threatening situation on the patient and the fact that the baseline mental status is often unknown to the clinicians may make it difficult to determine competency for decision-making, especially in cases of refusal of treatment [6]. While patient autonomy is essential, physicians may sometimes give priority to their own professional judgment to achieve the best possible outcome for patients. In the specific context of the Emergency Department (ED), recent qualitative research shows specific emotional and logistical challenges to SDM, such as difficulty building trust, the challenges of uncertainty, lack of follow-up care, and the physical space of the ED [7]. Similar challenges are experienced in the ICU and more specifically lack of information about long-term outcomes and recovery [8].

5.4 

 amilies in the ICU: Shared Decision-Making in a Context F of High Emotional Distress

Patients in the ICU are critically ill and are often mechanically ventilated, on high doses of organ-sustaining medication and/or agitated. Therefore, they regularly lack decision-making capacity and clinicians must turn to their families to learn about their values. Thus, families should not be considered only visitors, they play important roles in information sharing and should be active partners in SDM. As defined by the American College of Critical Care Medicine [2], the term “family” should be used in its broadest sense to include “all individuals whom the patient considers family, whether related or unrelated to the patient, including those with whom the patient has a significant relationship and those who provide support to the patient.” Ideally, the patient should choose which of his relatives should be involved. When this is not possible, discussion between relatives and clinicians will enable to identify the surrogate. Often, a legal surrogate needs to be appointed by a designated court. As all families are unique, there is a spectrum of role preferences, ranging from letting the physician decide to assuming responsibility for the final decision. Families often describe one of their roles in the ICU as being the patient’s “historian” (inform the team of the patient’s prior medical status, history, and wishes) and “facilitator” (translating, explaining, and interpreting information for both the patient and the team) [9]. Families can help the team understand the patient as a person and help the team thus respect that person by proposing patient-targeted care. Sharing valuable information with the team is perceived as an important role, sometimes as the only role they want or are able to endorse.

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Preferences for decision-making can vary. Some families may want to leave the physician decide independently and this choice must be honored. For others, participating in the deliberation process is important: listening to the team’s expertise and recommendations, sharing their opinion, asking questions, but leaving the decision to the medical team. Indeed, some families do not want to share the burden of decision-­making with the clinicians. Others, however, may want to feel part of the decision itself, sometimes going as far as actually making the decision—which to general European understanding, however, cannot overrule a medical decision to not apply a treatment, even if demanded by the patient or family. Cultural context impacts on these possible roles: for example, family responsibility for the decision to withdraw life-sustaining treatment is possible in the United States, whereas in France, this responsibility can only be the physician’s. In a study from the United States [10], concerning value-laden decisions (resuscitation preferences), 10% of surrogates preferred to decide independently, 45% preferred to decide after considering the physician’s recommendations, 40% preferred shared responsibility, and 5% preferred the physician decides either after considering the family’s opinion or independently. A study from France shows that only 39% of ICU physicians had involved family members in decisions. A desire to share in decision-making was expressed by only 47% of family members, but only 15% of family members did share in decision-making [11]. In some situations, patients and family members may need to consult with their spiritual or religious leaders and involve them in the SDM conversations [12, 13]. Adapting the decision-making process to the family’s preferences is thus fundamental, and guidelines must be adapted to have meaning in each specific cultural context.

5.5 

Impact of Shared Decision-Making on Families’ Well-Being

A qualitative study [14] investigated physician and nurse behaviors families found supportive and behaviors that increased their burden. Timely communication, open discussion about families’ roles, facilitating family consensus, and providing adapted emotional support are helpful. Behaviors that made families feel excluded or increased their burden comprised, among others, postponing discussions about treatment withdrawal, delaying withdrawal once scheduled, placing the full burden of decision-making on one person, withdrawing from the family, and defining death as a failure. In many studies, participation in care, discussions, and decisions is listed among the factors that increase family satisfaction [15]. For some families however, sharing in decisions can result in substantial psychological burden: in a study from France, families involved in ICU end-of-life medical decisions presented higher risk of developing posttraumatic stress symptoms 3 months after the patient’s death [16]. A systematic review found that at least one-third of surrogates report negative emotional effects lasting months, and sometimes years, after making treatment decisions for others, including stress, guilt, and doubt about whether they made the right choice [17]. These results raise questions as to how family members are involved and what specific factors during the SDM process are associated with increased psychological

49 Shared Decision-Making (II): With Patients and Families

distress. It is important that during the communication process, the ICU clinicians emphasize that the family members are not responsible for the medical side of decision-­making, however their input is essential. Future research is necessary to develop ways to increase support and reduce this burden [18]. Involving the family in the decision-making process raises further complex challenges. First, in the ICU, families suffer from high levels of emotional distress, such as symptoms of anxiety, depression, and acute stress [19]. They may experience feelings of vulnerability and guilt, as well as daytime sleepiness that can impair their ability to make decisions. Second, not all patients discuss their wishes with their family. Family members may feel at a loss and not able to correctly describe their loved-­ one’s goals and preferences. Third, the family members may have difficulty shifting their perspective from what they want to what they believe the patient wants. This can also be true in other decisional contexts, such as organ donation. Families may defend their own best interests rather than the patient’s [20, 21]. Fourth, obstacles to shared decision-making include difficulties experienced by families in understanding the information they receive. Studies have shown that families only understand half of the information given by the physician [21], and they may also unconsciously make decisions without clearly understanding implications and outcomes. Last, clinicians may sometimes be concerned that families pressure the patient to adopt their own preferences, thus violating the patient’s autonomy. In situations of potential coercion or manipulation, clinicians may need to discuss with patients in private goals of care and family dynamics in order to adapt decision-making to the patient’s preferences. Some patients may wish to be free of family influence, while others may prefer to adjust to their family’s position, thus requiring that clinicians consider the patient’s and the family’s mutual interests [22]. An interesting qualitative study shows that SDM can be a struggle for families [23]. Indeed, they may experience significant emotional conflict as they wish to act in accordance with their loved-one’s values but without feeling responsible of the patient’s death. They may fear that their lay involvement could be a barrier to a chance of recovery. Additionally, they have their family’s well-being at heart and involvement can increase the risk of tensions or conflicts [24]. Another qualitative study exploring family perceptions after ICU discharge showed that family members were aware of aspects they missed during the patient’s ICU stay, such as not feeling included in ICU treatment decisions and a lack of information about long-term outcomes and recovery. When looking back, they felt they would have benefited from more open conversations about SDM as well as more information on long-term outcomes [8].

5.6 

Team-Centered Challenges

SDM does not only concern the patient, the family, and the surrogate decision-­ maker. Other challenges remain and concern the ICU team. Research has shown the importance of quality communication. The way the physician conveys the information may influence the choices made by the patients and the families. SDM assumes that the ICU staff can convey medical information in a simple and readily understandable manner that allows the patient or family to grasp the nuances and conse-

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quences of each decision, without causing angst in families and patients. Among others, timing of the decision is also important. Rapid progression of a life-­ threatening illness can lead to rapid decision-making and insufficient time to build a trusting relationship with the family members. Qualitative research shows that the main struggles with SDM encountered by ICU physicians include uncertainty about long-term health outcomes, time constraints, feeling pressure because of having final responsibility and a fear of losing control. ICU nurses also report the need to strengthen their role in incorporating non-medical information in the ICU decision-making process and as liaison between physicians and patients and family [8].

5 5.7 

Strategies to Improve Shared Decision-Making

5.7.1 

Frameworks and Recommendations

To guide the process of decision-making on continuing or limiting life-sustaining treatments in the ICU, a decision-making framework can be used. Such a decision-­ making framework can be seen as a protocol that describes the various steps in the complex process of shared decision-making in the ICU. The use of a framework is a method to promote a decision-making process that is transparent for all stakeholders, ensure participation of the patient and/or surrogate decision-makers, thereby enhancing goal-concordant care. A framework relies on two pillars, standardizing and individualizing. The description of items in the shared decision-making process ensures a standardized format that is applicable on ICU patients regardless of the physician in charge. Most decision-­making frameworks suggest the timing of family meetings, the agenda of these meetings, and the items that should be addressed to assess the appropriateness of life-sustaining ICU treatments [25, 26]. Decision-making will be more individualized when decisions are based on patient-­ centered prognostic factors and personal preferences. By integrating antecedent patient characteristics like comorbidities, functional dependency, and frailty, the prediction of long-term survival will be more accurate [27–30]. In addition, the framework should describe how and when preferences are elicited to align ICU care with future goals of care. Previous studies have shown that even in patients with a high risk of death, preferences and quality of life considerations are only discussed in the minority of ICU family meetings [31, 32]. Moreover, patients who defined goals of care in the prehospital setting did not automatically receive less aggressive ICU care [33]. A decision-making framework can serve as a local protocol that enhances timely, personalized and proportional decision-making. An example of a local decision-­ making framework is depicted in . Fig. 5.1. In this framework, family meetings are combined with interprofessional shared decision-making referred to as time-out meeting. It is recommended to use a decision-making framework to support the process of decision-making of life-sustaining treatments in the ICU. The framework should be customized to suit the local situation, for example, integrate social workers or the  

51 Shared Decision-Making (II): With Patients and Families

..      Fig. 5.1  Example of a local decision-making protocol (Reprinted with permission from Kerckhoffs M. Prognosis, proportionality and preferences: Deciding on continuing or limiting intensive care treatment” [PhD Thesis]. Utrecht, Utrecht University, 2020)

palliative care team when available. Key items should focus on a clear description of the process and on how the ICU team integrates interprofessional shared decision-­ making with shared decision-making with the patient and/or surrogate decision-­ makers [34]. In incapacitated ICU patients, as surrogate-decision makers are inclined to express patient preferences, a major pitfall lays in their request for unlimited ICU treatments dictated by insecurity or feelings of guilt and fear. However, studies report that one-third of surrogates incorrectly predicts treatment preferences, both underand overestimating preferences [35]. In addition, people change their opinion on life-­ sustaining treatments over time, where often less-intensive treatments are preferred when outcome estimates become more pessimistic [36]. 5.7.2 

Family Conferences: The VALUE Approach

Discussing end-of-life issues can be challenging. The Society of Critical Care Medicine family-centered guidelines recommend that “routine interdisciplinary family conferences be used in the ICU to improve family satisfaction with communication and trust in clinicians and to reduce conflict between clinicians and family members” [37]. Using a structured approach to communication, such as the “VALUE” mnemonic, will help enhance clinician-family communication [38]. This pro-active communication strategy encourages clinicians to prepare the meeting beforehand, as interdisciplinary and interprofessional involvement in family conferences is impor-

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tant and all clinicians have a role to play. During the conference itself, clinicians are encouraged to: 55 Value family statements 55 Acknowledge family emotions 55 Listen to the family 55 Understand the patient as a person 55 Elicit family questions

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This strategy includes active listening, expressions of empathy, and making supportive statements around non-abandonment and decision-making [39]. This mnemonic was used as part of an intervention to improve clinician-family communication in the ICU and, combined with a bereavement brochure, has been shown to significantly decrease family symptoms of anxiety, depression, and posttraumatic stress 3 months after the patient’s death [40]. As communication is both complex and fundamental, the family-centered guidelines [41] also recommend that “ICU clinicians receive family-centered communication training as one element of critical care training to improve clinician self-efficacy and family satisfaction.” 5.7.3 

Support for the Family

The primary aim for facilitating a shared decision approach should be developing trust and team collaboration [34]. When all invested parties—including, but not ­limited to physicians, nurses, social workers, and psychologists—are involved in SDM, the burden of decision outcomes is dispersed among those collaborating and does not fall on one person. Better collaboration between members of the ICU team encourages the development of collective competence and enhances job satisfaction, logically producing improved care and subsequently improving patient and family outcomes. Family/patient-orientated facilitating techniques include developing confidence and trust (e.g., through patient activation), rapport with providers, and a trusting and positive patient–provider relationship. Language concordance between the provider and patient is also imperative. Different professionals could intervene as facilitators, such as chaplains [41], social workers, nurses, and physicians—if they are familiar with the ICU environment and have benefited from advanced training in communication. In fact, the intervention of an ICU communication facilitator or trained nurses can help to specifically reduce family distress and adapt end-of-life care. Facilitators’ roles are to support communication between clinicians and families, to adapt communication to family needs, and to mediate conflict. In an American study [42], families who benefited from the intervention of a facilitator experienced decreased symptoms of depression at 6 months, while families not exposed to facilitator expertise had increased level of depression. Symptoms of posttraumatic stress disorder were also lower in the intervention group at 6 months. For decedents, the intervention was associated with reduced length of stay in the ICU and hospital. Facilitators may be a valuable resource and can help clinicians address issues that might be overlooked or unaddressed in the busy hospital setting. However, this requires a budget

53 Shared Decision-Making (II): With Patients and Families

that may not be feasible in all hospitals. In another American study [43], a family-­ support pathway was instituted, in which trained nurses met with families in the intervention group on a daily basis—addressing emotional support and communication needs—and arranged clinician-family meetings within 48 h after enrollment and every 5–7 days thereafter. The study showed that this family-support intervention did not significantly affect the surrogates' psychological distress; however, the surrogates’ ratings of the quality of communication and the patient- and family-centeredness of care were better and the length of stay in the ICU was shorter with the intervention than with usual care. Last, a recent study from France showed that a three-step support strategy for families throughout the dying process (a family conference to prepare the relatives for the imminent death, an ICU-room visit to provide active support, and a meeting after the patient’s death to offer condolences and closure), following a decision to withdraw or withhold life support was associated with a reduced risk of developing prolonged grief symptoms at 12 months as well as PTSD related symptoms, anxiety, and depression [44]. 5.7.4 

Dealing with Discordance and Conflict

Discussing uncertainty about prognosis can be challenging for clinicians, although it is a central part of their work. Disagreement, and moreover conflict, between physicians and families over end-of-life decisions can lead to significant stress for everyone involved and can considerably hinder SDM. Research reveals that such conflicts are prevalent in the ICU.  In a multicenter international study [45], 27% of clinicians reported at least one conflict between themselves and families in the preceding week. Conflict is harmful in that it is associated with adverse outcomes both in clinicians (burnout) and families (anxiety, mistrust). However, when correctly identified and managed, conflict can have positive effects, such as helping families move forward through a distressing experience [46]. Discordance about prognosis can be problematic in the context of SDM and it is important to understand its causes. In a multicenter American study [47], physician-­ family discordance about prognosis occurred in over 50% of situations. Interestingly, discordance was related to misunderstandings by families about physicians’ assessments of patients’ prognoses and differences in beliefs about patients’ prognoses. It is thus important that physicians regularly check with families about their perceptions of prognosis before engaging in SDM. Providing adapted emotional support (aimed to alleviate guilt, for example) and discussing religious or spiritual beliefs are strategies that have shown to be beneficial [44]. 5.7.5 

Mediation

Mediation is the process by which someone tries to end a disagreement by helping the two sides talk. It is a new area for clinical disputes, although has widespread use in other areas of conflict resolution. In the United Kingdom, the National Health Service Resolution (website resolution.nhs.uk) uses mediation to resolve clinical negligence claims. The results include non-financial remedies, which otherwise would not have been available to the claimant. In the recent case of Charlie Gard—a con-

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troversial case about an infant boy born with mitochondrial DNA depletion syndrome for whom the medical team and the parents disagreed about whether experimental treatment was in the best interests of the child [48]—the judge stressed repeatedly how he considered that the parties should have tried mediation first. A thematic review of the implementation, nature, and operation of workplace mediation shows that 90% of participants found the process of mediation helpful, even if the dispute was not settled [49]. Overall, mediation has been found to be cheaper, faster and with a high chance of success (60–90%): it allows for the preservation of relationships, rather than the destructiveness of litigation.

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Take Home Messages 55 Shared decision-making is a complex process that necessitates constant adaptation to the patients’ as well as to the family members’ needs and preferences. 55 High quality communication is a prerequisite to SDM, focused on the patient’s and family’s understanding of the medical situation, evaluation of the family’s preferred role for decision-making, and adequate emotional support. 55 To guide the process of decision-making on continuing or limiting life-sustaining treatments in the ICU, a decision-making framework can be used that relies both on standardizing and individualizing.

Summary Throughout this chapter, it has been shown that SDM is a complex personalized process that necessitates constant adaptation to the patients’ as well as to the family members’ needs and preferences. High quality communication is a prerequisite to SDM, focused on the patient’s and family’s understanding of the medical situation, extracting ­information on patient preferences, evaluation, and re-evaluation of the family’s preferred role for decision-making and, last but not least, adequate emotional support. Some families may choose to formally be part of decision-making, thus taking on decisional responsibility, whereas others may choose to remain at a distance of medical decisions. Communication strategies have been tested, and recommendations have been published that are valuable tools for clinicians. However, one size does not fit all, and within every individual clinical circumstance, clinicians must strive to develop an approach to SDM that is adapted to each specific patient and each specific family. Last, one must remember that actively listening to the patient and the family is, without doubt, the first step to SDM.

References 1. White DB, Braddock CH, Bereknyei S, et al. Toward shared decision making at the end of life in intensive care units: opportunities for improvement. Arch Intern Med. 2007;167:461–7. 2. Kon AA, Davidson JE, Morrison W, et al. Shared decision making in ICUs: an American College of Critical Care Medicine and American Thoracic Society Policy Statement. Crit Care Med. 2016;44:188–201. 3. Azoulay E, Chaize M, Kentish-Barnes N. Involvement of ICU families in decisions: fine-tuning the partnership. Ann Intensive Care. 2014;4:1–10.

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4. Sahgal S, Yande A, Thompson BB, et al. Surrogate satisfaction with decision making after intracerebral hemorrhage. Neurocrit Care. 2021;34:193–200. 5. Xyrichis A, Fletcher S, Philippou J, et al. Interventions to promote family member involvement in adult critical care settings: a systematic review. BMJ Open. 2021;11:e042556. 6. Hess EP, Grudzen CR, Thomson R, et al. Shared decision-making in the emergency department: respecting patient autonomy when seconds count. Acad Emerg Med. 2015;22:856–64. 7. Schoenfeld EM, Goff SL, Elia TR, et al. Physician-identified barriers to and facilitators of shared decision-making in the emergency department: an exploratory analysis. Emerg Med J. 2019;36:346– 54. 8. Wubben N, van den Boogaard M, van der Hoeven JG, et al. Shared decision-making in the ICU from the perspective of physicians, nurses and patients: a qualitative interview study. BMJ Open. 2021;11:e050134. 9. McAdam JL, Arai S, Puntillo KA. Unrecognized contributions of families in the intensive care unit. Intensive Care Med. 2008;34:1097–101. 10. Johnson SK, Bautista CA, Hong SY, et al. An empirical study of surrogates’ preferred level of control over value-laden life support decisions in intensive care units. Am J Respir Crit Care Med. 2011;183:915–21. 11. Azoulay E, Pochard F, Chevret S, et al. Half the family members of intensive care unit patients do not want to share in the decision-making process: a study in 78 French intensive care units. Crit Care Med. 2004;32:1832–8. 12. El Jawiche R, Hallit S, Tarabey L, et al. Withholding and withdrawal of life-sustaining treatments in intensive care units in Lebanon: a cross-sectional survey of intensivists and interviews of professional societies, legal and religious leaders. BMC Med Ethics. 2020;21:1–11. 13. Curtis JR, Vincent JL.  Ethics and end-of-life care for adults in the intensive care unit. Lancet. 2010;376:1347–53. 14. Tilden VP, Tolle SW, Garland MJ, et al. Decisions about life-sustaining treatment. Impact of physicians' behaviors on the family. Arch Intern Med. 1995;155:633–8. 15. Heyland DK, Rocker GM, Dodek PM, et al. Family satisfaction with care in the intensive care unit: results of a multiple center study. Crit Care Med. 2002;30:1413–8. 16. Azoulay E, Pochard F, Kentish-Barnes N, et al. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med. 2005;171:987–94. 17. Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154:336–46. 18. Heyland DK, Davidson J, Skrobik Y, et al. Improving partnerships with family members of ICU patients: study protocol for a randomized controlled trial. Trials. 2018;19:3. 19. Pochard F, Darmon M, Fassier T, et al. Symptoms of anxiety and depression in family members of intensive care unit patients before discharge or death. A prospective multicenter study. J Crit Care. 2005;20:90–6. 20. Azoulay E, Pochard F, Chevret S, et al. Family participation in care to the critically ill: opinions of families and staff. Intensive Care Med. 2003;29:1498–504. 21. Azoulay E, Chevret S, Leleu G, et al. Half the families of intensive care unit patients experience inadequate communication with physicians. Crit Care Med. 2000;28:3044–9. 22. Ho A. Relational autonomy or under pressure? Family’s role in medical decision-making. Scand J Caring Sci. 2008;22:128–35. 23. Schenker Y, Crowley-Matoka M, Dohan D, et al. I don’t want to be the one saying ‘we should just let him die’: intrapersonal tensions experienced by surrogate decision makers in the ICU. J Gen Intern Med. 2012;27:1657–65. 24. Majesko A, Hong SY, Weissfeld L, et al. Identifying family members who may struggle in the role of surrogate decision maker. Crit Care Med. 2012;40:2281–6. 25. Kerckhoffs MC, Senekal J, van Dijk D, et  al. Framework to support the process of decision-­ making on life-sustaining treatments in the ICU: results of a Delphi study. Crit Care Med. 2020;48:645–53. 26. Kerckhoffs MC, Kant M, van Delden JJM, et al. Selecting and evaluating decision-making strategies in the intensive care unit: a systematic review. J Crit Care. 2019;51:39–45. 27. Gayat E, Cariou A, Deye N, et al. Determinants of long-term outcome in ICU survivors: results from the FROG-ICU study. Crit Care. 2018;22:8.

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28. Muscedere J, Waters B, Varambally A, et al. The impact of frailty on intensive care unit outcomes: a systematic review and meta-analysis. Intensive Care Med. 2017;43:1105–22. 29. Szakmany T, Walters AM, Pugh R, et al. Risk factors for 1-year mortality and hospital utilization patterns in critical care survivors: a retrospective, observational, population-based data linkage study. Crit Care Med. 2019;47:15–22. 30. Kerckhoffs MC, Brinkman S, de Keizer N, et  al. The performance of acute versus antecedent patient characteristics for 1-year mortality prediction during intensive care unit admission: a national cohort study. Crit Care. 2020;24:330–9. 31. Scheunemann LP, Ernecoff NC, Buddadhumaruk P, et al. Clinician-family communication about patients’ values and preferences in intensive care units. JAMA Intern Med. 2019;179:676–84. 32. Douglas SL, Daly BJ, Lipson AR. Neglect of quality-of-life considerations in intensive care unit family meetings for long-stay intensive care unit patients. Crit Care Med. 2012;40:461–7. 33. Hartog CS, Peschel I, Schwarzkopf D, et al. Are written advance directives helpful to guide end-­ of-­life therapy in the intensive care unit? A retrospective matched-cohort study. J Crit Care. 2014;29:128–33. 34. Michalsen A, Long AC, Ganz FD, et al. Interprofessional shared decision-making in the ICU: a systematic review and recommendations from an expert panel. Crit Care Med. 2019;47:1258–66. 35. Fried TR, Zenoni M, Iannone L, et al. Assessment of surrogates’ knowledge of patients’ treatment goals and confidence in their ability to make surrogate treatment decisions. JAMA Intern Med. 2019;179:267–8. 36. Houben CHM, Spruit MA, Schols JMGA, et al. Instability of willingness to accept life-sustaining treatments in patients with advanced chronic organ failure during 1 year. Chest. 2017;151:1081–7. 37. Davidson JE, Aslakson RA, Long AC, et al. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med. 2017;45:103–28. 38. Curtis JR, Patrick DL, Shannon SE, et al. The family conference as a focus to improve communication about end-of-life care in the intensive care unit: opportunities for improvement. Crit Care Med. 2001;29:N26–33. 39. Curtis JR, White DB.  Practical guidance for evidence-based ICU family conferences. Chest. 2008;134:835–43. 40. Lautrette A, Darmon M, Megarbane B, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med. 2007;356:469–78. 41. Wirpsa J, Johnson E, Bieler J, et al. Interprofessional models for shared decision making: the role of the health care chaplain. J Health Care Chaplain. 2019;25:20–44. 42. Curtis JR, Treece PD, Nielsen EL, et al. Randomized trial of communication facilitators to reduce family distress and intensity of end-of-life care. Am J Respir Crit Care Med. 2016;193:154–62. 43. White DB, Angus DC, Shields AM, et al. A randomized trial of a family-support intervention in intensive care units. N Engl J Med. 2018;378:2365–75. 44. Kentish-Barnes N, Chevret S, Valade S, et al. A three-step support strategy for relatives of patients dying in the intensive care unit: a cluster randomised trial. Lancet. 2022;399:656–64. 45. Azoulay E, Timsit JF, Sprung CL, et al. Prevalence and factors of intensive care unit conflicts: the Conflicus study. Am J Respir Crit Care Med. 2009;180:853–60. 46. Kayser JB, Kaplan LJ. Conflict management in the ICU. Crit Care Med. 2020;48:1349–57. 47. White DB, Ernecoff N, Buddadhumaruk P, et al. Prevalence of and factors related to discordance about prognosis between physicians and surrogate decision makers of critically ill patients. JAMA. 2016;315:2086–94. 48. Paris JJ, Ahluwalia J, Cummings BM, et  al. The Charlie Gard case: British and American approaches to court resolution of disputes over medical decisions. J Perinatol. 2017;37:1268–71. 49. Latreille P. Mediation: a thematic review of the Acas/CIPD evidence. 2011 (report paper available online at www.­acas.­org.­uk/researchpapers)

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The Significance of Cultural Diversity Victoria Metaxa, E. Wesley Ely, and Mervyn Mer Contents 6.1

Introduction – 58

6.2

Multiculturalism and Cultural Diversity – 59

6.3

Impact of Culture in Critical Care – 61

6.3.1 6.3.2 6.3.3

 eath and Dying – 61 D Communication – 63 Staff Well-being – 64

References – 66

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Michalsen et al. (eds.), Ethics in Intensive Care Medicine, Lessons from the ICU, https://doi.org/10.1007/978-3-031-29390-0_6

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nnLearning Objectives In this chapter, the reader will learn about the differences between the concepts of culture, race, and ethnicity, and consider the multiple factors that affect culture. The highly traumatic environment of critical care becomes even more stressful due to the diverse cultural background of patients, families, and healthcare professionals. The reader will familiarise themselves with the issues arising around communication, end-­ of-­life care, and staff well-being. A special mention to a different aspect of culture, organisational culture, and its impact on clinician distress will also be discussed. The importance of clinicians’ competencies in cross-cultural empathy is highlighted as means to improve the quality of care provided.

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6.1 

Introduction

The concepts of ‘culture’, ‘race’, and ‘ethnicity’ are frequently conflated and confused in both popular and academic discourse, where they are often used interchangeably as markers of distinctive social groups [1]. There are, however, important distinctions that have practical consequences in a globalised world, where people try to find ways to live together, in ever more diverse communities. Race is understood as ‘a group of persons related by common descent or heredity’; it refers to the classification of humans based on phenotype—observable physical differences—which are assumed to reflect inherent biological differences [2]. Although the impact of racism on healthcare disparities—in ICU and elsewhere [3]—has been consistently demonstrated for decades, the biological basis of race has been widely disputed [2, 4]. The terms ethnicity and ethnic group have instead been proposed in order to describe a group of people who share a common language, geographic location or place of origin, religion, sense of history, traditions, values, beliefs [4]. Culture is commonly defined as ‘[…] that complex whole, which includes knowledge, beliefs, arts, morals, laws, customs, and any other capabilities and habits acquired by [a human] as a member of society’ [5]. Furthermore, an understanding of culture must also include awareness of its relative permanence, as illustrated by this definition: ‘the integrated pattern of human knowledge, belief, and behaviour that depends upon the capacity for learning and transmitting knowledge to succeeding generations’ [6]. Culture is not necessarily bound to ethnicity, geography, or even to a specific group of people, but can be bound to shared circumstances, as in organisation and professions [7]. In fact, even though ethnic identity predicts cultural attitudes to some degree, the share of variation in culture that is explained by ethnicity is very small. This is probably explained by the fact that within-group variation in culture is greater than between-group variation [8]. In this context, culture can be defined as ‘a pattern of shared basic assumptions—invented, discovered, or developed by a group as it learns to cope with its problems of external adaptation and internal integration— that has worked well enough to be considered valid and therefore, to be taught to new members as the correct way to perceive, think and feel in relation to these problems’ [9]. This multifaceted aspect of culture will be used throughout the chapter, as the most influential factor for the values, norms, and attitudes of a group of people. It is of particular importance in the context of healthcare, where highly emotive topics,

59 The Significance of Cultural Diversity

such as death and dying, should be considered not only through the cultural viewpoints of the individuals involved but also through the culture of the healthcare setting (hospital—e.g. emergency room and ICU—permanent care facilities, or hospice). Another important concept is that of religion, which frequently spans across cultures and ethnicities. Especially around illness, death, and dying, faith has been shown to be central in patient and family efforts to provide guidance, make sense of the situation, grant permission around end-of-life decision-making, and cope better [10]. Although having a guide for diverse faiths and religious traditions around aspects of healthcare (breaking bad news, end-of-life care, grief) is important, religious beliefs like cultural beliefs may also differ between people of the same heritage.

6.2 

Multiculturalism and Cultural Diversity

Cross-border population flow, such as migration, has led to increased diversity within societies. This diversity results in the co-existence of differences in behaviour, traditions, and customs—in short, a diversity of cultures. UNESCO’s governing body, the General Conference, adopted the UNESCO Universal Declaration on Cultural Diversity in 2001, which recognises the concept of diversity as a factor in intellectual, emotional, and economic development, but also as an ethical imperative, inseparable from the respect for human rights [11]. Many parts of the world are no longer homogenous religious and cultural entities. Latinos represent nearly 13% of the US population, in Canada there are approximately 1,000,000 Chinese residents, whereas only 18% of the 1.1 billion Muslims live in the Arab countries [12]. Most modern societies comprise members with diverse cultural viewpoints, practices, and contributions. The concept of multiculturalism is both a response to the fact of cultural pluralism in modern democracies and a way of compensating cultural groups for past exclusion, discrimination, and oppression. Many minority cultural groups have experienced exclusion or the denigration of their contributions and identities in the past. Multiculturalism seeks the inclusion of the views and contributions of diverse members of society, while maintaining respect for their differences and withholding the demand for their assimilation into the dominant culture [13]. Nonetheless, multiculturalism raises important questions around which cultures will be recognised and to what degree. It is irrefutable that culture and ethnicity, particularly those of minority groups, deserve special acknowledgement of their differences within a dominant political culture. However, in the multicultural societies of today, people value different things, believe in different authorities, follow different customs, but most importantly differ on what things they count as right or wrong, permissible or impermissible. How then can one believe that their own view is superior to another? How can we judge the ways of others and assume that we hold the only right answer? Is there is a universally binding, common morality upon which all right-thinking people would agree? There are two predominant ethical theories that attempt to answer these questions: moral (cultural) relativism and moral objectivism [14]. Moral relativists believe that there is no absolute right answer to moral questions because morality is relative to culture or society; the moral values that people hold,

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depend on the culture in which they live or were raised. There are two kinds of moral relativism that are distinguished in literature: descriptive moral relativism and metaethical moral relativism [15]. The former is a view about the actual variation of moral aspects across societies and cultures, and it holds that there is widespread divergence in moral values and judgements between the people of the world, both currently and across time. An example would the practice of Ancient Greek Spartans to leave weak or sick children to die, a practice that is inconceivable by today’s Western moral standards. The metaethical relativist holds that there is no absolute moral truth; there are only views about right and wrong. Even our obligation to be tolerant of the views, ways, and customs of others (a fundamental feature of relativism) cannot always be upheld, as it leads to unavoidable contradiction: the absence of any absolute moral claim. This absence of any moral absolute is the main criticism against relativism; to say that whether rape is wrong is a matter of opinion, is a rather extreme view [15]. On the opposite side of relativism lies moral objectivism which holds that not only are there universal moral truths but also that these truths give us the appropriate authority to judge accordingly. Beauchamp and Childress claim that their four key principles (autonomy, beneficence, non-maleficence, distributive justice) represent a ‘set of universal norms shared by all persons committed to morality’ [16]. This approach claims that this ‘common morality’ binds all rational persons, irrespective of any cultural diversity, and that no contradictory norm can be justified. Several criticisms against objectivism include the fact that medical ethics have been developed in the West, so their focus is on individual rights, while the concepts of community, tradition, and relationships receive less weight [17]. When considering cultural diversity, the African term ‘Ubuntu’ has recently gained recognition. Defined by the African Journal of Social Work, ubuntu is ‘a collection of values and practices that people of Africa or of African origin view as making people authentic human beings’. While the nuances of these values and practices vary across different ethnic groups, they all point to one thing—an authentic individual human being is part of a larger and more significant relational, communal, societal, environmental, and spiritual world [18]. The late Archbishop Desmond Tutu explained the concept as follows: ‘One of the sayings in our country is ubuntu - the essence of being human. Ubuntu speaks particularly about the fact that you can’t exist as a human being in isolation. It speaks about our interconnectedness. You can’t be human all by yourself, and when you have this quality— ubuntu—you are known for your generosity. We think of ourselves far too frequently as just individuals, separated from one another, whereas you are connected and what you do affects the whole world. When you do well, it spreads out; it is for the whole of humanity’ [19]. Based on the above, it can be argued that ubuntu is a type of moral relativism, which draws on absolute human virtues: compassion and humanity. Nelson Mandela suggested that the virtues encompassed by ubuntu are the important things in life and that the concept adds globally to our common search for a better world [18].

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6.3 

Impact of Culture in Critical Care

The purpose of intensive care units (ICUs) is to provide specialist care to patients with life-threatening injury or disease. However, as many as 40% of ICU patients will not survive their critical care admission [20], with more than 70% of deaths being preceded by some form of limitation of life-sustaining treatment [21]. Research has shown that patients and physicians with different religious, cultural, and ethical backgrounds adopt different approaches, even within the same religion [21, 22]. Diverse perspectives, particularly around emotional topics, such as death and dying, demand good communication and understanding between the involved parties, namely clinicians, patients, and caregivers. ICU clinicians are often ill-prepared to provide supportive care to dying patients and their families, especially when families are unable to clearly communicate their wishes because of cultural or language barriers [16]. The impact of cultural diversity on everyday ICU practices, especially management around the end of a patient’s life, communication, and staff well-being will be further explored in the following sections. 6.3.1 

Death and Dying

The diversification of modern society is clearly demonstrated in the varying attitudes towards death and dying. Dominated by religion in the past and by medicine in the present, the idea of what constitutes a ‘good death’ has changed in different cultures and societies throughout history. Advances in medical science and the subsequent technological advances have provided treatment for many previously incurable causes of death. The terminal event became something preventable and gradually its occurrence begun to be viewed as failure. This ‘modern’ idea of a good death is often seen as one that 55 hasn’t happened yet (as the event is projected to an indeterminate, future point in time) 55 is not seen to happen (as it occurs in hospitals and hospices, behind curtains and in side-rooms, away from the wider community) 55 happens without one noticing (quietly in one’s sleep for example) [23] Acceptance of the inevitable end is also a pertinent feature of the modern idea of ‘good death’; both patients and their families are requested to comply to the diagnosis of impending death and welcome the management options offered by the clinicians. Denial of the foreseen event precludes the chance to prepare for it, diminishes one’s choices and deprives the opportunity to exercise one’s autonomy—all characteristics of a ‘bad death’ [23–25]. Cultural diversity is even more pronounced when exploring the idea of ‘good death’ from a non-Western perspective. At the turn of the century, the Debate of the Age, Health and Care Study Group in Britain published 12 principles of a good death, titled ‘The Future of Health and Care of Older People’ (TFHCOP), which reflected the Western perception of a good death [26]. When the applicability of those 12 principles was tested in Muslim patients and their health care providers,

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only eight of them were endorsed (marked with an x; 7 Box 6.1). Other aspects that generally had to do with control over the dying process, such as knowledge of the timing of the death and choice over the place of death, were not as important for Muslim patients and health care providers as they appear to be for their Western counterparts.  

Box 6.1 Twelve Principles of a Good Death (Modified From [26])

6

55 55 55 55 55 55 55 55 55 55 55 55

To know when death is coming and understand what to expect To be able to have control over what happens X To be afforded dignity and privacy X To have control over pain and other distressing symptoms X To have control (choice) over the place of death (at home or elsewhere) To have access to information and expertise To have access to spiritual and/or emotional support X To have access to hospice care (in hospital or elsewhere) X To have control over who is present at the time of death To have the time to write advance directives, which ensure wishes are respected X To have time to say goodbye X To be able to leave when it is time to go, not to have life prolonged pointlessly X

Furthermore, participants identified certain aspects of quality of death that were not mentioned in the Western literature and could be classified into three domains: 55 Faith, belief, and preferences during the dying process (being prompted with Shahadah, a final statement of death; having someone recite chapters of the Quran; dying facing the holy mosque in Makkah; dying at a holy time) 55 Self-esteem and body image (avoiding post-mortem disfigurement; making sure the body has a normal appearance after death; ensuring that the burial takes place as soon as possible) 55 Concerns about family security (ensuring that the remaining family has no economic or social concerns) [27, 28] Cultural differences among dying patients have been observed by critical care clinicians for years, and one of the first articles highlighting its impact on caring for dying patients was published almost three decades ago [28]. The authors recognised the importance of cultural variation in end-of-life care but also the risk for serious moral disputes and overt conflict due to the same. Almost two decades later, a landmark study by Bülow and colleagues demonstrated the effect of patient religion on the limitation of life-sustaining treatment in critical care (. Table 6.1) [12]. The influence of patient religion and ethnicity continued to be a focus in ICU research, and its impact on end-of-life decision-making has been clearly described: non-white patients are less likely to have a Do-Not-Attempt-Cardio-Pulmonary-­­ Resuscitation (DNACPR) order than white patients, even after adjusting for possible confounding factors [29]. Clinicians in North America and northern European coun 

63 The Significance of Cultural Diversity

.       Table 6.1  Major religions’ views on end-of-life decisions (modified from [13]) Withhold LST

Withdraw LST

Withdraw artificial nutrition

Organ donation

Euthanasia

Catholics

Yes

Yes

No

Yes

No

Protestants

Yes

Yes

Yes

Yes

Some

Greek Orthodox

No

No

No

Yes

No

Muslims

Yes

Yes

No

Most

No No

Orthodox Jews

Yes

No

No

Yesa

Buddhists

Yes

Yes

Yes

Noa

No

Hindus & Sikhs

Yes

Yes

?

Yes

Some

LST life-sustaining treatment a There are conflicting views within the religion

tries may be more likely to support DNACPR decisions and limitation of life-­ sustaining treatment than their colleagues in southern Europe and the Middle East. There appears to be a gradient of less aggressive to more aggressive end-of-life care practices from northern to southern Europe and in Great Britain, as compared to the United States [30, 31]. A recent large, prospective, international observational study in 730 ICUs in 84 countries investigating the worldwide burden of critical illness, surveyed more regions and explored the characteristics of patients in whom a decision to withholding/withdrawing life-sustaining therapy was made [31]. This study also reported remarkable worldwide practice variations with regional, religious, and socio-economic factors being suggested as possible causes for the observed variability [21, 29, 32]. 6.3.2 

Communication

Although some racial and ethnic differences in end-of-life care may be attributed to patients’ informed preferences and decision-making, some differences do not reflect patient values and goals, but instead may be the product of poor-quality communication about goals of care [33]. Differences that result from informed decision-making should be respected, but differences in end-of-life care that result from inadequate communication must be addressed and corrected. For example, compared to whites, family members of African American decedents are more likely to cite absent or problematic communication with physicians about end-of-life care [34] and African American patients report less satisfaction with quality of care received at the end of life [35].

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Specifically in critical care, the influence of ethnic, cultural, and religious backgrounds of patients and families was identified in a systematic review that looked at culturally sensitive communication near the end of patients’ lives in ICUs [36]. Patients’ and families’ backgrounds, including distinctive cultures, religions, or languages, impacted on their ability to engage in communication with clinicians at the end of life. An example would be Muslim faith, where often there is belief that a cure exists for everything and that only God knows where and when a person will die. This can potentially lead to confusion and conflict when communicating with clinicians about end-of-life matters, a fact that has been highlighted in the relevant literature [37]. The cultural diversity of families may also contribute to unrealistic expectations related to end-of-life care. Families’ expectations in terms of prognosis or treatment can at times be overly optimistic, due to cultural or religious reasons, which may result in conflict between clinicians and families, and issues related to exchange of medical information [38]. The death and dying process in ICU is influenced not only by the patients’ diverse cultural identity but also by clinicians’ personal and socio-cultural factors [39]. This diversity of the healthcare providers’ professional culture can sometimes create friction between clinicians and patients and their families, but also between medical and nursing staff. As previously demonstrated in patients, cultural geography impacts on professional relationships with 96% of physicians in northern Europe reporting that they discuss end-of-life decisions with nurses, as opposed 70% in central and 61% in southern Europe, respectively [40]. Similar distribution was reported in the agreement between nurses and doctors once a decision around death and dying was made; concordance was found in 98% of the cases in northern Europe, 80% in central but only 63% in southern Europe [41]. Physicians’ approach to end of life also depended on their religion, with more discussions occurring if the doctor was of protestant, catholic, or Jewish religion, or had no religious affiliation, compared with those of Greek Orthodox or Muslim beliefs. More specifically, clinicians of a Muslim faith identified an obligation to do everything possible to save a patient’s life and to avoid committing a sin, potentially avoiding conversations with families around prognosis and end-of-life care [21, 36]. Another explanation for this reported avoidance may be that religious intensivists are more likely to perceive conflict during a family meeting, even when the intensivist identified as having the same religion as the family surrogate [41]. 6.3.3 

Staff Well-being

Working in a culturally diverse team and with patients of different cultural backgrounds can be challenging due to differences in opinions, beliefs, thoughts, norms, customs, and traditions [42], which can lead to disagreement and conflict. Studies have demonstrated an association between cultural diversity and workplace stressors, especially for the nursing staff, who perceived caring for culturally diverse patients as a stressor due to linguistic, cultural, and ethnic differences [43]. These stressors focused on four main categories: impact on work patterns, communica-

65 The Significance of Cultural Diversity

tion challenges, responses to crises, and professional status and gender issues [43]. Linguistic difficulties were viewed as both frustrating and unpredictable, as were the responses to pain and grief that the relatives of culturally diverse patients exhibited. The need of multiple family members to simultaneously be at the patient’s bedside and apparent disregard of the formal visiting hours were also highlighted as stressors [44]. It has been suggested that native and foreign-born health care professionals need to be equipped with cross-cultural competence in order to effectively manage cultural differences in the workplace. Cross-cultural competence has been defined as a set of skills (e.g. patience and cultural adaptability), attitudes (e.g. tolerance and respect towards other cultures), motivations (e.g. cultural curiosity), emotions (e.g. multicultural empathy and sensitivity), and knowledge (e.g. awareness of one’s own values and perceptions) that enable health care providers to overcome discrimination, isolation, and difficulties in interactions with patients and colleagues [45, 46]. Studies have suggested that cross-cultural empathy may also protect against perceived time-­ pressure at work, distress, and sleep problems among both native and foreign-born nurses who face cultural diversity in health care settings [42]. When viewing culture as the shared circumstances of a specific group forming a ‘work climate’, a different aspect of cultural diversity arises. The organisational culture contributes to individual clinician behaviours and the quality of patient care. As ICUs are relatively closed units with many of the same staff members working near one another, each unit can easily develop its own culture [46]. ICUs without a safe climate, in which clinicians aren’t empowered to speak up or feel that their opinion is valued, create a culture of mistrust and a lack of cohesion that reflects in the decision-­making process. Working in an environment that lacks respect, healthcare professionals may feel unable to express concerns around patient care, especially around end-of-life decisions. This poor ICU climate coupled with unrealistic expectations from patients and their families, frequently due to diverse cultural backgrounds, often leads to prolongation of life-sustaining treatment, postponed decision-making, and perceived inappropriateness around end-of-life care [47, 48]. Whereas acute moral distress related to decision-paralysis may induce overt conflicts in the team, more chronic forms of unexpressed moral distress, such as frustration, guilt, or maladaptive behaviour, can ultimately cause increased job turnover [47–49]. The challenge for health care professionals is to find ways to adapt their medical practice and ethical models in order to meet the needs of patients and families from different backgrounds. Even when clinicians abide by the concept of moral relativism, being confronted with perceived unrealistic expectations or care demands which clash with their own belief system is testing. The importance of acknowledging and respecting differing cultural and religious values, being willing to reassess and question one’s own practice and accepting that no one holds the universal truth is crucial to providing equitable care to patients and families. An integral part of ubuntu philosophy, the fact that no human being can exist in isolation, may enable clinicians to view such conflicts in a less confrontational manner, promoting truly patient-centred care and relieving moral distress.

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Take-Home Messages 55 Although the biological concept of ‘race’ has been widely disputed, the impact of racism on healthcare is very real. 55 The concepts of ‘culture’ and ‘ethnicity’ are frequently conflated. 55 Culture is influenced by but not necessarily bound to ethnicity, geography, religion, or even to a specific group of people, but bound to shared circumstances. 55 The world and subsequently our workplace are no longer a homogenous cultural entity. 55 Caring for culturally diverse patients and their families poses certain challenges. 55 These challenges are mainly around communication and end-of-life care. 55 Cross-cultural empathy, acceptance, and respect will improve patient and family experience but also reduce healthcare distress and burnout.

6 Summary Cultural diversity is a common characteristic of many societies and is more evident when issues related to death and dying are concerned. Although some beliefs appear to be universal (e.g. not dying in pain and being close to people one loves), others (e.g. control over the timing and place of one’s death, full disclosure of the details around the dying process) are not welcomed by all cultures. In ICUs, the cultural diversity that exists both among patients and between clinicians influences communication and end-of-life decision-­making, and frequently leads to conflict. If the intention is to provide meaningful and equal care to patients, cultural diversity cannot be ignored. Therefore, awareness of cultural aspects requires knowledge of and sensitivity to different ethnic groups, as well as cultural competence on the parts of healthcare personnel. Many of these diverse elements can be overcome by learning from the spirit and philosophy of ubuntu as well as the appreciation of the importance of communication, together with dignity, respect, and simple decency.

References 1. Bell E. Ethnicity versus culture. In: Smith AD, Stone J, Dennis R, Rizova P, editors. The Wiley Blackwell Encyclopedia of race, ethnicity, and nationalism. Chichester: Wiley; 2015. 2. Braveman P, Dominguez TP.  Abandon “race.” Focus on racism. Front Public Health. 2021;9:689462. 3. McGowan SK, Sarigiannis KA, Fox SC, et al. Racial disparities in ICU outcomes: a systematic review. Crit Care Med. 2022;50:1–20. 4. Smedley A, Smedley BD.  Race as biology is fiction, racism as a social problem is real: anthropological and historical perspectives on the social construction of race. Am Psychol. 2005;60:16–26. 5. Tylor E. Macmillan Dictionary of anthropology. The Macmillan Press. 1986 6. Heyes C. Culture. Curr Biol. 2020;30:R1246–50. 7. Cable-Williams B, Wilson DM. Dying and death within the culture of long-term care facilities in Canada. Int J Older People Nurs. 2017;12:e12125. 8. Desmet K, Ortuño-Ortín I, Wacziarg R.  Culture, ethnicity, and diversity. Am Econ Rev. 2017;107:2479–513. 9. Schein E.  Coming to a new awareness of organizational culture. MIT Sloan Manage Rev. 1984;25:1–7. 10. Wiener L, McConnell DG, Latella L, et  al. Cultural and religious considerations in pediatric palliative care. Palliat Support Care. 2013;11:47–67.

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11. UNESCO Universal Declaration on Cultural Diversity, adopted by the 31st session of the general conference of UNESCO, Paris, 2 November 2001. 2002. https://unesdoc.­unesco.­org. 12. Bülow HH, Sprung CL, Reinhart K, et al. The world’s major religions’ points of view on end-of-­ life decisions in the intensive care unit. Intensive Care Med. 2008;34:423. 13. Henderson S, Horne M, Hills R, et  al. Cultural competence in healthcare in the community: a concept analysis. Health Soc Care Community. 2018;26:590–603. 14. Metaxa V, Ely EW. Cultural diversity. In: Michalsen A, Sadovnikoff N, editors. Compelling ethical challenges in critical care and emergency medicine. Berlin: Springer. 2020. p. 49–55 15. Sheehan M.  Moral relativism. In: Ashcroft R, Dawson A, Draper H, McMillan JR, editors. Principles of health care ethics, 2nd ed. Chichester: Wiley. 2007. p. 93–98. 16. Beauchamp TL, Childress JF. Principles of biomedical ethics. 8th ed. New York: Oxford University Press; 2019. 17. Foster C.  Choosing life, choosing death: the tyranny of autonomy in medical ethics and law. Oxford: Hart Publishing; 2009. 18. Mugumbate JR, Chereni A.  Now, the theory of Ubuntu has its space in social work. AJSW. 2020;10:v–xv. 19. Tutu D. Brief meaning of African word ‘UBUNTU’. In: Ubuntu Women Institute USA. 2012. 20. Wunsch H, Angus DC, Harrison DA, et al. Variation in critical care services across North America and Western Europe. Crit Care Med. 2008;36:2787–93. 21. Mark NM, Rayner SG, Lee NJ, et al. Global variability in withholding and withdrawal of life-­ sustaining treatment in the intensive care unit: a systematic review. Intensive Care Med. 2015;41:1572–85. 22. Sprung CL, Maia P, Bulow HH, et al. The importance of religious affiliation and culture on end-­ of-­life decisions in European intensive care units. Intensive Care Med. 2007;33:1732–9. 23. Walters G. Is there such a thing as a good death? Palliat Med. 2004;18:404–8. 24. Bratcher JR. How do critical care nurses define a “good death” in the intensive care unit? Crit Care Nurs Q. 2010;33:87–99. 25. Zimmermann C. Death denial: obstacle or instrument for palliative care? An analysis of clinical literature. Sociol Health Illn. 2007;29:297–314. 26. Debate of the Age Health and Care Study Group. The future of health and care of older people: the best is yet to come. London: Age Concern; 1999. 27. Flaskerud JH.  Non-Western perspectives of a good death. Issues Ment Health Nurs. 2017;38: 763–6. 28. Tayeb MA, Al-Zamel E, Fareed MM, et al. A “good death”: perspectives of Muslim patients and health care providers. Ann Saudi Med. 2010;30:215–21. 29. Frost DW, Cook DJ, Heyland DK, et al. Patient and healthcare professional factors influencing end-of-life decision-making during critical illness: a systematic review. Crit Care Med. 2011;39:1174–89. 30. Sprung CL, Ricou B, Hartog CS, et al. Changes in end-of-life practices in European intensive care units from 1999 to 2016. JAMA. 2019;322:1692–704. 31. Wong WT, Phua J, Joynt GM.  Worldwide end-of-life practice for patients in ICUs. Curr Opin Anaesthesiol. 2018;31:172–8. 32. Phua J, Joynt GM, Nishimura M, et al. Withholding and withdrawal of life-sustaining treatments in low-middle-income versus high-income Asian countries and regions. Intensive Care Med. 2016;42:1118–27. 33. Lee JJ, Long AC, Curtis JR, et al. The influence of race/ethnicity and education on family ratings of the quality of dying in the ICU. J Pain Symptom Manage. 2016;51:9–16. 34. Welch LC, Teno JM, Mor V. End-of-life care in black and white: race matters for medical care of dying patients and their families. J Am Geriatr Soc. 2005;53:1145–53. 35. Smith AK, Davis RB, Krakauer EL. Differences in the quality of the patient-physician relationship among terminally ill African-American and white patients: impact on advance care planning and treatment preferences. J Gen Intern Med. 2007;22:1579–82. 36. Brooks LA, Bloomer MJ, Manias E. Culturally sensitive communication at the end-of-life in the intensive care unit: a systematic review. Aust Crit Care. 2019;32:516–23. 37. Azoulay E, Timsit JF, Sprung CL, et al. Prevalence and factors of intensive care unit conflicts: the Conflicus study. Am J Respir Crit Care Med. 2009;180:853–60.

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38. Van Keer RL, Deschepper R, Francke AL, et al. Conflicts between healthcare professionals and families of a multi-ethnic patient population during critical care: an ethnographic study. Crit Care. 2015;19:441. 39. Long AC, Brumback LC, Curtis JR, et al. Agreement with consensus statements on end-of-life care: a description of variability at the level of the provider, hospital, and country. Crit Care Med. 2019;47:1396–401. 40. Benbenishty J, Ganz FD, Lippert A, et al. Nurse involvement in end-of-life decision making: the ETHICUS study. Intensive Care Med. 2006;32:129–32. 41. Moale A, Teply ML, Liu T, et al. Intensivists’ religiosity and perceived conflict during a simulated ICU family meeting. J Pain Symptom Manage. 2020;59:687–93. 42. Wesołowska K, Hietapakka L, Elovainio M, et  al. The association between cross-cultural competence and well-being among registered native and foreign-born nurses in Finland. PLoS One. 2018;13:e0208761. 43. Høye S, Severinsson E. Intensive care nurses’ encounters with multicultural families in Norway: an exploratory study. Intensive Crit Care Nurs. 2008;24:338–48. 44. Listerfelt S, Fridh I, Lindahl B.  Facing the unfamiliar: nurses’ transcultural care in intensive care—a focus group study. Intensive Crit Care Nurs. 2019;55:102752. 45. Bernhard G, Knibbe RA, von Wolff A, et  al. Development and psychometric evaluation of an instrument to assess cross-cultural competence of healthcare professionals (CCCHP). PLoS One. 2015;10:e0144049. 46. Beach MC, Topazian R, Chan KS, et al. Climate of respect evaluation in ICUs: development of an instrument (ICU-CORE). Crit Care Med. 2018;46:e502–7. 47. Piers RD, Azoulay E, Ricou B, et al. Perceptions of appropriateness of care among European and Israeli intensive care unit nurses and physicians. JAMA. 2011;306:2694–03. 48. Van den Bulcke B, Metaxa, V, Reyners AK, et al. DISPROPRICUS Study Group of the Ethics Section of the ESICM. Ethical climate and intention to leave among critical care clinicians: an observational study in 68 intensive care units across Europe and the United States. Intensive Care Med. 2020;46:46–56. 49. Van den Bulcke B, Piers R, Jensen HI, et al. Ethical decision-making climate in the ICU: theoretical framework and validation of a self-assessment tool. BMJ Qual Saf. 2018;27:781–9.

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Goal of Therapy and Extent of Treatment Contents Chapter 7 Life-Sustaining Therapies: Indication, Prognostication, and the Patient’s Wishes – 71 Monika C. Kerckhoffs, Jochen Dutzmann, Aimee B. Milliken, and Jozef Kesicoglu Chapter 8 Limiting Life-Sustaining Therapies – 81 Andrej Michalsen, Sabine Reimund, Jan Bakker, Charles L. Sprung, and Armand Girbes Chapter 9 Focus Topic: Decision-Making Regarding Resuscitation from Cardiac Arrest in the ICU – 95 Jochen Dutzmann, Gavin M. Joynt, Carole Boulanger, Jan Bakker, and Nicholas Sadovnikoff Chapter 10 Palliative Care in Intensive Care Units – 107 Ann L. Jennerich, Victoria Metaxa, Kateřina Rusinová, and Jozef Kesecioglu

III

71

Life-Sustaining Therapies: Indication, Prognostication, and the Patient’s Wishes Monika C. Kerckhoffs, Jochen Dutzmann, Aimee B. Milliken, and Jozef Kesecioglu Contents 7.1

Introduction – 72

7.2

Prognostication – 73

7.2.1

 rognostication of Morbidity and Mortality During ICU P Treatment – 73 Prognostication of Morbidity and Mortality After Discharge from the ICU – 74

7.2.2

7.3

Goal-Concordant Care – 74

7.4

Shared Decision-Making – 75

7.5

Appropriateness of Care – 76

7.5.1 7.5.2 7.5.3

 efore ICU Admission: Advance Care Planning – 76 B During ICU Admission – 76 Substituted Judgment – 77

References – 78

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Michalsen et al. (eds.), Ethics in Intensive Care Medicine, Lessons from the ICU, https://doi.org/10.1007/978-3-031-29390-0_7

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nnLearning Objectives 55 In this chapter, readers will recognize the challenge and necessity of adequate prognostication for the definition of the therapeutic goal. 55 Readers will become familiar with the of use advance care planning in ICU decision-­making. 55 Readers will learn how to use shared decision-making in order to provide goal-­ concordant care. 55 Readers will understand the role and pitfalls of surrogate decision-makers in substituted judgments on life-sustaining therapies in the ICU. 55 Readers will understand the concept of response shift in ICU survivors.

7.1 

7

Introduction

Each year, millions of patients are treated in intensive care units (ICUs) worldwide. These ICU patients are a heterogeneous group. They vary as to severity of illness, age, frailty, and comorbidities, and may be admitted unplanned or after elective procedures. Although most patients survive their critical illness, mortality during and after their stay in the ICU remains significant [1]. Besides the burden caused by the ICU treatment itself, more than one-third of ICU survivors suffer from the sequelae of critical illness. These comprised of impairments in physical, cognitive, and/or mental health, often referred to as the Post-Intensive Care Syndrome (PICS), and lead to increased hospital resource use and decreased quality of life [2–5]. Since ICU treatments can be burdensome and the outcome may be disappointing, benefits and harms should be assessed repeatedly [6]. Prognosis, proportionality, and patient preferences should be aligned in order to provide proportional and goal-­ concordant care. This means that life-sustaining treatments must have the potential to realize patient-specific goals concerning survival, functional outcomes, quality of life, and participation in society [7, 8]. In approximately 10% of all ICU patients, the decision to forgo life-sustaining treatments is made [9]. In the majority of patients who die in an ICU, a decision to withhold or withdraw life-sustaining therapy preceded death [9]. Decisions to limit life-sustaining treatments are usually made in patients for whom unlimited ICU treatment is not consented to or considered disproportionate. ICU physicians are repeatedly challenged to evaluate the fit between prognosis and patient preferences. This is ideally done within a process of careful and shared decision-making, in which clinicians and patients or their surrogate decision-makers make rational, evidence-based and individualized health care decisions [7]. For each individual ICU patient, the relevant information concerning prognosis, proportionality, and patient preferences must be integrated into a decision-making process in order to certify that the outcome that the patient considers acceptable is a realistic treatment goal. In the process of decision-making in the ICU, the patient is often unable to participate, leaving these value-laden decisions as to his/her wishes to surrogate decision-­ makers. ICU physicians must be aware that there are major pitfalls in substituted judgments (the decisions the patients would make if they were able to) and that prior stated preferences are not static.

73 Life-Sustaining Therapies: Indication, Prognostication, and the Patient’s...

7.2 

Prognostication

In critical ill patients, prognostication and acknowledgment of prognostic uncertainty serve as substantial prerequisites for the definition of the therapeutic goal, which in turn is essential for the communication with patients and/or their surrogates. Patients and surrogates are often under immense emotional pressure and ask for definite statements about the probability of survival, duration of treatment, as well as morbidity and quality of life after discharge from the ICU.  Even though many of them harbor some doubt about the accuracy of physicians' prognostications, they highly value discussions about prognosis and use the information for multiple purposes [10]. Accurate prognostication is thus of high clinical relevance and imminently influences ICU treatment: there is a considerable risk of overtreatment as a result of overly optimistic prognostication as well as a risk of undertreatment as a result of overly pessimistic prognostication [11]. The course of critical illness is usually highly individual and disparate among ICU patients. Disease severity may vary not only among individuals, but also during the clinical course of the same patient. In addition to the type, severity, and duration of critical illness, other factors, such as pre-existing conditions, multimorbidity, complications during ICU treatment, organ failure, age, and sex, may impact on prognosis. Even organizational and structural characteristics of hospitals can have considerable effects on prognosis, e.g., availability of certain treatment options as well as composition, expertise, and experience of therapeutic teams [12]. This includes characteristics of prehospital and emergency medical services and even rurality or urbanity of the region, where people live, fall ill, and are treated. 7.2.1 

 rognostication of Morbidity and Mortality During ICU P Treatment

Scoring systems have been developed and improved through the last decades to objectify disease severity, probability of survival, development of organ failure, and prognosis in certain diseases. The acute physiology and chronic health evaluation score (APACHE), the simplified acute physiology score (SAPS), and the sequential organ failure assessment score (SOFA) are probably the most widely used prognostic models in intensive care medicine. Each model assumes that mortality will be influenced by extreme physiologic derangement that occurs early in the course of illness and before optimal resuscitation [13, 14]. Scores can furthermore be used for quality control and economic evaluation in the ICU.  However, all scores share several methodic limitations: the patient cohorts used to develop these models may not be relevant to the individual patient and consequently, scores may not be suitable for prognostication in the individual patient. Moreover, the prognosis of individual patients may change during the course of disease and ICU treatment, e.g., through the occurrence of complications. Prognosis—and subsequently the defined therapeutic goal—must be reevaluated regularly over time. Additionally, scores may have been developed several years before and may no longer reflect current practice patterns and treatment. These models may become obsolete over time [13]. Scoring systems may therefore not be misused to “calculate” individual courses of disease. They can still be one element of prognostication in the assessment of the patient’s current situation, next to others.

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7.2.2 

7

 rognostication of Morbidity and Mortality After Discharge P from the ICU

Accurate prognostication comprises not only appropriate statements about the probability of survival of ICU treatment, but also about the quality of survival, health restoration, and the quality of life after ICU treatment. Until recently, most scores and clinical trials considered 28 day- or 90 day-survival as the primary criterion of outcome. About a decade ago, however, long-term sequelae of critical illness became a focus of scientific interest. Wunsch and colleagues reported a high mortality among ICU survivors within 6 months after discharge and among those who required mechanical ventilation [15]. Herridge and colleagues investigated functional 5-year outcomes among survivors of the acute respiratory distress syndrome and found exercise limitation and decreased physical quality of life [4]. In addition to disease- and organ-specific sequelae, cognitive and mental consequences (e.g., depression, post-traumatic stress disorder) as well as general physical sequelae (e.g., critical illness polyneuropathy (CIP) and critical illness myopathy (CIM)) loom large [16–18]. As a result of the combination of acute illness severity and resultant morbidity, frequently called post-intensive care syndrome (PICS), ICU survivors have been shown to have a persistently lower quality of life than general population levels in a systematic review of 21 independent studies [19]. Predictors for lower quality of life have been older age, severity of illness, and length of ICU treatment. Fernando and colleagues reported even an increased risk of suicide and self-­harm, which was markedly associated with invasive mechanical ventilation and renal replacement therapy as well as with pre-existing psychiatric illness [20]. PICS remarkably comprises not only morbidity and impairment of ICU survivors, but also of their caregivers, typically family and close friends. The development of adverse psychological outcomes such as anxiety, acute stress disorder, post-­ traumatic stress, depression, and complicated grief is usually entitled post-intensive care syndrome-family (PICS-F) [21, 22]. Even though prognostication of critical illness comprises PICS-F, PICS-F may not be taken into consideration for the decision about treatment limitations by surrogate decision-makers.

7.3 

Goal-Concordant Care

Goal-concordant care is defined as care that “helps reach a patient-identified goal and respects any treatment limitations the patient has placed on clinical care” and has been increasingly identified as a key outcome of interventions aimed at improving communication between patients and clinicians [8]. Multiple organizations internationally have emphasized the importance of excellent patient-clinician communication as critical to achieving high-quality care, like Canada’s “Choosing Wisely” campaign [23, 24]. In fact, some authors have argued that failure to achieve goal-concordant care is a serious medical error that can result in harm [7]. For patients who are experiencing serious illness and/or are approaching the end of their lives, achieving goal-concordant care is an especially important treatment goal.

75 Life-Sustaining Therapies: Indication, Prognostication, and the Patient’s...

Goal-concordant care requires the establishment of individualized patient goals; these may be distinct from purely medical goals [8]. For example, patient goals may include attending a child’s wedding or graduation, maximizing time spent at home, or accomplishing an important personal goal. It is within the purview of the patient and/or family to establish these goals. The role of the clinical team is to cultivate prognostic awareness of the patient or their surrogate also in this respect. This requires the provision of sufficient information about diagnosis and prognosis, the impact of the disease process and treatments [8]. It is also important that clinicians acknowledge prognostic uncertainty. Through adequate communication and shared decision-making (see 7 Chap. 5) patient-centered goals can be identified, and appropriate limitations of (life-sustaining) therapies can be established.  

7.4 

Shared Decision-Making

There is some evidence that robust advance care planning can facilitate the receipt of goal-concordant care at the end of a patient’s life, including the avoidance of unwanted life-­sustaining treatment, particularly in vulnerable populations such as communities of color [25]. Conversely, decision-making in the moment can be fraught and may be subject to snap judgments by patients or their surrogates that are not truly reflective of well-considered goals, sometimes resulting in unwanted interventions. As such, developing a robust sense of goals and values ahead of clinical emergencies is often preferable. Despite the role goal-concordant care plays in sound end-of-life care and an increased research interest in the concept, there remains a paucity of validated methods for measuring goal-concordance [7, 8, 26]. Turnbull and Hartog recommend estimating the incidence of goal-discordant care by collecting data on the following variables: (1) the patient’s goals; (2) treatment limitations, if any; (3) treatments received; and (4) judgments regarding whether each treatment was concordant with the patient’s goals and limitations on treatment [8]. However, these data may be difficult to collect and/or must be retrospectively elicited from a manual chart review, and the timeframe for evaluation of goal-concordance remains nebulous, particularly in the setting of long-term chronic illness. In response to some of these challenges, Sanders and colleagues recommend measuring three quality indicators: communication quality, prospective patient or family assessment of goal-concordant care, and the bereaved caregiver experience [7]. Additional challenges may arise where there is disagreement about what constitutes “achievable” goals. For example, a family may hope that a particular treatment, such as a time-limited trial of intubation, will result in a much more significant improvement in functional status than the clinical team believes to be realistic. Ideally, this type of disagreement can be clarified through clear communication about the diagnosis, prognosis, and best estimation of clinical outcomes; in some cases, however, it may be useful to engage expert support. Consultation from palliative care experts, clinical ethics consultation services, social work, and chaplaincy can all be useful toward this aim.

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7.5 

Appropriateness of Care

7.5.1 

7

Before ICU Admission: Advance Care Planning

In the assessment of proportionality of an anticipated ICU treatment, the expected long-term outcome of an ICU admission is ideally balanced against the cost of the treatment (duration, suffering, etc.) in relation to the individual patient’s preferences concerning outcome. This process of patients and professional caregivers discussing future goals of care is called advance care planning [27, 28]. In advance care planning, patients are motivated to share their values, goals, and preferences regarding future potential medical care decisions with their surrogates and physician. Preferably these wishes are documented as advance directives. The advantages of advance care planning over decision-making in an acute setting are the ability of patients to participate without suffering from symptoms that may influence preferences. For example, it can be very hard for a patient in respiratory distress to deny mechanical ventilation in the ICU. It has been shown that it is very helpful for surrogate decision-makers and clinicians if the patient has engaged in advance care planning before the ICU admission and expressed or documented preferences [27, 28]. If future goals or advance directives are known, it enhances goal-concordant ICU care and reduces decisional conflict in surrogate decision-makers [29]. Especially in patients at risk for an ICU admission or with a poor life-expectancy, conversations on future goals of care can prepare patients and surrogates for future decision-making [24, 30]. Therefore, an important future directive is to draw attention to the concept of advance care planning throughout the whole trajectory of patients with an increased risk of an ICU admission. In addition, interventions to promote advance care planning can be targeted on multiple stakeholders (such as physicians, patients, community health workers, insurance companies) [31]. 7.5.2 

During ICU Admission

There is broad consensus that in the process of evaluating the appropriateness of ICU care, current health status and expected mortality and morbidity should be integrated with preferences expressed before or during ICU admission [32]. Desirability of a treatment is ultimately defined by the patient. However, preferences are often not elicited and not always followed [33]. It has been shown that even in patients with a high risk of death, preferences and quality of life considerations are only discussed in the minority of ICU family meetings [34–36]. Moreover, patients who defined goals of care in the prehospital setting did not automatically receive less aggressive ICU care [37]. Subsequently, physicians and nurses frequently report delivering ICU treatments that they perceive to be not aligned with their patients’ preferences [38–40]

77 Life-Sustaining Therapies: Indication, Prognostication, and the Patient’s...

One explanation suggested is that surrogates find it difficult to extrapolate treatment decisions into the present from hypothetical discussions with patients that occurred in the past. Furthermore, prior directives are often poorly documented or difficult to apply in the ICU setting, making them not suitable to promote informed goal-concordant care [41]. In order to foster deliberations on proportionality of treatment, it is suggested to use a decision-making framework. In interprofessional decision-making, it promotes adequate communication, which has been shown to reduce the number of patients with perceived disproportional care [39, 42]. When physicians are prompted to consider (long-term) outcomes, they might be more inclined to disclose prognoses to surrogates in family meetings [43, 44]. 7.5.3 

Substituted Judgment

ICU patients are often incapable to participate in decision-making on life-sustaining treatments. If patients lack documented goals of care or advance directives, substituted judgment is often invoked as a guide for decision-making. Using substituted judgment, doctors and family members try to make the decision that the patient would have made if he or she were able to make decisions. During decision-making in the ICU, an acceptable outcome is considered a quality of life that is congruent with the patient’s wishes. However, the concept of quality of life is complex. It is multi-dimensional (physical, mental, etc.), dynamic and consists of both objective and subjective components. Multiple studies showed a decreased health-related quality of life (HRQoL) in ICU survivors [2, 45, 46]. Concurrently, some studies report that patients are generally satisfied with their health status or even self-report an increased quality of life [45, 47]. This might feel as a discrepancy; although many survivors suffer from the sequelae of their ICU treatments, not all suffer from it in terms of reduced appraisal of their quality of life. This positive appraisal of quality of life despite impairments is called the disability paradox and explained by the response shift. This phenomenon has been described in ICU survivors and reflects someone’s ability to adjust and give meaning to impairments [3, 48–50]. It indicates that quality of life reflects a balance of body and mind within a social context and environment. Patients, who can or learn to adjust to new impairments, may appraise their survivorship more positively than others. Some ICU survivors will be able to re-evaluate their quality of life and will be satisfied with a new health state, while others will not. Understanding which patients will have this ability to cope with persisting disabilities could enhance incorporating future quality of life in decision-making on life-sustaining ICU treatments. Therefore, future studies need to unravel which patient-related, social, or cultural factors positively affect adaptation. In addition, if we could understand which of these factors are modifiable during or after the ICU admission, we might be able to improve the long-term quality of life of ICU survivors.

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Take-Home Messages 55 Prognostication is a substantial prerequisite for the definition of the therapeutic goal. Individual prognostication is multifactorial and thus challenging. It comprises morbidity and mortality of critical illness as well as long-term outcomes. 55 Goal-concordant care considers individualized patient goals, which may be distinct from purely medical goals. 55 High-quality communication encompassing shared decision-making is essential for the evaluation of individualized patient goals. 55 Advance care planning and advance directives can be helpful for surrogate decision-­makers and clinicians when ICU patients are unable to participate in ICU treatment decisions.

Summary

7

Life-sustaining therapies are legitimized by both medical indication and the patient’s consent. Medical indication and accurate prognostication, which comprises survival of critical illness and a potentially ensuing morbidity—then called post-intensive care syndrome—feed into the designation of the therapeutic goal. Individual prognostication is multifactorial, and scoring systems are often validated in patient cohorts not suitable for the individual ICU patient. Goal-concordant care clearly requires the establishment of individualized patient goals, which, however, remains challenging due to paucity of validated methods for measuring goal-concordance as well as due to disagreements about what constitutes “achievable” goals. Explicating patient’s wishes is crucial for goal-concordant care. ICU patients are often incapable to participate in decision-making on life-sustaining treatments. Advance directives, e.g., as a result of advance care planning, can be helpful for surrogate decision-­ makers and clinicians. In situations when the patient lacks decision-making capacity and has no advance directive, substituted judgment is often invoked as a guide for decision-­ making. However, surrogate decision-makers often assess treatment preferences of patients incorrectly whose preferences may even change over time.

References 1. Brinkman S, de Jonge E, Abu-Hanna A, et al. Mortality after hospital discharge in ICU patients. Crit Care Med. 2013;41:1229–36. 2. Soliman IW, de Lange DW, Peelen LM, et al. Single-center large-cohort study into quality of life in Dutch intensive care unit subgroups, 1 year after admission, using EuroQoL EQ-6D-3L. J Crit Care. 2015;30:181–6. 3. Hofhuis JGM, van Stel HF, Schrijvers AJP, et al. ICU survivors show no decline in health-related quality of life after 5 years. Intensive Care Med. 2015;41:495–504. 4. Herridge MS, Tansey CM, Matté A, et  al. Functional disability 5 years after acute respiratory distress syndrome. NEJM. 2011;364:1293–304. 5. Needham DM, Davidson J, Cohen H, et al. Improving long-term outcomes after discharge from intensive care unit: report from a stakeholders’ conference. Crit Care Med. 2012;40:502–9. 6. Kon AA, Davidson JE, Morrison W, et  al. Shared decision-making in intensive care units. Executive summary of the American College of Critical Care Medicine and American Thoracic Society policy statement. Crit Care Med. 2016;44:188–201.

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7. Sanders JJ, Curtis JR, Tulsky JA.  Achieving goal-concordant care: a conceptual model and approach to measuring serious illness communication and its impact. J Palliat Med. 2018;21: S17–27. 8. Turnbull AE, Hartog CS. Goal-concordant care in the ICU: a conceptual framework for future research. Intensive Care Med. 2017;43:1847–9. 9. Sprung CL, Ricou B, Hartog CS, et al. Changes in end-of-life practices in European intensive care units from 1999 to 2016. JAMA. 2019;322:1692–704. 10. Zier LS, Burack JH, Micco G, et al. Doubt and belief in physicians’ ability to prognosticate during critical illness; the perspective of surrogate decision makers. Crit Care Med. 2008;36:2341–7. 11. Heppner HJ, Haitham H.  Intensive care of geriatric patients—a thin line between under- and overtreatment. Wien Med Wochens. 2022;172(5–6):102–8. 12. Steinberg A, Grayek E, Arnold RM, et al. Physicians’ cognitive approach to prognostication after cardiac arrest. Resuscitation. 2022;173:P112–21. 13. Herridge MS. Prognostication and intensive care unit outcome: the evolving role of scoring systems. Clin Chest Med. 2003;24:751–62. 14. Strand K, Flaatten H. Severity scoring in the ICU: a review. Acta Anaesth Scand. 2008;52:467–78. 15. Wunsch H, Guerra C, Barnato AE, et  al. Three-year outcomes for Medicare beneficiaries who survive intensive care. JAMA. 2010;303:849–56. 16. Kress JP, Hall JB.  ICU-Acquired weakness and recovery from critical illness. NEJM. 2014;371:287–8. 17. Bienvenu OJ, Friedman LA, Colantuoni E, et  al. Psychiatric symptoms after acute respiratory distress syndrome: a 5-year longitudinal study. Intensive Care Med. 2018;44:38–47. 18. Jones C, Griffiths RD, Slater T, et al. Significant cognitive dysfunction in non-delirious patients identified during and persisting following critical illness. Intensive Care Med. 2006;32:923–6. 19. Dowdy DW, Eid MP, Sedrakyan A, et  al. Quality of life in adult survivors of critical illness: a systematic review of the literature. Intensive Care Med. 2005;31:611–20. 20. Fernando SM, Qureshi D, Sood MM, et al. Suicide and self-harm in adult survivors of critical illness: population based cohort study. BMJ. 2021;373:n973. 21. Davidson JE, Jones C, Bienvenu OJ.  Family response to critical illness: postintensive care syndrome–family. Crit Care Med. 2012;40:618–24. 22. Cameron JI, Chu LM, Matté A, et al. One-year outcomes in caregivers of critically ill patients. NEJM. 2016;374:1831–41. 23. Choosing wisely critical care [Internet]. [cited 2022 Mar 28]. https://choosingwiselycanada.­org/ recommendation/critical-­care/. 24. Kleinpell R, Sessler CN, Wiencek C, et al. Choosing wisely in critical care: results of a national survey from the critical care societies collaborative. Crit Care Med. 2019;47:331–6. 25. Starr LT, O’Connor NR, Meghani SH. Improved serious illness communication may help mitigate racial disparities in care among black Americans with COVID-19. J Gen Intern Med. 2021;36:1071–6. 26. Halpern SD. Goal-concordant care - searching for the holy grail. N Engl J Med. 2019;381:1603–6. 27. Rietjens JAC, Sudore RL, Connolly M, et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol. 2017;18:e543–51. 28. Sudore RL, Lum HD, You JJ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage. 2017;53:821–32. 29. Chiarchiaro J, Buddadhumaruk P, Arnold RM, et al. Prior advance care planning is associated with less decisional conflict among surrogates for critically ill patients. Ann Am Thorac. 2015;12:1528–33. 30. Downar J, You JJ, Bagshaw SM, et al. Nonbeneficial treatment Canada: definitions, causes, and potential solutions from the perspective of healthcare practitioners*. Crit Care Med. 2015;43:270–81. 31. McMahan RD, Tellez I, Sudore RL. Deconstructing the complexities of advance care planning outcomes: what do we know and where do we go? A scoping review. J Am Geriatr Soc. 2021;69:234–44. 32. Sprung CL, Truog RD, Curtis JR, et al. Seeking worldwide professional consensus on the principles of end-of-life care for the critically ill. The consensus for worldwide end-of-life practice for patients in intensive care units (WELPICUS) study. AJRCCM. 2014;190:855–66.

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33. Lee RY, Brumback LC, Sathitratanacheewin S, et  al. Association of physician orders for life-­ sustaining treatment with ICU admission among patients hospitalized near the end of life. JAMA. 2020;323:950–60. 34. Scheunemann LP, Cunningham TV, Arnold RM, et al. How clinicians discuss critically ill patients’ preferences and values with surrogates: an empirical analysis. Crit Care Med. 2015;43:757–64. 35. Scheunemann LP, Ernecoff NC, Buddadhumaruk P, et al. Clinician-family communication about patients’ values and preferences in intensive care units. JAMA Intern Med. 2019;179(5):676–84. 36. Douglas SL, Daly BJ, Lipson AR. Neglect of quality-of-life considerations in intensive care unit family meetings for long-stay intensive care unit patients. Crit Care Med. 2012;40:461–7. 37. Hartog CS, Peschel I, Schwarzkopf D, et al. Are written advance directives helpful to guide end-­ of-­life therapy in the intensive care unit? A retrospective matched-cohort study. J Crit Care. 2014;29:128–33. 38. Piers RD, Azoulay E, Ricou B, et  al. Inappropriate care in European ICUs: confronting views from nurses and junior and senior physicians. Chest. 2014;146:267. 39. Benoit DD, Jensen HI, Malmgren J, et al. Outcome in patients perceived as receiving excessive care across different ethical climates: a prospective study in 68 intensive care units in Europe and the USA. Intensive Care Med. 2018;44:1039–49. 40. Huynh TN, Kleerup EC, Wiley JF, et al. The frequency and cost of treatment perceived to be futile in critical care. JAMA Intern Med. 2013;173:1887–94. 41. Morrison RS, Meier DE, Arnold RM.  What’s wrong with advance care planning? JAMA. 2021;326:1575–6. 42. Van den Bulcke B, Piers R, Jensen HI, et al. Ethical decision-making climate in the ICU: theoretical framework and validation of a self-assessment tool. BMJ Qual Saf. 2018;27:781–9. 43. Turnbull AE, Hayes MM, Brower RG, et al. Effect of documenting prognosis on the information provided to ICU proxies: a randomized trial. Crit Care Med. 2019;47:757–64. 44. Turnbull AE, Krall JR, Ruhl AP, et al. A scenario-based, randomized trial of patient values and functional prognosis on intensivist intent to discuss withdrawing life support. Crit Care Med. 2014;42:1455–62. 45. Kerckhoffs MC, Kosasi FFL, Soliman IW, et al. Determinants of self-reported unacceptable outcome of intensive care treatment 1 year after discharge. Intensive Care Med. 2019;40:502–9. 46. Cuthbertson BH, Elders A, Hall S, et al. Mortality and quality of life in the five years after severe sepsis. Crit Care. 2013;17:R70. 47. Detsky ME, Harhay MO, Bayard DF, et al. Discriminative accuracy of physician and nurse predictions for survival and functional outcomes 6 months after an ICU admission. JAMA. 2017;317:2187–95. 48. Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med. 1999;48:977–88. 49. Rapkin BD, Schwartz CE. Toward a theoretical model of quality-of-life appraisal: implications of findings from studies of response shift. Health Qual Life Outcomes. 2004;2:14. 50. Hofhuis JGM, van Stel HF, Schrijvers AJP, et al. Conceptual issues specifically related to health-­ related quality of life in critically ill patients. Crit Care. 2009;13:118.

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Prinicples and Practice of Limiting Life-Sustaining Therapies Andrej Michalsen, Jan Bakker, Charles L. Sprung, Sabine Reimund, and Armand Girbes Contents 8.1

Introduction – 82

8.2

Epidemiology – 82

8.3

Reasons for Limiting Life-Sustaining Therapies – 82

8.4

Legal Issues – 84

8.5

Categories of Limitation – 84

8.5.1

 ithholding, Withdrawing, and Active Shortening of the W Dying Process – 84 Time-Limited Trials – 85

8.5.2

8.6

 hallenges Regarding Limiting Life-Sustaining C Therapies – 86

8.7

Implementation of Limitations – 88

8.7.1 8.7.2 8.7.3

 ecision-Making and Communication – 88 D Patients and Families – 88 Limitation of Invasive Treatments and Symptom Control – 89

References – 91

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Michalsen et al. (eds.), Ethics in Intensive Care Medicine, Lessons from the ICU, https://doi.org/10.1007/978-3-031-29390-0_8

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nnLearning Objectives 55 The readers familiarize themselves with the categories of limiting life-sustaining therapies. 55 The readers learn to assess the need for and understand the process of limitation, including the application of time-limited trials. 55 The readers appreciate the importance of interprofessional shared decision-­ making. 55 The readers are informed about the principles of the clinical implementation of limitations.

8.1 

8

Introduction

Technological progress, medical research, and improved education within the treating teams have offered seemingly unlimited treatment options for critically ill or injured patients in modern intensive care units (ICUs). However, team members may still be confronted with questions about the appropriateness of the implementation or continuation of life-sustaining therapies for individual patients in specific circumstances. Often, the therapeutic goal needs to be changed from cure to comfort care, because such measures are not or no longer indicated or approved by the patient (or the legal representative). This chapter describes the procedure of limiting life-sustaining therapies (LSTs), the challenges in the decision-making process as well as the principles of its implementation.

8.2 

Epidemiology

The use of ICU resources has increased in many countries in the recent past. Exemplarily, many patients who die in a hospital in Germany and the USA have received treatment in the ICU preceding death (25% and 47%, respectively); in England, however, this portion amounts to only 10% [1, 2]. Over the last 10–20 years, though, the practice of limiting LSTs has also increased worldwide [3–5]. Providing adequate end-of-life and palliative care in contrast to always avoiding death has gained more attention. The worldwide ETHICUS 2-Study showed an increase in withholding LSTs (13–44%) and in withdrawing LSTs (9–36%) between 1999 and 2016 [3]. Despite agreement on many end-of-life principles among many different health care professionals (physicians, nurses, social workers, clergy, legal experts) around the world, significant uncertainty remains on other important issues regarding LSTs in individual cases [6, 7].

8.3 

Reasons for Limiting Life-Sustaining Therapies

The goal of ICU treatment is to support dysfunctioning or failing organ systems of patients in order to save their lives or at least alleviate their suffering. Based on treatment in the ICU and other treatment facilities thereafter, the patients would ideally

83 Prinicples and Practice of Limiting Life-Sustaining Therapies

regain their health status quo ante and be able to enjoy a quality of life acceptable for them. Despite the differences in legal systems, societal norms, and personal values, there is wide agreement that all measures taken to achieve that goal must rest on two essential foundations: 55 Each and every diagnostic and therapeutic procedure requires a medical indication, i.e., a reasoned assessment that it will benefit the individual patient in his / her actual state of health. Measures that are not (or no longer) indicated should be thoroughly reassessed or even be withheld or withdrawn [8, 9]. 55 Every patient (or the legal representative) has to give informed consent for every medical procedure proposed to him/her—except in emergency scenarios, such as injuries, natural disasters, or terrorist attacks, when victims are incapacitated and their treatment preferences cannot be known. When consent is refused or withdrawn (during the course of treatment), the respective procedures need to be withheld or withdrawn [10, 11]. These two foundations are increasingly challenged for their load-bearing capacity. In the ageing societies of the twenty-first century—especially regarding industrialized countries or regions with affluent subpopulations—the number of (very) old and/or very sick patients being referred for treatment in ICUs has risen considerably [2, 12]. Neither age nor severe illness alone should be considered sufficient triggers to initiate limitation discussions [8, 13]. However, these patients often suffer from chronic diseases either underlying the acute illness that led to their admission to an ICU or reducing the reversibility thereof. Subsequently, even the blessings of modern medicine may not be sufficient to restore the patients’ pre-admission vigour. Due to technological progress, and current life designs, patients’ wishes and claims may exceed the range of what is usually perceived acceptable within their societal setting or health care system [14]. Also, the moral and legal rights of families or spokespersons may vary considerably across regions, countries, cultures, and religious affiliations when a patient is incapacitated and no applicable advance directive is available [14]. In many instances, treatment claims cannot or no longer be justified medically, because they concern non-beneficial or potentially inappropriate interventions: Not all treatment modalities are indicated in any given patient just because they are technically feasible and available [8, 15]. Furthermore, as health care resources are limited, their wasteful spending in terms of overtreatment has become a real challenge over the last years [9, 16, 17]. The inappropriate initiation or prolongation of costly treatments for life-sustaining therapies may result in considerable costs infringing on the ability to provide distributive justice and cannot substantiated by the rule of rescue that some physicians still tend to invoke [16, 18, 19]. Finally, health care crises, such as the COVID-19 pandemic, may invoke the need for limiting LSTs as the need for trained personnel, pharmaceuticals, and/or certain equipment may exceed the supply available or obtainable in due time [20–22]. This dilemma is elaborated upon in 7 Chap. 13. In general, treatments that are not (or no longer) indicated or not (or no longer) consented by the patient or his/her legal representative warrant urgent re-evaluation. In many instances, the extent of treatment will need to be changed and the therapeutic goal will need to be shifted from cure to comfort care only.  

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Specifically, triggers for decisions to limit life-sustaining treatments are considered when survival is expected to be less than a few days, for patients with irreversible acute on chronic conditions, with non-survivable injuries, multi-organ failure (>3 organs for 7 or more days despite adequate therapy), and very severe brain injury (with poor outcome prognosis) [10, 13, 23].

8.4 

Legal Issues

Legal systems vary around the world, and the legal stipulations as to the limitation of LSTs—next to respective institutions’ and health care providers’ willingness to implement them—may vary not only between countries, but also within countries and areas of application. Very generally, every individual can exert the right of self-­ determination, and therefore cannot be forced to undergo any treatment, however indicated it might be. Conflict often arises, though, when the medical indications and the patient’s individual treatment wishes cannot be aligned. A reflection as to legal stipulations around the limitation of LSTs can be found in 7 Chap. 12.  

8 8.5 

Categories of Limitation

8.5.1 

 ithholding, Withdrawing, and Active Shortening W of the Dying Process

Currently, there are three different types of limiting LSTs widely known: Withholding, withdrawing, and active shortening of the dying process [3, 13, 23–25]. Withholding is defined as the decision not to start or increase life-sustaining interventions. It is the most common limitation and is considered legal in most countries. Withdrawing is defined as the decision to actively stop life-sustaining measures that are currently administered. Withdrawing is not permitted by law in some countries where withholding is allowed. In Israel, for example, withdrawing continuous LSTs, such as mechanical ventilation, is prohibited because this is viewed as an act that shortens life [26]. Generally, Western ethical and—in many jurisdictions—legal reasoning strongly hold that there is no difference between withholding and withdrawing LSTs, and that either may be applied with the same justification [23, 27, 28]. However, not all medical practitioners agree with that assessment. Opponents claim a moral difference between actively removing a life-sustaining treatment—an action that typically leads to death shortly thereafter—and not implementing or escalating such treatment—an omission which usually does not rapidly entail the patient’s death [24, 28–30]. Withdrawing LSTs is most often undertaken in individual patients after withholding decisions had already been implemented. At the bedside, ICU physicians in the Middle East and Asia view the two forms as ethically different which is reflected in the lower rate of withdrawing compared to withholding in these regions [3, 4, 24, 31]. Medical teams as well as patients and families frequently perceive withholding easier

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to accept emotionally than withdrawing, and it is important to address these feelings when discussing limitation decisions. Active shortening of the dying process comprises an act (usually administering or withdrawing a treatment to/from a patient) with the clear intention of shortening the dying process—and thereby explicitly shortening his / her life. Active shortening of the dying process is discussed very critically in the literature, and only very low rates are reported [10, 24, 25, 32]. 8.5.2 

Time-Limited Trials

There is often prognostic uncertainty whether the potential benefits of life-sustaining treatments will outweigh the associated burdens. At the same time, patients and/or surrogates may be overwhelmed by the illnesses or injuries they are faced with, and therefore they may be unable to make rapid, but thoughtful deliberations as to the extent of treatment. Not initiating potentially beneficial (life-sustaining) treatments, because of the fear that it might not be feasible or ethically permissible to withdraw them later, would appear unjustified. The risk of such a decision could be avoided by a formal process of initiating a treatment that is limited from the start, yet still goal-­ concordant [23, 33–36]. One option is an intensity limited treatment trial, i.e., admitting a patient to the ICU with the formal agreement to withhold certain components of LSTs from the beginning. A good example is to provide noninvasive ventilation, but to withhold invasive mechanical ventilation should it become necessary. Although this approach may reduce the chance of survival, its primary goal is to reduce the burden of the ICU treatment for the patient. Another option is a time-limited treatment trial (TLT). This option provides more time to assess a patient’s chance of a meaningful recovery according to his or her wishes and values. A TLT establishes an agreement between the health care team and the patient or his/her surrogate(s) to apply intensive treatments, as required by the underlying condition(s), for a fixed period of time. When the time limit is reached, the curative treatment goal is continued if the patient has responded positively to therapy, otherwise the therapeutic goal is changed from cure to comfort care only. Research has shown that TLTs, when administered by protocol through trained teams, help to reduce the invasiveness and duration of ICU treatments by improving the quality of family meetings. However, it has also been shown that TLTs are offered infrequently or, when offered, are discussed and performed incompletely [33, 34, 37, 38]. Hence, a structured approach, based on a suggestion by Quill and Holloway (. Fig. 8.1), may improve the quality and success of these treatment trials [35]. Setting an appropriate time period for a TLT is difficult. It has been suggested that 3–7  days would be appropriate for hypoxic-ischaemic encephalopathy, endstage cardiac failure, and other similar conditions, while 1–2 weeks might be required for conditions such as stroke. A recent review suggested a time limit of at least 24–72 h for acute conditions in patients potentially facing the end of their lives [23, 33–37].  

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..      Fig. 8.1  Five-step-process of time-limited trials (modified from [36])

ICU clinicians assess a prognosis according to the diagnosis • with interven on(s), especially regarding LSTs • without interven on(s), especially regardingt LSTs

ICU clinicians elucidate the pa en'st values and preferences

ICU clinicians iden fy objec ve measurable markers for improvement or detoria on as to the TLT

ICU clinicians establish an apppropriate me period for reevalua on

8

Together with the pa ent / family, ICU physicians outline the measures a er the TLT • con nua on of treatment if pa ent benefits • (possible) extension of TLT if prognosis remains unclear • discon nnua on of LSTs and shi  to comfort care if pa ent does not benefit

8.6 

Challenges Regarding Limiting Life-Sustaining Therapies

Basically, the limitation process comprises withholding or withdrawing all or specific LSTs for medical or consent-related reasons. In order to arrive at a limitation decision, an appropriate medical indication and honest prognostication despite p ­ rognostic uncertainty are paramount [7, 9, 10, 39]. These challenges are elaborated further in 7 Chaps. 2 and 3. Related challenges, at times underestimated, are communication and shared decision-­making, within the team as well as between the team and the patient and/or his family. All team members operate with their personal experiences and expertise, have been shaped by their social, cultural, religious, and political value systems, and are characterized by various idiosyncrasies. The same holds true for patients and their families. Therefore, interprofessional shared decision-making as well as shared decision-making with the patients, their family as well as substitute decision-makers are also paramount in order to arrive at limitation decisions appropriate for each individual patient [3, 4, 6, 14, 24, 40–43]. These topics are elaborated in 7 Chaps. 4 and 5, respectively.  

 

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The number of patients with advance directives, physician orders for life-­ sustaining treatment (POLST), and similar pre-formulated orders has likely risen recently [44–46]. It remains imperative, though, to assess whether a given pre-­ formulated wish of a presently incapacitated patient truly meets the actual circumstances in the ICU or if the patient would have decided otherwise experiencing the negative aspects of such treatment or the disadvantage of foregoing it [23, 44–47]. Unfortunately, often times advance directives are discarded or not followed properly, although they are legally binding in at least some legal systems [48]. For very many ICU patients, an advance directive for end-of-life decisions has not been formulated or is not accessible. Hence the family and finally the surrogate decision-­makers are challenged to discuss possible treatment or limitation options according to the (presumed) wishes of the patient. At stake is the extent of treatment an individual patient would be willing to undergo for a given probability of survival and anticipated quality of life—not the family or the substitute decision-maker. Under emotionally challenging circumstances, such deliberations may be unbearable for some. Importantly, the cultural background of a given patient may have had a striking impact on the respective assessments (see above). In some countries, especially Mediterranean, Middle Eastern, and Asian ones, the values of the family at-­ large must be considered as well, because the patients’ best interest is embedded in the bigger context of the family or the clan [3, 14, 24, 49, 50]. In summary, the treating team needs to clarify that it is neither for them nor the patient or the family to decide about a patient’s life or death. The final decision about the extent of treatment, though, is the result of a potentially quite complex process that involves the health care team as well as the patient or—much more frequently— the patient’s family or other surrogate decision-makers providing information as to the patient’s wishes. The medical team should emphasize that they are making a medical decision as to what is best for the patient based on the input of the patient or family. This should help avoid any guilt the family might have thinking they “decided” to let their loved one die. The goal regarding the extent of treatment combines sensible medical measures with the values and beliefs of the patient. This may lead to an increased invasiveness of treatment measures—however, in far more instances a change from cure to comfort care will need to be implemented. Remarkably so, ICUs with a good ethical climate will manage this task better as compared to those with a bad ethical climate [51, 52]. Details regarding an ethical work climate and the appropriateness of care are described in 7 Chap. 11.  

Case Report A 68-year-old woman with multiple pre-existing medical conditions was admitted to the ICU for postoperative monitoring after femoro-popliteal-bypass surgery following an acute occlusion of the arteria femoralis sinistra. Postoperatively attentive and alert, she unexpectedly experienced a cardiac arrest and was successfully resuscitated, albeit the return of spontaneous circulation occurred 35 min into the resuscitation efforts. A considerably elevated potassium level was found to have been the reason for the cardiac arrest. A few hours after resuscitation, the circulation of the leg operated upon became severely impaired. Emergency surgery to revascularize the leg failed. The patient remained invasively ventilated and required increasing dosages of vasopressors. She

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subsequently developed septic shock presumably due to the necrotic leg distal to the occlusion. An amputation above the knee remained the sole solution to eliminate the focus of her septic condition. The patient’s 35-year-old son was her only relative. His mother had given him a written power of attorney, and subsequently he had to act as her legal representative. Unfortunately, he was emotionally overwhelmed and at first refused to be involved in any deliberation as to the extent of treatment his mother would have wanted. He described her as very self-determined and unwilling to be dependent on someone else’s help on a regular basis. The treating team continued to offer their support and during several family conferences succeeded in making him understand that his task was not to decide between life and death for his mother but to help her by conveying her wishes and values, so the team could suggest an appropriate treatment decision. Considering the multi-organ failure, the patient was suffering from in the meantime, the team suggested changing the therapeutic goal from cure to comfort care only and reached consensus with the son for the best interest of his mother.

8 8.7 

Implementation of Limitations

8.7.1 

Decision-Making and Communication

To facilitate decision-making and implementation as to the limitation of LSTs, using a framework as a guiding tool is helpful for the treating team and the patients/families. Different concepts and approaches have been reported, yet the implementation of a set strategy, including proactive communication and shared decision-making, is strongly recommended in order to prevent potentially intractable treatment conflicts [15, 39, 40, 42, 43, 53–55]. The process of decision-making needs to rest on ethical reasoning and to be done fairly and transparently; the ensuing treatment steps need to be communicated clearly, implemented properly, and documented accurately. The extent of treatment determined at that time must be unambiguously clear to ensure that the patient’s wishes are known and implemented [8, 24, 40, 56]. 8.7.2 

Patients and Families

Shared decision-making within the team as well as between the team and the patients/ families regarding the limitation of LST is paramount. Specifically, patients and their families as well as their legal representatives should be ensured that everything will be done to control and alleviate possible symptoms, such as anxiety, dyspnoea, and pain, during the last phase of the patient’s life and to enable dying with dignity [10, 23, 54, 57, 58]. Spiritual and social support by clergy and social workers should be offered as well, if necessary. Studies show that high quality end-of-life care is significantly associated with lower rates of families’ and surrogates’ anxiety and depressive symptoms as well as with communication improvements [59–62].

89 Prinicples and Practice of Limiting Life-Sustaining Therapies

8.7.3 

Limitation of Invasive Treatments and Symptom Control

Withholding or withdrawing LST clearly does not mean withdrawing care. The definition of “dying with dignity” recognizes “the intrinsic, unconditional quality of human worth but also external qualities as physical comfort, autonomy, meaningfulness, preparedness, and interpersonal connection” [57]. Subsequently, the alleviation of symptoms and the presence of the treating team at the bedside, if required, as well as psychosocial support for patients and families need to be the mainstay of care once the therapeutic goal has been changed. Notably, limiting LSTs does not always mean that the patient will die. The recently published worldwide ETHICUS-2-study reported survival rates of 28% after withholding and 12% after withdrawing LSTs, whereas other studies showed survivals between 8 and 31% after withholding or withdrawing LSTs [3, 63]. The process of withdrawing life-sustaining therapies can differ due to legal stipulations and socio-cultural characteristics. The use of a set protocol adapted to the conditions of the respective ICU is advisable [23, 39, 40, 54, 57, 64]. When appropriate, all drugs and procedures that do not support the new therapeutic goal of comfort care should be discontinued. There is usually no need for a gradual tapering of drugs, such as vasopressors or antibiotics. On the other hand, drugs that help achieve symptom control should be initiated or their doses increased until the intended effect is reached. It needs to be emphasized that there is no objective “maximum dose” for analgesics or anxiolytics (. Fig. 8.2). Whether patients need to be “terminally extubated” or whether only the ventilator settings need to be adjusted to “normal environmental conditions” (fiO2 = 0.21, PEEP = 3–4 cmH2O), remains debatable. It has been shown that there is no difference regarding post 

Opioids

Titraon to symptoms

• Morphine 2 mg i.v. bolus to start, repeons as needed • followed by Morphine i.v. connuously, approx. 2-10 mg/h • no „maximum dosis“ • (alternave: Sufentanil)

Agitaon & Distress

Anxiolycs (Sedava)

Titraon to symptoms

• Midazolam 2mg i.v. bolus to start, repeons if needed • followed by Midazolam i.v. connuously, approx. 2-10 mg/h • no „maximum dosis“ • (alternaves: Propofol, Lorazepam, Lormetazepam)

Excessive Secreons

Ancholinergica*

Pain & Dyspnoea

Postextubaon Stridor

Inhaled epinephrine (and morphine i.v.)

Titraon to symptoms

Scopolamine 1-2mg t.d. (1 patch per three days), Glycopyrrolidate 0,2 mg i.v. (repeatedly, if needed)

Titraon to symptoms

* Cave: agitaon and delirium caused by ancholinergica

..      Fig. 8.2  Pharmaceutical symptom control after transition from cure to comfort care only (modified from [23])

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traumatic stress symptoms in relatives as to the two methods. “Terminal extubation” was associated with lower job strains for assistant nurses and more airway obstructions and gasps for patients. Most likely, procedures should be determined by the experience and best practice of the respective ICU team, in a way that maintains patient comfort and dignity [10, 65, 66]. There has been extensive debate regarding the withdrawal of fluids and nourishment during end-of-life care. In principle, an awake patient should receive fluids and nourishment orally according to his/her request. As there is no medical need for caloric intake at the end of a patient’s life, in all other circumstances fluids should be administered as required for symptom control, whereas nutrition can be discontinued [23, 54, 57], as long as legal requirements are not withstanding. As studies have shown that distressing symptoms occur in a high percentage of critically ill patients treated in ICUs, it is necessary to assess, address, and document such symptoms, especially during end-of-life care [23, 67]. Family involvement can be helpful as their perception of the patient’s condition can help detect early signs of discomfort. Therapy always needs to be adjusted to the individual patient’s needs (. Fig. 8.2). 55 Pain and dyspnoea Pain can be assessed clinically and with standardized tools, for instance, using the Numeric Rating Scale (NRS) for mentally capable patients or the Critical Care Pain Observation Tool (CCPOT) for incapacitated patients [68, 69]. Furthermore, some vital signs may corroborate the assessment just described, for instance, tachycardia, tachypnoea, or grimacing. Dyspnoea and respiratory distress can be assessed clinically and with the Respiratory Distress Observation Scale (RDOS) [70], for example, typical signs comprise tachypnoea and the usage of accessory muscles. Pain and distress are usually treated with opioids, mostly with morphine. 55 Agitation, fear, and distress Agitation can be assessed clinically and by applying the Richmond Agitation-­ Sedation Scale (RASS) [71], for example. As agitation, fear, and distress can have multiple reasons, such as dyspnoea, hypoxia, the inability to pass urine, pain, anxiety, or delirium, it is important to try find out the particular one(s) for the individual patient and address it/them both with psychosocial support and pharmaceutically, usually with benzodiazepines. 55 Excessive secretions Excessive secretions can increase dyspnoea and may cause distress for the patient and family. Next to regular suctioning, excess secretions can be treated with anticholinergic drugs, such as ipratropium bromide, scopolamine, or glycopyrrolidate.  

8

Despite likely extensive prior deliberations, the transition from cure to comfort care and symptom control may still be perceived to be sudden and unexpected, especially by the family. It should be recognized that the timing of the withdrawal of life-­ sustaining therapies can be influenced to a small degree by clinicians in order to allow some time for patients and their families to experience a decent farewell. As to the comfort needs of the patients and their families, a number of measures can be taken to facilitate the transition to comfort care, alleviate discomfort and stress as well as prevent post-intensive care syndrome-family. These measures include, but are not limited to, transferring the patient to a separate room in the ICU to allow

91 Prinicples and Practice of Limiting Life-Sustaining Therapies

for unimpeded access for family; accepting religious rituals, as long as they do not impede medical care or other patients’ well-being; asking for palliative care consultation, if needed; and offering support during bereavement [23, 39, 57, 61, 65]. Take-Home Messages 55 Every diagnostic and therapeutic measure, including life-sustaining therapies, needs to be based on a proper medical indication and the patient’s informed consent—and both need to be re-evaluated during the ICU stay. 55 If prognostic uncertainty is considerable and/or if the patient’s preferences are not well established, a time-limited treatment trial is usually warranted. 55 If (properly administered) LSTs are not (or no longer) effective, the goal of treatment needs to be re-evaluated and often times changed from cure to comfort care only. 55 To facilitate decision-making and implementation as to the limitation of LSTs, using a framework as a guiding tool is helpful for the treating team and the patients/families. 55 The alleviation of symptoms and psychosocial support for patients and families need to be the mainstay of care once the therapeutic goal has been changed. 55 It is of utmost importance to reduce moral distress among the team regarding limitation decisions; this is to be achieved by adequate interprofessional collaboration and communication

Summary Decisions about the extent of treatment for each and every patient need to be based on a medical indication and the patient’s consent. Often times, such decisions are the result of a complex process that involves the health care team’s assessment of appropriate medical options as well as the patient’s values and preferences provided by the patient or—much more frequently—his/her family or other surrogate decision-makers. The (ongoing) application of LSTs needs to be re-evaluated regularly, and treatments that are not (or no longer) indicated or not (or no longer) consented by the patient or his/her legal representative usually need to be withheld or withdrawn. To facilitate the respective decision-making and implementation, using a framework as a guiding tool is helpful for the treating team and the patients/families. Adequate interprofessional shared decision-making among the team as well as shared decision-making between the team and the patient/the family are of utmost importance to guide the shift from cure to comfort care only. Whereas clinically all drugs and procedures that do not support the new therapeutic goal of comfort care should be discontinued, drugs that help achieve symptom control should be initiated or their doses increased until the intended effect is reached.

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53. 54. 55. 56.

57. 58.

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59. 60. 61. 62. 63. 64.

65.

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67. 68.

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observational study in 68 intensive care units across Europe and the United States. Intensive Care Med. 2020;46:46–56. Benoit DD, Jensen HI, Malmgren J, et al. Outcome in patients perceived as receiving excessive care across different ethical climates: a prospective study in 68 intensive care units in Europe and the USA. Intensive Care Med. 2018;44:1039–49. Van Keer RL, Deschepper R, Huyghens L, et al. Withholding/withdrawing life-sustaining treatment in a multiethnic critical care setting: an ethnographic study. J Palliat Med. 2021;24:338–46. Downar J, Delaney JW, Hawryluck L, et al. Guidelines for the withdrawal of life-sustaining measures. Intensive Care Med. 2016;42:1002–27. Curtis JR, White DB.  Practical guidance for evidence-based ICU family conferences. Chest. 2008;134:835–43. Neitzke G, Böll B, Burchardi H, et al. Documentation of decisions to withhold or withdraw life-­ sustaining therapies: recommendation of the Ethics Section of the German Interdisciplinary Association of Critical Care and Emergency Medicine (DIVI) in collaboration with the Ethics Section of the German Society for Medical Intensive Care and Emergency Medicine (DGIIN). Med Klin Intensivmed Notfmed. 2017;112:527–30. [Erratum: Med Klin Intensivmed Notfmed 2017; 112:530]. Cook D, Rocker G.  Dying with dignity in the intensive care unit. N Engl J Med. 2014;370: 2506–14. Curtis JR, Rubenfeld GD. Managing death in the intensive care unit. New York: Oxford University Press; 2001. Metaxa V, Anagnostou A, Vlachos S, et  al. Palliative care interventions in intensive care unit patients. Intensive Care Med. 2021;47:1415–25. White DB, Angus DC, Shields AM, et al. A randomized trial of a family support intervention in intensive care units. N Engl J Med. 2018;378:2365–75. Petrinec AB, Martin BR. Post-intensive care syndrome symptoms and health-related quality of life in family decision-makers of critically ill patients. Palliat Support Care. 2018;16:719–24. Davidson JE, Aslakson RA, Long AC, et al. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med. 2017;45:103–28. Lobo SM, De Simoni FHB, Jacob SM, et al. Decision-making on withholding or withdrawing life support in the ICU: a worldwide perspective. Chest. 2017;152:321–9. Truog RD, Cist AF, Brackett SE, et  al. Recommendations for end-of-life care in the intensive care unit: the Ethics Committee of the Society of Critical Care Medicine. Crit Care Med. 2001;29:2332–48. Efstathiou N, Vanderspank-Wright B, Vandyk A, et al. Terminal withdrawal of mechanical ventilation in adult intensive care units: a systematic review and narrative synthesis of perceptions, experiences and practices. Palliat Med. 2020;34:1140–64. Robert R, Le Gouge A, Kentish-Barnes N, et al. Terminal weaning or immediate extubation for withdrawing mechanical ventilation in critically ill patients (the ARREVE observational study). Intensive Care Med. 2017;43:1793–807. Puntillo KA, Arai S, Cohen NH, et al. Symptoms experienced by intensive care unit patients at high risk of dying. Crit Care Med. 2010;38:2155–60. Jensen Hjermstad M, Fayers PM, Haugen DF, et al. Studies comparing numerical rating scales, verbal rating scales, and visual analogue scales for assessment of pain intensity in adults: a systematic literature review. J Pain Symptom Manage. 2011;41:1073–93. Zhai Y, Cai S, Zhang Y. The diagnostic accuracy of critical care pain observation tool (CPOT) in ICU patients: a systematic review and meta-analysis. J Pain Symptom Manage. 2020;60: 847–56.e13. Zhuang Q, Yang GM, Neo SH, et  al. Validity, reliability, and diagnostic accuracy of the Respiratory Distress Observation Scale for assessment of dyspnea in adult palliative care patients. J Pain Symptom Manage. 2019;57:304–10. Sessler CN, Gosnell MS, Grap MJ, et al. The Richmond Agitation-Sedation Scale: validity and reliability in adult intensive care unit patients. Am J Resp Crit Care Med. 2002;166:1338–44.

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Focus Topic: Decision-­Making Regarding Resuscitation from Cardiac Arrest in the ICU Jochen Dutzmann, Gavin M. Joynt, Carole Boulanger, Jan Bakker, and Nicholas Sadovnikoff Contents 9.1

Introduction – 96

9.2

 thical Principles in the Context of Resuscitation E in the ICU – 97

9.2.1 9.2.2

( Distributive) Justice – 97 Beneficence, Non-maleficence, and Autonomy – 97

9.3

 ithholding or Terminating Resuscitative W Attempts – 99

9.3.1 9.3.2 9.3.3

“ Slow Codes” – 99 Do Not Attempt Resuscitation (DNAR) Orders – 100 Unilateral Physician Imposed DNAR Orders – 101

9.4

 pecial Challenges: Extracorporeal Cardiopulmonary S Resuscitation – 102

9.5

 ommunication of Fatal and Non-fatal Cardiac C Arrest in the ICU – 103 References – 104

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Michalsen et al. (eds.), Ethics in Intensive Care Medicine, Lessons from the ICU, https://doi.org/10.1007/978-3-031-29390-0_9

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nnLearning Objectives 55 In this chapter, readers will learn how to apply ethical principles regarding the utilization of cardiopulmonary resuscitation in the intensive care unit. 55 Readers will be able to deliberate on when and how to withhold or withdraw resuscitative attempts. 55 Readers will learn how to implement do-not-attempt-resuscitation orders. 55 Readers will understand the challenges and pitfalls of extracorporeal life support in resuscitation attempts. 55 Readers will become familiar with techniques for communication of fatal and non-­ fatal cardiac arrest in the ICU to families and surrogates.

9.1 

9

Introduction

Most healthcare professionals “know the drill” around a cardiopulmonary arrest, including in an intensive care unit (ICU). It is something that can occur daily at ICUs all around the world with incidences varying between 6 and 78/1000 ICU admissions. Patient outcome is difficult to prognosticate with survival to hospital discharge reported to be in the range from 0 to 79% and long-term survival in the range of 1–69% [1]. Resuscitation guidelines are clear and provide specific recommendations to ensure that all know their roles and how to carry them out [2, 3]. While data as well as ethical considerations that focus on out-of-hospital (OHCA) and in-­hospital cardiac arrest (IHCA) are accumulating, intensive care unit cardiac arrest (ICUCA) is not well investigated, and ethical reflections are more scarce. ICUCA differs in several ways from cardiac arrests occurring outside the hospital or in other areas of the hospital. The vital signs of ICU patients are continuously monitored; consequently, the risk of unwitnessed arrest is low and the delay to initiation of CPR attempts is likely to be short. The advantages of early recognition and advanced invasive treatment options in promoting chances for survival are, however, negatively balanced by pre-existing conditions and severity of illness [4]. Further, the fact that a patient has suffered ICUCA in spite of the enhanced monitoring and intensive therapies provided in that environment reflects a particularly substantial disease burden. The practical medical aspects of the cardiac arrest are only one component in the management of ICUCA. More challenging questions may arise at the moment of cardiac arrest and during resuscitation efforts: Should resuscitation attempts be started to begin with? Once started, when should they be terminated? What is the likelihood that the patient recovers, and can we predict quality of life post-arrest? What evidence is available to guide us in not just regarding the medical event but in the broader task of taking into account aspects of care such as potential ethical challenges, psychosocial concerns, and communication surrounding the event [5]? At the time of an ICUCA, treatment options, limitations, and prognostication including expected quality of life would ideally have already been discussed with the patient, and consent to either full or limited care made by the patient as part of a process of shared decision-making earlier during ICU treatment. However, an unexpected ICUCA may change severity of illness and worsen prognosis, necessitating a re-evaluation of the basis and ongoing validity of the patient’s consent. This

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a­ dditional challenge can further complicate decision-making during resuscitation efforts for ICUCA.

9.2 

Ethical Principles in the Context of Resuscitation in the ICU

Application of the ethical principles of “beneficence,” “non-maleficence,” “autonomy,” and “(distributive) justice” in the management of ICUCA may be challenging, not least because their interpretation in the context of resuscitation in the ICU may vary among different countries and cultures for various reasons [6]. In spite of such limitations, these ethical principles can generally be applied at three main levels of ethical decision-making: (1) the microlevel of individual cases and decisions (“ethics at the bedside, clinical ethics”); (2) the macrolevel of society as a whole; and (3) in between, the mesolevel: authorities or institutions that mediate between the individuals and that larger society, e.g., directors of hospitals and departments. 9.2.1 

(Distributive) Justice

The ethical principle of “justice” predominantly comprises aspects about resource allocation in that treatment should be fair, equitable, and appropriate. However, physicians’ resource allocation behavior at the microlevel has been reported to be highly variable and strongly influenced by context-related factors [7]. It has therefore been recommended that decisions around resource allocation be more explicit, transparent, comprehensible, and defensible at the meso- and macrolevel. Consideration of the ethical principle of “(distributive) justice” should be of secondary importance in immediate ethical decision-making at the microlevel in the context of ICUCA. Decisions about (just) resource allocation at the meso- and macrolevel, however, may still have indirect impact on the management of ICUCA. Cardiac arrest patients should be provided with the same timely and high-quality resuscitation and post-resuscitation care, no matter where they experience cardiac arrest. Variation in OHCA outcomes among different countries has been at least in part attributed to international differences in emergency care organization and quality in variable bystander CPR rates [8–10]. By contrast, variation in ICUCA may be at least in part due to variation in the availability of specific hospital resources, e.g., technology for extracorporeal life support (ECLS), and specialized trained personnel. Even among high-resource countries with wide implementation of extracorporeal CPR (eCPR), this resource is predictably concentrated in urban tertiary hospitals with availability of advanced cardiovascular care [6]. 9.2.2 

Beneficence, Non-maleficence, and Autonomy

Medical interventions, particularly in the very ill ICU population, are potentially harmful, and for those patients who survive, an outcome resulting in suffering and loss of dignity could be considered by the patient to be inadequate in terms of qual-

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ity of life going forward. The ethical principles of “beneficence” and “­ non-­maleficence” tend to be externally value-laden—the concept of an acceptable outcome needs to be individually defined with regard to the patient’s right to self-­determination of what is and is not acceptable. Physicians should ensure that the balance favors objective benefit while taking into account the preferences and goals of the patient. Ethical challenges may particularly arise when there is uncertainty about potential benefit and harm in situations where patients cannot comprehend their options or communicate their preferences. In the context of CPR in general, these ethically difficult decisions occur when considering initiating CPR, terminating CPR, and limiting life-­sustaining treatments following return of spontaneous circulation (ROSC) [6]. Neurological outcome constitutes the key issue of prognostication post survival from cardiac arrest. Predicting whether CPR is likely to result in a neurologically meaningful survival ideally should be coupled with advance knowledge of the patient values and preferences—what would the patient consider to be an acceptable neurologic outcome? While neurological prognostication can be extremely challenging, efforts should be made to prevent harmful resuscitation efforts—that is: outcomes the patient would find unacceptable, given the statistic that two-thirds of patients admitted to an ICU after resuscitation from OHCA will die from hypoxic-ischemic brain injury (HIBI) [11]. In OHCA survivors to hospital discharge, HIBI has been reported to result in long-term moderate-to-severe neurological disability or death in about 44% at 12 months post-arrest [12]. IHCA differs from OHCA in terms of patients’ prearrest, comorbidities, prearrest therapeutic interventions, cardiac arrest-precipitating cause, and overall prognosis. In the United States, among IHCA survivors, the proportions of clinically significant and severe disability were 28 and 10%, respectively, in a study in 2019 [13]. However, data regarding neurological outcome of ICUCA survivors are very scarce, highly variable, and at least in part dependent on the patient profile of the study population [1]. Anthi and colleagues reported very optimistic results with a 69% survival rate and no neurological sequelae among ICUCA survivors from a unit treating cardiac surgery patients [14]. In contrast, Yi and colleagues reported unfavorable outcome in a neurointensive care unit population with only 5% achieving complete recovery after ICUCA [15]. Other studies reported 48–95.6% of the survivors to have cerebral performance categories (CPC) of 1–2 at 3 months [16– 20]. CPC is the commonly used measure for reporting neurological outcome after cardiac arrest, with CPC 1 corresponding to the best possible outcome (no or minor disabilities) while CPC 5 corresponding to death. In addition, ICUCA patients differ from other cardiac arrest patients in terms of prearrest status: by the very nature of their location, they already suffer from critical illness with limited or unclear prognosis. Prognostication of ICUCA will therefore be inseparably intertwined with prognostication of the underlying critical illness. Decision-making had been made yet more complicated by the data for post-arrest hypothermia, with 72 h recommended post ROSC to await maximal neurologic recovery [21]. Moreover, cardiac arrest outcome and prognostication have been recently challenged by the advent of eCPR. The location of the patient in the ICU can be viewed as a benefit in that it presents some known clinical factors about the patient to assist in decisionmaking; hopefully, it has also allowed for the conduct of timely discussions with patients and their families about their wishes on the current admission prior to ICUCA.

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In conclusion, uncertainty about potential benefits and harms of resuscitation in ICUCA remains high. At the same time, a thorough assessment of individuals based on the ethical principles of “beneficence” and “non-maleficence,” already commonly challenging, may well be impossible in a majority of cases unless appropriate discussions and patient-centered decision-making have been achieved. To the greatest extent possible, an attempt to respect the patient’s autonomy and previously articulated wishes coupled with the best prognostic estimation should be undertaken.

9.3 

Withholding or Terminating Resuscitative Attempts

As with other medical treatments, starting and continuing resuscitation attempts require confirmation of both treatment pillars, the clinical indication, and the patient’s consent. There are no clear criteria from which to predict the success or failure of CPR accurately. However, inappropriate resuscitative attempts should be less likely to be undertaken in the ICU in contrast to other inpatient areas or places outside the hospital. Assuming the patient has not just arrived in the ICU, prognosis of the underlying critical illness should have already been assessed and discussed, and treatment limitations—especially regarding resuscitation—should have already been established in a process of shared decision-making. As a rule, CPR should not be started in the context of advanced directives that constitute do-not-attempt-resuscitation (DNAR) orders or in the absence of clinical indication, i.e., if no physiological benefit can be expected. The latter might be the case when vital functions have deteriorated despite maximal intensive care treatment, for example, as in end-stage septic shock accompanied with progressive multiple organ dysfunction syndrome [22, 23]. The appraisal of prognosis, and any decision to label it unfavorable, of course, must always integrate all available clinical results. Single criteria, e.g., pupil size, CPR duration, end-tidal carbon dioxide value, comorbid state, or lactate value, should not alone inform decision-making [24]. 9.3.1 

“Slow Codes”

In situations of failure to arrive at DNAR status despite grave clinical prognosis, ICU physicians should not undertake so-called slow codes. This refers to the deceptive practice of purposely delivering ineffective resuscitation with a pretense of attempting to save the patient’s life [24]. It is neither a “failed code,” in which all appropriate efforts are made, yet the patient dies, nor is it one that results from the medical team’s previous negotiation with the patient or the patient’s family, having decided on a brief trial of defibrillation or vasopressor drugs, for example, with rapid termination of the effort if the patient does not respond [25]. Unskillfully, the practice of “slow codes” remains prevalent in some environments where clinicians are reluctant to discuss end-of-life decisions or where the patient or family have not agreed to DNAR order [26, 27]. If such order is medically indicated, though, patient or family claims to implement CPR are void. Use of “slow codes” is indisputably ethically problematic: In offering an ineffective option that entails potential for considerable harm, the physician fails to meet the bio-

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ethical principle of non-maleficence [25]. Furthermore it may compromise respect for the patient’s autonomy. In most cases, physicians make the decision to perform a “slow code” unilaterally, without the consent of the patient or surrogate—after all, why should a patient agree to an ineffective therapeutic option [25, 28]? By general understanding, patients or families do not even have to agree to withhold a treatment measure that is not indicated. The ethical violation is further compounded by the fact that the physician is patently practicing deception when truth-telling and transparency are a part of the implicit contract between physicians and their patients and surrogates. “Slow codes” can be prevented by discussing a patient’s end-of-life treatment preferences in advance, possibly resulting in DNAR orders, especially in critically ill patients at the ICU, in whom cardiac arrest is more likely than in patients outside the ICU [25, 29]. Beck and colleagues reported that only 27–71% of all patients for whom CPR was perceived as inappropriate had a DNAR order [30]. Reasons for the omission include fear of possible negative reactions from family members, physicians’ discomfort with the topic of death and dying, the belief that honest discussion of the prognosis would lead to a loss of hope, and an assumption that patients and their families should be the ones to initiate dialogue [31–34]. Effective involvement of terminally ill patients and their surrogates in resuscitation decisions is challenging and requires excellent listening and communication skills as well as a suitable environment and time [35]. 9.3.2 

Do Not Attempt Resuscitation (DNAR) Orders

From an ethical perspective, a DNAR order is generally perceived as the advance decision to withhold a potentially life-prolonging procedure such as CPR.  In the ICU setting where patients are highly monitored, clinical decision-making regarding the potential inappropriateness of an intervention may be clearer. ICUs may adopt and advocate a shared decision-making model which includes respect for patient autonomy, robust family involvement, and incorporation of physician expertise [36]. Regular family communication is recognized as essential to optimizing the process. Treatment escalation plans may involve advanced care planning that identifies a ceiling of care around life-sustaining treatments such as CPR and aims to prevent unwanted or unnecessary treatments [24]. Timely palliative care interventions and early structured discussions regarding DNAR have been shown to be important factors that may increase the implementation of DNAR orders [37, 38]. In jurisdictions where DNAR orders are lawful, it is recommended that implementation proceed with the following steps: 55 Every hospital inpatient should be reviewed soon after admission to determine whether they may be a candidate for DNAR orders, and this discussion should be revisited on a periodic basis [39]. Such evaluations should take place in consultation with a senior doctor and relevant members of the health care team in order to determine the appropriateness of CPR, should cardiac arrest occur. 55 While no definitive and well-validated scoring system is available to inform the choice to recommend individual DNAR orders, important factors to take into account include the patient’s wishes, frailty, premorbid status (including the presence of metastatic or hematological cancer, or need for dialysis, impaired neurologic status), acute illness (medical non-cardiac illness, renal or hepatic

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insufficiency, respiratory failure, pneumonia, sepsis, major trauma or stroke, or shock state), or previous admission from a nursing facility [40]. While the presence of any of the individual factors alone may not be sufficient as predictors, a senior doctor’s clinical judgment of predicted post CPR life-expectancy and quality of life, based on a combination of these or similar factors, should be made to identify patients for whom DNAR and/or “treatment escalation plan (TEP)” orders may be appropriate. 55 Once the patient is identified as a candidate, the question of whether to institute a DNAR order should always be discussed with the patient or with the family and the surrogate if the patient cannot participate. An approach similar to a “goals-­ of-­care” discussion should be followed in order to fully and honestly inform the patient/surrogate of the benefits and burdens to be expected should CPR become necessary [24]. Generally, the patient/surrogate is free to make a fully informed decision regarding the desire for DNAR status. Unilateral physician imposed DNAR orders may be justifiable but will be discussed later. 55 Once agreed upon, the patient’s DNAR status should be clearly documented along with the reasons for the decision in the patient record [41]. All members of the health care team should be made aware of the patient’s DNAR status, and an appropriate method of accessing DNAR status should be available to all health care personnel potentially involved in the patient’s care [24, 41]. It should also be clearly understood that the DNAR order refers only to resuscitation in the event of a cardiac arrest, and other care and treatment should continue [42]. 9.3.3 

Unilateral Physician Imposed DNAR Orders

For some patients with severe, chronically debilitating or terminal disease, cardiac arrest is an anticipated and terminal event. It can be justifiably argued that doctors may unilaterally choose not to provide CPR—in spite of requests by the patient or family to do so—when it is not or no longer medically indicated because the vital functions have deteriorated despite maximal therapy for such conditions [24, 43]. In such circumstances, it may be reasonable for the treating team to establish a DNAR status by interprofessional consensus, with clear documentation of reasons for the decision. Naturally, sensitive and clear communication with the patient and family should follow. In this setting, patient autonomy is allegedly overridden. However, the DNAR order is based on the minimal likelihood of CPR to provide meaningful benefit to the patient being outweighed by a disproportionately high potential for the patient’s untoward suffering. It has recently been suggested that an absolute lack of resources during health care system crises may be sufficient grounds to justify unilaterally imposed DNAR orders on patients with poor prognoses. For example, patients with COVID-19 and respiratory causes of cardiac arrest have very poor survival prognoses. In addition, such post-cardiac arrest patients almost invariably require prolonged ICU care. In situations where the allocation of life-sustaining ICU treatment resources must be prioritized, it may be justifiable to impose unilateral DNAR orders. From an ethical perspective, this does not rely on the usually implemented deontological principles, but on the utilitarian goals of distributive justice—attempting to provide the greatest benefit for the greatest number of patients [44–46].

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9.4 

9

 pecial Challenges: Extracorporeal Cardiopulmonary S Resuscitation

Recent technological advances have added complexities to deciding on appropriate care in patients who fail to gain ROSC or who gain ROSC only after prolonged resuscitation attempts. The growing availability of urgent mechanical circulatory support such as ECLS has created the concept of eCPR [47]. A portable ECLS device is used as an adjunct to standard CPR in patients when conventional CPR has failed. This can result in meaningful survival with some patients being resuscitated even after long periods of CPR.  Twohig and colleagues compared extracorporeal and conventional CPR in a recent systematic literature review of 17 observational trials with a minimal data outcome of 30-day hospital mortality. The authors reported improved survival (OR 0.40 (0.27–0.60)) and better neurological outcomes (OR 0.10 (0.04–0.27)) for eCPR compared to conventional CPR in selected patients. Characteristics that were associated with improved survival in patients receiving eCPR included an initial shockable rhythm and a shorter low-flow time. However, all studies analyzed were of low methodological quality and heterogeneity was high [48]. Even though some patients may profit under some circumstances from eCPR, patient collective and circumstances have not be clearly defined yet. Furthermore, the evidence base for the cost-effectiveness and ethical framework of eCPR in general remains limited. At the same time, eCPR technologies require large investments in personnel and equipment resources. Thus, guidelines of the European Resuscitation Council point out the urgent need for more research on patient selection, modifiable outcome variables, risk-benefit, and cost-effectiveness of eCPR, and no general recommendation as to indication or performance of eCPR were given [24]. Furthermore, the concept of eCPR creates ethical challenges by the temporary replacement of cardiopulmonary function that otherwise is a prerequisite for being alive. These challenges concern not only patients and their surrogates, but also their multi-professional treatment teams and ultimately society as a whole. Even although the scenario of an ICUCA might be dramatic, ICU physicians should carefully consider the initiation of ECLS with regard to the aforementioned ethical principles and treatment pillars. ECLS in ICUCA is usually initiated as a bridge to recovery or decision-making. However, it can become a bridge to transplantation or to a destination device (long-term ventricular assist device/“artificial heart”) in post-arrest refractory cardiac failure [49]. Clearly, ECLS therapy without an achievable goal of recovery, decision-making, transplantation, or destination device therapy is largely considered inappropriate. The appropriateness of ECLS therapy after ROSC should be (re-)evaluated thoroughly and regularly, e.g., during daily rounds. This involves employing clearly defined inclusion and exclusion criteria for ECLS initiation and continuation in eCPR to facilitate rapid decision-making. ECLS therapy should be discontinued if at least one of the three following questions is answered in the negative: 1. Can the pre- or redefined therapeutic goal realistically still be achieved? 2. Is the pre- or redefined therapeutic goal known or presumed to be consented to by the patient? 3. Do the intended benefits for patient compensate for the burdens and harms of ECLS therapy?

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There is a scarcity of reports or studies about the process of shared decision-­making around ECLS therapy, especially in situations of resuscitation. Recently, Piscitello and colleagues published a survey canvassing physicians from hospitals conducting ECLS cases in the United States [50]. Participants reported that irrespective of the patient’s stability, shared decision-making for ECLS therapy took place in only onethird of all ECLS cases, and the average time for shared decision-making in instable patients was 7.5 min. However, only 29% of the physicians offered patients or their surrogates discontinuation of ECLS therapy. Withdrawal of ECLS therapy was recommended in not more than 36% of patient cases, despite the fact that the predefined therapeutic goal seemed unattainable (“bridge to nowhere”). Such situations can cause considerable moral distress among members of the multi-professional therapeutic team and call for improved communication between all members of the team. Uncertainty and moral distress of the team may even affect relationships with the patient and family/surrogates; therefore, adequate communication skills as well as sufficient resources are paramount for successful implementation of eCPR [51].

9.5 

 ommunication of Fatal and Non-fatal Cardiac Arrest C in the ICU

While it is always difficult to convey news of a sudden or “anticipated” death to families, there is evidence that a structured procedure can help reduce the suffering they experience [52]. Preparing families and friends for the possibility of death in stages during the course of intensive care therapy will be helpful. While not becoming emotional, members of the multi-professional team should convey a sense of empathy that the resuscitation was ultimately not successful [5]. The protocol known by the somewhat unfortunate acronym SPIKES—initially developed to deliver bad news in patients with cancer—might help to memorize the steps and consider their elements to facilitate the delivery of bad news after ICUCA [53]: 55 STEP 1: SETTING UP the interview. 55 STEP 2: Assessing the patient’s surrogate’s PERCEPTION. 55 STEP 3: Understanding the patient’s surrogate’s need for information (INVITATION). 55 STEP 4: Sharing KNOWLEDGE and information. 55 STEP 5: Addressing EMOTIONS with empathic responses. 55 STEP 6: Strategy and Summary

If the patient survives, communication of the event to the patient’s surrogates can also be challenging. After surviving ICUCA, frequent communication with the family of a resuscitated patient is important for understanding, clarifying and, if needed, adjusting their expectations. In the era of therapeutic hypo−/normothermia, post-­resuscitation care may extend through a period of 3–7 days. This period should be viewed as a valuable opportunity for the delivery of grief counseling and support to family. Team members skilled at compassionate communication should accurately convey “realistic expectations,” but not deprive families of hope where

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uncertainty exists. If prognostic indicators trend unfavorably, the family can be guided through a “weaning of hope” until acceptance of the loss of their loved one can occur [5]. Take-Home Messages 55 CPR still constitutes a conditional treatment measure, not a compulsive one. Therefore, CPR should not be started in the context of DNAR orders or in the absence of a medical indication 55 So-called slow codes are indisputably ethically problematic and should be avoided. 55 Limitations of therapy and a change of the therapeutic goal to palliative care should be discussed early and in a structured manner, but can also be unilaterally imposed by physicians in situations of minimal likelihood of CPR to provide meaningful benefit. 55 The appropriateness of ECLS therapy should be (re-)evaluated thoroughly and regularly. 55 Fatal and non-fatal cardiac arrest in the ICU should be communicated in a structured manner.

9

Summary ICUCA differs in several ways from OHCA and IHCA, not only in the availability of advanced invasive treatment options (like eCPR), but also in preexisting conditions and severity of illness that may makes prognostication more difficult. Application of the ethical principles of beneficence, maleficence, autonomy, and (distributive) justice and careful consideration of the treatment pillars “medical indication” and “patient’s consent” is a special challenge, especially in the context of withholding or terminating resuscitative attempts. DNAR orders can help avoid potentially inappropriate escalation of intensive care treatment, and while ideally employed in consensus with the patient and family, may also be employed by the medical team alone when prognostic outlook is particularly poor.

References 1. Efendijev I, Nurmi J, Castrén M, et al. Incidence and outcome from adult cardiac arrest occurring in the intensive care unit: a systematic review of the literature. Resuscitation. 2014;85:472–9. 2. Gräsner JT, Herlitz J, Tjelmeland IBM, et  al. European resuscitation council guidelines 2021: epidemiology of cardiac arrest in Europe. Resuscitation. 2021;161:61–79. 3. Panchal AR, Bartos JA, Cabañas JG, et al. Part 3: Adult basic and advanced life support: 2020 American Heart Association guidelines for cardiopulmonary resuscitation and emergency cardiovascular care. Circulation. 2020;142:S366–468. 4. Myrianthefs P, Kalafati M, Lemonidou C, et  al. Efficacy of CPR in a general, adult ICU. Resuscitation. 2003;57:43–8. 5. Dickinson MG, Meeusen CM, Maison DL. Management of hospitalized patients with unexpected cardiac arrest. In: Goodlin SJ, Rich MW, editors. End-of-life care in cardiovascular disease. London: Springer; 2015. p. 107–19. 6. Mentzelopoulos SD, Slowther AM, Fritz Z, et  al. Ethical challenges in resuscitation. Intensive Care Med. 2018;44:703–16. 7. Strech D, Synofzik M, Marckmann G. How physicians allocate scarce resources at the bedside: a systematic review of qualitative studies. J Med Philos. 2008;33:80–99.

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8. Daya MR, Schmicker RH, Zive DM, et al. Out-of-hospital cardiac arrest survival improving over time: results from the resuscitation outcomes consortium (ROC). Resuscitation. 2015;91:108–15. 9. Gräsner JT, Lefering R, Koster RW, et al. EuReCa ONE-27 nations, ONE Europe, ONE registry: a prospective one month analysis of out-of-hospital cardiac arrest outcomes in 27 countries in Europe. Resuscitation. 2016;105:188–95. 10. Mentzelopoulos SD, Bossaert L, Raffay V, et  al. A survey of key opinion leaders on ethical resuscitation practices in 31 European countries. Resuscitation. 2016;100:11–7. 11. Sandroni C, D’Arrigo S, Nolan J. Prognostication after cardiac arrest. Crit Care. 2018;22:1–9. 12. Andrew E, Mercier E, Nehme Z, et al. Long-term functional recovery and health-related quality of life of elderly out-of-hospital cardiac arrest survivors. Resuscitation. 2018;126:118–24. 13. Girotra S, Nallamothu BK, Spertus JA, et al. Trends in survival after in-hospital cardiac arrest. N Engl J Med. 2012;367:1912–32. 14. Anthi A, Tzelepis GE, Alivizatos P, et  al. Unexpected cardiac arrest after cardiac surgery: incidence, predisposing causes, and outcome of open chest cardiopulmonary resuscitation. Chest. 1998;113:15–9. 15. Yi HJ, Kim YS, Ko Y, et  al. Factors associated with survival and neurological outcome after cardiopulmonary resuscitation of neurosurgical intensive care unit patients. Neurosurgery. 2006;59:838–46. 16. Skrifvars MB, Varghese B, Parr MJ. Survival and outcome prediction using the apache III and the out-of-hospital cardiac arrest (OHCA) score in patients treated in the intensive care unit (ICU) following out-of-hospital, in-hospital or ICU cardiac arrest. Resuscitation. 2012;83:728–33. 17. Chang SH, Huang CH, Shih CL, et al. Who survives cardiac arrest in the intensive care units? J Crit Care. 2009;24:408–14. 18. Tian J, Kaufman DA, Zarich S, et al. Outcomes of critically ill patients who received cardiopulmonary resuscitation. Am J Respir Crit Care Med. 2010;182:501–6. 19. Enohumah KO, Moerer O, Kirmse C, et al. Outcome of cardiopulmonary resuscitation in intensive care units in a university hospital. Resuscitation. 2006;71:161–70. 20. Lee HK, Lee H, No JM, et al. Factors influencing outcome in patients with cardiac arrest in the ICU. Acta Anaesthesiol Scand. 2013;57:784–92. 21. Nolan JP, Sandroni C, Böttiger BW, et al. European resuscitation council and European Society of Intensive Care Medicine guidelines 2021: post-resuscitation care. Intensive Care Med. 2021;47:369–421. 22. Daviaud F, Grimaldi D, Dechartres A, et  al. Timing and causes of death in septic shock. Ann Intensive Care. 2015;5:16. 23. Driessen RGH, Heijnen NFL, Hulsewe RPMG, et  al. Early ICU-mortality in sepsis–causes, influencing factors and variability in clinical judgement: a retrospective cohort study. Infect Dis (Lond). 2021;53:61–8. 24. Mentzelopoulos SD, Couper K, Van De Voorde P, et al. European resuscitation council guidelines 2021: ethics of resuscitation and end of life decisions introduction and scope. Resuscitation. 2021;161:408–32. 25. Gazelle G. The slow code—should anyone rush to its defense? N Engl J Med. 1998;338:467–9. 26. DeKeyser GF, Sharfi R, Kaufman N, et  al. Perceptions of slow codes by nurses working on internal medicine wards. Nurs Ethics. 2019;26:1734–43. 27. Einav S, Rubinow A, Avidan A, et al. General medicine practitioners’ attitudes towards “do not attempt resuscitation” orders. Resuscitation. 2004;62:181–7. 28. Tomlinson T, Brody H. Futility and the ethics of resuscitation. JAMA. 1990;264:1276. 29. Blackhall LJ. Must we always use CPR? N Engl J Med. 1987;317:1281–5. 30. Beck K, Vincent A, Cam H, et al. Medical futility regarding cardiopulmonary resuscitation in in-­ hospital cardiac arrests of adult patients: a systematic review and meta-analysis. Resuscitation. 2022;172:181–93. 31. Luce JM.  End-of-life decision making in the intensive care unit. Am J Respir Crit Care Med. 2010;182:6–11. 32. Godfrey G, Hilton A, Bellomo R. To treat or not to treat. Curr Opin Crit Care. 2013;19:624–9. 33. Flannery L, Ramjan LM, Peters K. End-of-life decisions in the intensive care unit (ICU)–exploring the experiences of ICU nurses and doctors–a critical literature review. Aust Crit Care. 2016;29:97–103.

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34. Coleman AME.  Physician attitudes toward advanced directives: a literature review of variables impacting on physicians attitude toward advance directives. Am J Hosp Palliat Care. 2013;30:696– 706. 35. Higginson IJ. Doctors should not discuss resuscitation with terminally ill patients: against. BMJ. 2003;327:615–6. 36. Kerckhoffs MC, Kant M, van Delden JJM, et  al. Selecting and evaluating decision-making strategies in the intensive care unit: a systematic review. J Crit Care. 2019;51:39–45. 37. Perkins GD, Griffiths F, Slowther AM, et  al. Do-not-attempt-cardiopulmonary-resuscitation decisions: an evidence synthesis. In: Health services and delivery research, vol. 4. Southampton (UK): NIHR Journals Library; 2016. p. 1–154. 38. King D, Schockett E, Rizvi G, et al. The growth of palliative practice and end of life care in an academic teaching intensive care unit. J Intensive Care Med. 2022;37:1397–402. 39. Field RA, Fritz Z, Baker A, et al. Systematic review of interventions to improve appropriate use and outcomes associated with do-not-attempt-cardiopulmonary-resuscitation decisions. Resuscitation. 2014;85:1418–31. 40. Ebell MH, Jang W, Shen Y, et  al. Development and validation of the good outcome following attempted resuscitation (GO-FAR) score to predict neurologically intact survival after in-hospital cardiopulmonary resuscitation. JAMA Intern Med. 2013;173:1872–8. 41. Mockford C, Fritz Z, George R, et al. Do not attempt cardiopulmonary resuscitation (DNACPR) orders: a systematic review of the barriers and facilitators of decision-making and implementation. Resuscitation. 2015;88:99–113. 42. May C, Myall M, Lund S, et  al. Managing patient preferences and clinical responses in acute pathophysiological deterioration: what do clinicians think treatment escalation plans do? Soc Sci Med. 2020;258:113143. 43. European Resuscitation Council. Part 2: ethical aspects of CPR and ECC. European Resuscitation Council. Resuscitation. 2000;46:17–27. 44. Kramer DB, Lo B, Dickert NW. CPR in the Covid-19 era—an ethical framework. N Engl J Med. 2020;383:e6. 45. White DB, Lo B.  Mitigating inequities and saving lives with ICU triage during the COVID-19 pandemic. Am J Respir Crit Care Med. 2021;203:287–95. 46. Marckmann G, Neitzke G, Schildmann J, et  al. Decisions on the allocation of intensive care resources in the context of the COVID-19 pandemic: clinical and ethical recommendations of DIVI, DGINA, DGAI, DGIIN, DGNI, DGP, DGP and AEM. Med Klin Intensivmed Notfmed. 2020;115:115–22. 47. Chen YS, Lin JW, Yu HY, et al. Cardiopulmonary resuscitation with assisted extracorporeal life-­ support versus conventional cardiopulmonary resuscitation in adults with in-hospital cardiac arrest: an observational study and propensity analysis. Lancet. 2008;372:554–61. 48. Twohig CJ, Singer B, Grier G, et  al. A systematic literature review and meta-analysis of the effectiveness of extracorporeal-CPR versus conventional-CPR for adult patients in cardiac arrest. J Intensive Care Soc. 2019;20:347–57. 49. Abrams D, Curtis JR, Prager KM, et  al. Ethical considerations for mechanical support. Anesthesiol Clin. 2019;37:661–73. 50. Piscitello GM, Bermea RS, Stokes JW, et  al. Clinician ethical perspectives on extracorporeal membrane oxygenation in practice. Am J Hosp Palliat Care. 2022;6:659–66. 51. Bein T, Brodie D.  Understanding ethical decisions for patients on extracorporeal life support. Intensive Care Med. 2017;43:1510–1. 52. Adamowski K, Dickinson G, Weitzman B, et  al. Sudden unexpected death in the emergency department: caring for the survivors. CMAJ. 1993;149:1445–51. 53. Baile WF, Buckman R, Lenzi R, et  al. SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5:302–11.

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Palliative Care in Intensive Care Units Ann L. Jennerich, Victoria Metaxa, Kateřina Rusinová, and Jozef Kesecioglu Contents 10.1

Introduction – 108

10.2

The Role of Palliative Care in the ICU – 109

10.2.1 10.2.2 10.2.3 10.2.4

 ommunication – 109 C Emotional, Psychological, and Spiritual Support – 109 Symptom Management – 110 Involving Palliative Care Specialists in the ICU – 111

10.3

I mplementing Palliative Care Principles in the ICU – 111

10.4

Barriers to Palliative Care in the ICU – 112

10.5

Future Directions – 114 References – 116

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Michalsen et al. (eds.), Ethics in Intensive Care Medicine, Lessons from the ICU, https://doi.org/10.1007/978-3-031-29390-0_10

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nnLearning Objectives 55 55 55 55 55 55

10.1 

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Understand the principles of palliative care medicine Note the difference between primary and specialty palliative care Explore how palliative care can attenuate conflict Review practical tips for integrating palliative care Consider barriers to palliative care delivery Examine future directions for enhancing palliative care in the ICU

Introduction

To understand the role of palliative care in the intensive care unit (ICU), one must first appreciate its defining features. Palliative care is provided to patients and family members of patients with serious, life-limiting illness. This type of care entails a holistic approach to the patient, incorporating high-quality communication and management of physical symptoms, psychological distress, and spiritual needs with a goal of improving patients’ quality of life [1, 2]. Palliative care also supports shared decision-making based on patients’ values, goals of care, and treatment preferences [3]. For many critically ill patients, palliative care is provided in the final days to weeks of life, in which case it may be referred to as endof-life care. While palliative care includes end-of-life care, it is not relegated to such a finite period and can be offered at any point during a patient’s life-limiting illness. Palliative care can be provided by many different members of the healthcare team, including physicians, nurses, social workers, and spiritual care providers. In many settings, there is a distinction between primary and specialty palliative care, sometimes referred to as integrative and consultative palliative care, respectively [4, 5]. Members of the ICU team may deliver primary palliative care, which entails basic symptom management as well as communication about patients’ values, goals of care, and treatment preferences. Primary palliative care can also address the spiritual and emotional needs of patients and their family members. Specialty palliative care is provided by clinicians who have received additional training in palliative care medicine and in many cases have completed additional certification exams. In addition to the basic care provided by members of the ICU team, specialists in palliative care offer expertise in the management of complex symptoms and psycho-social situations and may also address complicated bereavement. Given the morbidity and mortality faced by critically ill patients, decisions pertaining to life and death are common in the ICU.  For this reason, ICU clinicians often face important ethical challenges. Because many of these matters are related to the very processes which palliative care is designed to address, palliative care is a natural complement to intensive care medicine, where it can help patients, their family members, and the healthcare team navigate these challenging situations. In this chapter, we discuss the critical role of palliative care as it pertains to ethical dilemmas in the ICU.

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10.2 

The Role of Palliative Care in the ICU

In the ICU, high-stakes decisions are made daily, and the basic principles of medical ethics are often at the forefront of critical care. The principles of non-maleficence, beneficence, autonomy, and (distributive) justice are invoked in many of the most common ethical dilemmas in the ICU. Not infrequently, ethical principles compete with one another. For example, conflicts often arise at the intersection of beneficence and autonomy. Some of the most challenging situations are related to decision-­ making capacity, the withholding or withdrawal of life-sustaining interventions, non-beneficial treatment (or “disproportionate treatment”), and the pharmacologic management of symptoms, including pain and dyspnea. For patients with life-­ limiting illness, clinicians must address complex disease processes and physiology while also helping patients and their family members navigate difficult decisions about life and death. The skills necessary to do this are embodied in palliative care, and these skills can be used to help clinicians as they engage in shared decision-­ making with patients and family as well as the interdisciplinary team. 10.2.1 

Communication

Many ethical dilemmas arise in the absence of high-quality communication between patients, their family members, and the healthcare team. Often, hospitalized patients will not have had conversations about their prognosis or their values, goals of care, or treatment preferences prior to ICU admission [6, 7]. The ability to effectively engage in difficult conversations, especially those pertaining to the end of life, is a core component of palliative care, and all clinicians providing care to critically ill patients should be well versed in communication about serious illness. A wide variety of training guides and communication tools have been developed to facilitate the delivery of palliative care in the ICU, and many of these are summarized in clinical practice guidelines [8]. Some of the key features of high-quality communication include the exchange of information in a timely fashion and an understandable way (e.g., avoiding medical jargon); expressions of empathy and a concerted effort to build rapport; taking time to listen and answer questions, avoiding prolonged periods of time where the clinician is doing most of the talking; and verifying that shared information has been understood. Communicators who exhibit these qualities are often able to accomplish one of the most important tasks of ICU clinicians, which is to elicit and explore the values of patients and their family members. Using these values, clinicians can then help define goals of care and establish treatment preferences which match the needs of patients. 10.2.2 

Emotional, Psychological, and Spiritual Support

Facing difficult decisions in the ICU, patients, and family members may experience significant psychological distress [9], and such distress may contribute to conflict when ethical dilemmas arise. A core tenet of palliative care is the ability to acknowledge the emotions of patients and family members and to be able to explore those

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feelings as they relate to the care of the patient. Feelings of anger, sadness, and disbelief are common when facing serious illness. By acknowledging these emotions and responding with empathy, clinicians can better understand the perspectives of patients and their family members. Moreover, addressing emotions can help prevent conflict and provide clinicians with insights into the supportive needs of patients and family members and can help clinicians identify when patients and their family members might benefit from spiritual care provided by clergy or hospital chaplains. In all cases, the support provided by clinicians should be tailored to the specific patient and family, being mindful of unique cultural needs. The provision of culturally competent care may be challenging, but is a necessary skill for critical care clinicians who must address a wide variety of cultural and religious beliefs in the ICU [10]. Finally, emotional distress in the ICU is not confined to patients and their family members. When decisions about patient care generate an ethical dilemma for the healthcare team, providers may feel moral distress, which occurs when providers feel constrained from taking an action they feel is ethically appropriate [11]. The same palliative care approach to acknowledging and exploring emotions may be applied to the interdisciplinary team, to support clinicians as they are confronted with difficult decisions [12]. 10.2.3 

10

Symptom Management

Critically ill patients experience a variety of symptoms related to underlying disease processes. Pain and dyspnea are often the most distressing, and in many cases these symptoms are inadequately treated [13, 14]. Regardless of a patient’s disease stage, whether they have been newly diagnosed with a serious illness with an expectation of months to years of life remaining, or they only have days to live, the application of palliative care principles to the management of symptoms is appropriate [15–17]. These principles focus on relief of symptoms using both pharmacologic and non-­pharmacologic interventions with special attention to the assessment of symptoms for those patients who are no longer communicative; delivery of sedation and analgesia to those undergoing withdrawal of mechanical ventilation; and support of family members witnessing the dying process. Regarding pharmacologic interventions, a common ethical concern is the potential for hastening of death with the administration of sedation and analgesia. There is little evidence to support the notion that death is expediated by these interventions, particularly when care is individualized and medications are administered properly [17]. Moreover, the principle of double effect, which relates to the intentions of the prescribing provider, forms a rationale for the ethical administration of sedatives and analgesia. Per this principle, although the provision of sedatives and analgesic may result in accelerated death when directed at the relief of pain and suffering, if the intention remains the management of those symptoms, and not the hastening of death, it is morally acceptable to administer those medications [18]. Even with this knowledge, clinicians may find it challenging to balance “too much” versus “too little” medication administration for patients with life-limiting illness. This may be especially true for patients at the end of their lives when there is a desire by patients and their family members to preserve as much wakefulness as possible. In these situations, clinicians may experience moral distress if they feel a patient is suffer-

111 Palliative Care in Intensive Care Units

ing. These situations emphasize the importance of ­communication in developing a plan for symptom management, so that an acceptable compromise can be reached for all involved. 10.2.4 

Involving Palliative Care Specialists in the ICU

Although high-quality communication from the ICU team may help prevent the development of ethical quandaries, challenging situations will still arise. This is in part due to the nature of care provided in the ICU and the types of decisions which must be made on a frequent basis. In situations where additional support is needed, and where such specialists exist, specialty palliative care providers can be consulted. Palliative care specialists are adept at addressing social, psychological, and spiritual needs of patients and their family members and can also support the healthcare team’s efforts to de-escalate disagreements about treatment. They can also help mediate conflict between members of the interdisciplinary team [12, 19, 20]. Lastly, specialists offer expertise in the selection and administration of opioid and non-opioid pharmacologic options for the management of symptoms. Input from specialists may be particularly valuable for patients transitioning out of the ICU, as recommendations made in the ICU can be carried forward in the inpatient setting where clinicians may not be as familiar with medications provided in the ICU environment [15].

10.3 

Implementing Palliative Care Principles in the ICU

Based on a combination of existing data and the input of experts from around the world, medical societies have emphasized the importance of palliative care in the ICU, particularly as it pertains to improving patient- and family-centered outcomes [8, 17]. Additional work has been done to achieve international consensus on common end-of-life care issues occurring in the ICU [21]. In addition to general recommendations regarding both primary and specialty palliative care, guidelines have been developed that identify palliative care consultants as critical members of the healthcare team when conflict arises regarding potentially inappropriate treatments [22]. Much research has been dedicated to developing and implementing strategies designed to promote palliative care in the ICU, with models of care focused on the primary ICU team, specialists in palliative care, or some combination of both [23, 24]. Interventions are heterogeneous, including those focused on improving communication with patients and their family members, educating members of the healthcare team about palliative and end-of-life care, or involving ethicists or palliative care specialists to facilitate care [24]. Different approaches to promoting palliative care in the ICU have been associated with improvement in a variety of patient- and family-­ centered outcomes, including shorter length of ICU stay, shorter duration of mechanical ventilation, and less use of non-beneficial treatments [4, 8, 25, 26]. In addition, it has been shown in some settings that involvement of specialty palliative care may reduce psychological distress for family members of critically ill patients and reduce conflict over goals of care [4]. Because studied interventions vary widely

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in their components and application, it has been challenging to identify which approach sustains the greatest improvement in palliative care uptake in the ICU and which has the most robust impact on patient- and family-centered outcomes. For this reason, one specific intervention cannot be recommended over another. However, there are some fundamental aspects of care for all patients with life-limiting illness which ICU clinicians can apply. One key theme related to the integration of palliative care in the ICU is standardization of care using checklists and protocols [27]. By making some aspects of palliative care in the ICU, a part of the daily ICU routine for patients with life-limiting illness, such as a palliative care needs assessment during rounds, clinicians may be more inclined to address issues before they become sources of frustration for patients and their family members. While checklists or other prompts allow clinicians in the ICU to be proactive, palliative care order sets mitigate the potential for undesired variability in care. Order sets are generally designed to facilitate transitions to comfort measures only, including withdrawal of mechanical ventilation, and should be grounded in existing clinical practice guidelines [8, 15, 28]. Another important aspect of care includes the importance of timeliness of conversations [27]. Delaying conversations with patients and their family members about critical topics, like prognosis, expected recovery of function, and overall quality of life, will prevent many individuals from receiving treatment that aligns with their values. Basic palliative care in the ICU should involve meetings with patients, if they are able, and their family members within the first 72 h of an ICU stay, to explore the patient’s medical history, gauge knowledge about the clinical condition, begin to understand what matters most to them, and help family acting as surrogate decision-­ makers in the context of the patient’s known values [27, 29]. In many situations, a definitive prognosis may not be appropriate so early in a patient’s course; however, having conversations within the first several days of ICU admission will at least help the ICU team build rapport with family members and lay the groundwork for future conversations. In addition to efforts to promote primary palliative care in the ICU, there has been a strong interest in evaluating methods to optimally utilize specialty palliative care. One aspect of specialty palliative care involvement relates to triggers for consultation and determining which patients should be prioritized [30–34]. Patients in the ICU are seriously ill by definition, but not all of them need to be seen by palliative care specialists. Much effort has been dedicated to determining which patients may benefit most, with the following factors being considered prompts for consultation: patient age; severity of underlying diagnoses; and resource utilization, such as prolonged mechanical ventilation or hospital length of stay [4, 30–33]. In some models, specialty palliative care providers have been integrated into the daily routine of the ICU team [35].

10.4 

Barriers to Palliative Care in the ICU

Despite evidence supporting the benefits of palliative care in the ICU, a variety of barriers impede widespread adoption of palliative care principles and involvement of specialty palliative care providers in the care of critically ill patients and their

113 Palliative Care in Intensive Care Units

family members [36–38]. One basic impediment is the lack of robust education related to palliative care, for nurses and physicians alike, leaving many clinicians feeling ill-­equipped to provide primary palliative care [39–41]. In the absence of the skills necessary to adequately communicate with patients and their family members about serious illness throughout the patient’s ICU stay, the potential to prevent conflict and deliver goal-concordant care is diminished and delivery of high-quality end-of-life care is hindered. Acknowledging these deficiencies in palliative care education and how the absence of palliative care skills affects those with serious illness, a wide variety of interventions have been developed to enhance training in this regard [42–45]. To address common ethical dilemmas in the ICU, all providers working with critically ill patients and their family members should receive adequate training in the discussion of serious illness, including an understanding of how to assess patients’ values, goals of care and treatment preferences, management of symptoms, and provision of emotional and spiritual support in the ICU. This training should also include a basic understanding of cultural factors which influence shared decision-­making. The goal of early training is paramount, but it should be reinforced that life-long learning is essential and maintenance and improvement of skills should be the norm for all those providing care to critically ill patients and their family members. Another barrier affecting the utilization of palliative care in the ICU relates to lack of access to palliative care services across the world. This includes limited resources for primary palliative care [46] as well as a limited workforce of specialty palliative care providers [47]. There is significant need for palliative care, specifically in regions where healthcare resources are already limited. This includes low- and middle-income countries, but also rural communities in high-income countries. One approach to enhancing delivery of palliative care has been to focus on building a primary palliative care skillset in these regions. However, palliative care specialists provide additional expertise and as such, the goal of enhancing the number of specialty palliative care providers is still critical. Finally, variability in palliative care delivery remains a significant barrier to widespread implementation [48–51]. Differences may occur at the local level, including differences in utilization of palliative care within a single hospital, based on factors related to the type of ICU and associated providers, or differences that are regional in scale and relate to larger, governing principles for regions and nations. Some differences are related to deeply ingrained religious or cultural beliefs about death and dying and the ethical concerns related to end-of-life care. For some, the reluctance to embrace palliative care comes from a perception of palliative care as akin to “giving up” or “losing hope.” Years of work have been poured into changing this perception, among patients, family members, and healthcare providers, to promote the understanding that palliative care is a proactive way of addressing the needs of patients and their family members. By having candid conversations about serious illness, healthcare teams are then able to provide care focused on what matters most to patients, whether that care is focused primarily on longevity or on achieving a certain quality of life with an understanding that quantity of life may be less. Regional differences in utilization of palliative care may reflect existing legislation or variability in the legality of specific aspects of end-of-life care in the ICU. For instance, there is regional disagreement on the ethical equivalence of withholding versus withdrawal of life-sustaining therapies [52], and this may influence the willingness of clinicians

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to discuss or implement these elements of end-of-life care. Certainly, it is important to respect cultural and religious differences in beliefs about dying and death. However, even in instances where cultural differences affect the approach to palliative care in the ICU, the importance of high-quality communication, emotional and spiritual support, and management of symptoms remains constant.

10.5 

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Future Directions

The importance of palliative care in the ICU cannot be overstated. The success of its implementation depends on several factors, including training of the workforce, education for patients and their family members, and expansion of our understanding of palliative care utilization around the world. Training in palliative care can come in a variety of formats, but an effective approach to educating clinicians in palliative care is likely multifactorial. Integration of the principles of palliative care in medical school curriculum is critical, with opportunities for continued medical education for the duration of a clinician’s career. Formal training can come in many forms, including didactics, interactive and simulation work, as well as practical experience under the guidance of those with expertise in the field. For those wishing to provide specialty palliative care, formal training programs or fellowships already exist and supporting trainees in this career path may improve the availability of specialists to serve in the ICU. Training in palliative care should be accompanied by an understanding of when consultation of specialists is indicated. Currently, there is no global consensus on indications for the involvement of specialty palliative care in the ICU, but as the role of specialty palliative care evolves, it will be crucial for ICU clinicians to be involved with decision-making about what skills should be considered core competencies in ICU care and which should be the purview of specialists. Education of patients and family members about the nature of palliative care and the purpose it serves will require more than individual effort on the part of clinicians. Organizations dedicated to promoting the role of palliative care in serious illness are invaluable resources for patients, family members, and clinicians alike. Patients and their family members should feel comfortable discussing palliative care with their healthcare providers and advocating for inclusion of specialists. To do this, palliative care must become a familiar term, and not one only associated with the end of a patient’s life. Finally, over the last several decades, there has been considerable improvement in our understanding of palliative care practices and utilization because of the research efforts of countless scientists. By examining palliative care in the ICU using high-­quality research, we have learned a great deal about how best to support patients and their family members. However, much of the existing research in palliative and end-­of-­life care in the ICU lacks a global perspective [24]. There is a critical need for studies from non-Western parts of the globe, so that diverse perspectives on palliative care can be understood and improvements made on an international level.

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Take-Home Messages 55 Palliative care is provided to patients and family members of patients with serious, life-limiting illness, with a goal of improving quality of life. 55 This type of care involves a holistic approach to the patient, incorporating high-­ quality communication and management of physical symptoms, psychological ­distress, and spiritual needs. 55 All clinicians caring for seriously ill patients should possess basic palliative care skills. 55 Ethical dilemmas are common in the ICU, but challenging situations can often be prevented by the application of palliative care principles. 55 High-quality communication is a necessary component of palliative care and should include exploration of patient’s values and preferences. 55 Emotional, psychological, and spiritual support are essential to attenuate the distress experienced by patients, family members, and clinicians in the ICU. 55 Symptom management may be challenging in the ICU, especially for those at the end of life but adhering to palliative care principles can help achieve the respective goals. 55 Implementation of palliative care in the ICU is important, but no single intervention will serve for every ICU environment. 55 Core aspects of palliative care that should be implemented in all ICUs include timely communication, standardized protocols to address palliative care needs, and consultation of specialists when indicated. 55 Lack of access to palliative care is pervasive and even when available, variability in utilization of palliative care persists. 55 To improve palliative care delivery in the ICU, it will require training of the workforce, education for patients and their family members, and expansion of our understanding of palliative care utilization around the world.

Summary All clinicians caring for seriously ill patients should possess basic palliative care skills, at a minimum. The core components of palliative care, including high-quality communication, support for emotional, psychological, and spiritual needs, and management of physical symptoms, all have essential roles in the ICU. In situations where additional support is needed, and where such specialists exist, specialty palliative care providers can be consulted. Palliative care specialists are adept at addressing social, psychological, and spiritual needs of patients and their family members and can also support the healthcare team. Implementation of palliative care principles in the ICU can be done using a variety of approaches, including standardization of care using checklists and protocols, development of a consistent approach to early communication with patients, if they are able, and their family members, and optimizing the involvement of palliative care specialists. Inadequate education and training in palliative care remain significant barriers to its successful implementation in the ICU, and efforts to address these barriers must include a global perspective.

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1. Chatterjee K, Goyal A, Kakkera K, et al. National trends (2009–2013) for palliative care utilization for patients receiving prolonged mechanical ventilation. Crit Care Med. 2018;46:1230–7. 2. Alch CK, Wright CL, Collier KM, et al. Barriers to addressing the spiritual and religious needs of patients and families in the intensive care unit: a qualitative study of critical care physicians. Am J Hosp Palliat Care. 2021;38:1120–5. 3. Kerckhoffs MC, Kant M, van Delden JJM, et al. Selecting and evaluating decision-making strategies in the intensive care unit: a systematic review. J Crit Care. 2019;51:39–45. 4. Nelson JE, Bassett R, Boss RD, et al. Models for structuring a clinical initiative to enhance palliative care in the intensive care unit: a report from the IPAL-ICU project (improving palliative care in the ICU). Crit Care Med. 2010;38:1765–72. 5. Hua M, Wunsch H. Integrating palliative care in the ICU. Curr Opin Crit Care. 2014;20:673–80. 6. Anderson WG, Chase R, Pantilat SZ, et al. Code status discussions between attending hospitalist physicians and medical patients at hospital admission. J Gen Intern Med. 2011;26:359–66. 7. Heyland DK, Barwich D, Pichora D, et al. Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA Intern Med. 2013;173:778–87. 8. Davidson JE, Aslakson RA, Long AC, et al. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med. 2017;45:103–28. 9. Long AC, Kross EK, Davydow DS, et al. Posttraumatic stress disorder among survivors of critical illness: creation of a conceptual model addressing identification, prevention, and management. Intensive Care Med. 2014;40:820–9. 10. Fassier T, Lautrette A, Ciroldi M, et al. Care at the end of life in critically ill patients: the European perspective. Curr Opin Crit Care. 2005;11:616–23. 11. Kok N, Van Gurp J, van der Hoeven JG, et al. Complex interplay between moral distress and other risk factors of burnout in ICU professionals: findings from a cross-sectional survey study. BMJ Qual Saf. 2021. [e-pub ahead of print]. doi:https://doi.org/10.1136/bmjqs-­2020-­012239. 12. Michalsen A, Long AC, DeKeyser GF, et al. Interprofessional shared decision-making in the ICU: a systematic review and recommendations from an expert panel. Crit Care Med. 2019;47:1258–66. 13. Gentzler ER, Derry H, Ouyang DJ, et al. Underdetection and undertreatment of dyspnea in critically ill patients. Am J Respir Crit Care Med. 2019;199:1377–84. 14. Puntillo K, Nelson JE, Weissman D, et al. Palliative care in the ICU: relief of pain, dyspnea, and thirst–a report from the IPAL-ICU advisory board. Intensive Care Med. 2014;40:235–48. 15. Hawryluck LA, Harvey WR, Lemieux-Charles L, et  al. Consensus guidelines on analgesia and sedation in dying intensive care unit patients. BMC Med Ethics. 2002;3:E3. 16. Downar J, Delaney JW, Hawryluck L, et al. Guidelines for the withdrawal of life-sustaining measures. Intensive Care Med. 2016;42:1003–17. 17. Lanken PN, Terry PB, Delisser HM, et al. An official American Thoracic Society clinical policy statement: palliative care for patients with respiratory diseases and critical illnesses. Am J Respir Crit Care Med. 2008;177:912–27. 18. Truog RD, Campbell ML, Curtis JR, et al. Recommendations for end-of-life care in the intensive care unit: a consensus statement by the American college [corrected] of critical care medicine. Crit Care Med. 2008;36:953–63. 19. Fassier T, Azoulay E. Conflicts and communication gaps in the intensive care unit. Curr Opin Crit Care. 2010;16:654–65. 20. Azoulay E, Timsit JF, Sprung CL, et al. Prevalence and factors of intensive care unit conflicts: the conflicus study. Am J Respir Crit Care Med. 2009;180:853–60. 21. Sprung CL, Truog RD, Curtis JR, et al. Seeking worldwide professional consensus on the principles of end-of-life care for the critically ill. The consensus for worldwide end-of-life practice for patients in intensive care units (WELPICUS) study. Am J Respir Crit Care Med. 2014;190:855–66. 22. Bosslet GT, Pope TM, Rubenfeld GD, et al. An official ATS/AACN/ACCP/ESICM/SCCM policy statement: responding to requests for potentially inappropriate treatments in intensive care units. Am J Respir Crit Care Med. 2015;191:1318–30. 23. Ernecoff NC, Check D, Bannon M, et al. Comparing specialty and primary palliative care interventions: analysis of a systematic review. J Palliat Med. 2020;23:389–96. 24. Metaxa V, Anagnostou D, Vlachos S, et  al. Palliative care interventions in intensive care unit patients. Intensive Care Med. 2021;47:1415–25.

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25. Khandelwal N, Kross EK, Engelberg RA, et al. Estimating the effect of palliative care interventions and advance care planning on ICU utilization: a systematic review. Crit Care Med. 2015;43:1102–11. 26. Ma J, Chi S, Buettner B, et  al. Early palliative care consultation in the medical ICU: a cluster randomized crossover trial. Crit Care Med. 2019;47:1707–15. 27. Curtis JR, White DB.  Practical guidance for evidence-based ICU family conferences. Chest. 2008;134:835–43. 28. Durán-Crane A, Laserna A, López-Olivo MA, et al. Clinical practice guidelines and consensus statements about pain management in critically ill end-of-life patients: a systematic review. Crit Care Med. 2019;47:1619–26. 29. Kerckhoffs MC, Senekal J, van Dijk D, et  al. Framework to support the process of decision-­ making on life-sustaining treatments in the ICU: results of a Delphi study. Crit Care Med. 2020;48:645–53. 30. Hua MS, Ma X, Li G, et al. Derivation of data-driven triggers for palliative care consultation in critically ill patients. J Crit Care. 2018;46:79–83. 31. Hua MS, Li G, Blinderman CD, et al. Estimates of the need for palliative care consultation across United States intensive care units using a trigger-based model. Am J Respir Crit Care Med. 2014;189:428–36. 32. Hope AA, Enilari OM, Chuang E, et al. Prehospital frailty and screening criteria for palliative care services in critically ill older adults: an observational cohort study. J Palliat Med. 2021;24: 252–6. 33. Creutzfeldt CJ, Wunsch H, Curtis JR, et al. Prevalence and outcomes of patients meeting palliative care consultation triggers in neurological intensive care units. Neurocrit Care. 2015;23:14–21. 34. Nelson JE, Curtis JR, Mulkerin C, et al. Choosing and using screening criteria for palliative care consultation in the ICU: a report from the improving palliative care in the ICU (IPAL-ICU) advisory board. Crit Care Med. 2013;41:2318–27. 35. O'Mahony S, McHenry J, Blank AE, et al. Preliminary report of the integration of a palliative care team into an intensive care unit. Palliat Med. 2010;24:154–65. 36. Nelson JE, Azoulay E, Curtis JR, et al. Palliative care in the ICU. J Palliat Med. 2012;15:168–74. 37. Aslakson RA, Curtis JR, Nelson JE. The changing role of palliative care in the ICU. Crit Care Med. 2014;42:2418–28. 38. Nelson JE. Identifying and overcoming the barriers to high-quality palliative care in the intensive care unit. Crit Care Med. 2006;34:S324–31. 39. Billings ME, Curtis JR, Engelberg RA. Medicine residents' self-perceived competence in end-of-­ life care. Acad Med. 2009;84:1533–9. 40. Billings ME, Engelberg R, Curtis JR, et al. Determinants of medical students' perceived preparation to perform end-of-life care, quality of end-of-life care education, and attitudes toward endof-­life care. J Palliat Med. 2010;13:319–26. 41. Kawaguchi S, Mirza R, Nissim R, et al. Internal medicine residents' beliefs, attitudes, and experiences relating to palliative care: a qualitative study. Am J Hosp Palliat Care. 2017;34:366–72. 42. Anderson WG, Puntillo K, Cimino J, et al. Palliative care professional development for critical care nurses: a multicenter program. Am J Crit Care. 2017;26:361–71. 43. Smith MB, Macieira TGR, Bumbach MD, et al. The use of simulation to teach nursing students and clinicians palliative care and end-of-life communication: a systematic review. Am J Hosp Palliat Care. 2018;35:1140–54. 44. Amen SS, Berndtson AE, Cain J, et  al. Communication and palliation in trauma critical care: impact of trainee education and mentorship. J Surg Res. 2021;266:236–44. 45. Bays AM, Engelberg RA, Back AL, et al. Interprofessional communication skills training for serious illness: evaluation of a small-group, simulated patient intervention. J Palliat Med. 2014;17: 159–66. 46. World Health Organisation. Quality health services and palliative care: practical approaches and resources to support policy, strategy and practice. Geneva: World Health Organization; 2021. p. 52. 47. Lupu D. Estimate of current hospice and palliative medicine physician workforce shortage. J Pain Symptom Manag. 2010;40:899–911. 48. DeCato TW, Engelberg RA, Downey L, et al. Hospital variation and temporal trends in palliative and end-of-life care in the ICU. Crit Care Med. 2013;41:1405–11.

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49. Kross EK, Engelberg RA, Downey L, et  al. Differences in end-of-life care in the ICU across patients cared for by medicine, surgery, neurology, and neurosurgery physicians. Chest. 2014;145:313–21. 50. Lee JD, Jennerich AL, Engelberg RA, et al. Type of intensive care unit matters: variations in palliative care for critically ill patients with chronic, life-limiting illness. J Palliat Med. 2021;24: 857–64. 51. Long AC, Brumback LC, Curtis JR, et al. Agreement with consensus statements on end-of-life care: a description of variability at the level of the provider, hospital, and country. Crit Care Med. 2019;47:1396–401. 52. Mark NM, Rayner SG, Lee NJ, et al. Global variability in withholding and withdrawal of life-­ sustaining treatment in the intensive care unit: a systematic review. Intensive Care Med. 2015;41(9):1572–85.

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Appropriateness of Care Contents Chapter 11 Ethical Climate and Proportionate Care – 121 Bo Van den Bulcke and Hanne Irene Jensen Chapter 12 Clinical Ethics and the Law – 131 Marjel van Dam, Jozef Kesesioglu, Gunnar Duttge, E. Wesley Ely, Charles L. Sprung, and Aimee B. Milliken Chapter 13 Distributive Justice: Ethics in Health Care Crises – 141 Kateřina Rusinová, Marco Vergano, Aimee B. Milliken, and Andrej Michalsen

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Ethical Climate and Proportionate Care Bo Van den Bulcke and Hanne Irene Jensen Contents 11.1

Introduction – 122

11.2

Disproportionate Care and Ethical Climate – 122

11.2.1

11.2.4

 ow Can “Ethical Decision-Making (EDM) Climate” H in the ICU Be Conceptualized and Measured? – 123 Does the Quality of the Ethical Climate in the ICU Improve the Identification of Patients Receiving Disproportionate Care and Have an Impact on Patient Outcomes? – 125 What Is the Relationship Between the Quality of the Ethical Climate in the ICU and Intent to Leave Their Jobs Among ICU Clinicians? – 126 The Importance of the Ethical Climate in Times of Crises – 127

11.3

Future Perspectives – 127

11.2.2

11.2.3

References – 128

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 A. Michalsen et al. (eds.), Ethics in Intensive Care Medicine, Lessons from the ICU, https://doi.org/10.1007/978-3-031-29390-0_11

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The first step in the evolution of ethics is a sense of solidarity with other human beings. Albert Schweitzer

nnLearning Objectives 55 This chapter will define disproportionate care and ethical decision-making climate. 55 This chapter will demonstrate the association between the ethical climate and disproportionate care and between the ethical climate and intent to leave. 55 This chapter will enable the reader to work toward a better ethical climate—and thereby improve the quality of the healthcare provided.

11.1 

11

Introduction

The initial goal of intensive care medicine is treating patients who were comparatively healthy prior to their admission and who are suffering from organ dysfunction(s) and/or life-threatening diseases with the goal of their full or at least partial recovery. However, over the last decades, there has been an increasing referral of patients with severe chronic underlying comorbidities or poor quality of life to intensive care units (ICUs), resulting in an increase in ICU admissions in the last month(s) of life [1]. Regularly, clinicians, patients, and families are challenged to decide whether life-­ sustaining therapies should be initiated, withheld, or withdrawn [2, 3]. Addressing ethical issues and resolving ethical dilemmas requires time, commitment, and collaboration. During this complex and often unanticipated process, an interprofessional team of clinicians acting together in a coordinated way is crucial to fully appreciate the patient’s context. The whole team should work together toward a holistic therapy while also setting a common goal and sharing the decision-making within the team [4, 5] and with the patient and family wherever possible [6]. However, a recent study showed that 73% of European and 87% of critical care physicians in California, respectively, stated that they frequently admitted patients with low expectations for recovery [7, 8], indicating that this complex process is not being handled well. Non-beneficial treatments are not only associated with reduced quality of life near end-of-life processes and lower perceptions of quality of care by patients and families, but also with higher costs for hospitals [6–8]. Moreover, the daily ethical challenge to consider whether life-sustaining therapy is perceived as appropriate or disproportionate (too much or not enough) frequently leads to clinicians’ moral distress [9–13].

11.2 

Disproportionate Care and Ethical Climate

Within ICUs, decision-making as to ethical issues is a daily task that can be a huge burden for patients, families, and clinicians. Therefore, patient care in ICUs needs a team approach that encourages a climate and culture of effective interprofessional collaboration and communication. So far, there are minimal empirical ICU data to define a performance index or a specific theme to focus on for improvement by means of interventions. However, studies that have focused on recommendations for improvement have pointed out the need for ethical reflection in ICU teams [7, 9].

123 Ethical Climate and Proportionate Care

Unifying nurses’ and physicians’ points of view regarding moral distress and ethical climate is necessary to encompass an interprofessional team perspective (see 7 Chap. 4). Increased use of advanced life-sustaining measures in patients with poor long-­ term expectations secondary to more chronic organ dysfunctions, comorbidities, and/or a poor quality of life has become a concerning trend over the last decades. This can lead to disproportionate or inappropriate care in the ICU [14–16]. Disproportionate care has been defined as “care which is perceived by clinicians as disproportionate (‘too much’ or ‘too little’) in relation to the expected prognosis of the patient in terms of expected survival or quality of life or to the patients’ or relatives’ wishes” [14, 15]. Of note is that the terminology of “potentially inappropriate care” has been embraced by societies in the US as an alternative to the now discarded, value-laden term “futile care”, but for the purpose of this chapter, the term “disproportionate” will be utilized. As described above, disproportionate care has negative consequences for patients, families, and clinicians as well as regarding healthcare expenditures [6–13, 17, 18]. The ethical climate, defined as “a set of shared perceptions of procedures and policies, both codified and informal, which shape expectations for ethical behavior within an organization,” should be recognized as an important factor that is associated with the level of moral distress [5–7, 19].  

11.2.1 

 ow Can “Ethical Decision-Making (EDM) Climate” H in the ICU Be Conceptualized and Measured?

While nurses have recognized the importance of ethical climate and moral distress for decades, awareness of physicians’ moral distress is a newer area of inquiry, perhaps reflecting the growing tensions that have arisen because of shifts in societal expectations surrounding autonomy and the decline of physicians’ decisional authority [7, 9–14]. Studies have shown that institutional cultures surrounding advanced care planning contribute to a remarkable variation regarding end-of-life care in ICUs [20, 21]. Others have found considerable variation in the use of do-not-resuscitate (DNR) orders and withdrawal of life-sustaining therapies, even after accounting for variability in patient characteristics [22, 23]. In a recent qualitative study, Dzeng and colleagues found that an institution’s ethical priority influenced the way physicians conceptualized autonomy and beneficence, which consequently influenced communication practices surrounding resuscitation decision-making near the end of life [11]. This study also revealed the importance of systemic factors, such as institutional cultural norms, that contributed to (potentially) inappropriate care at the end of life in hospitals in the United States. Interventions may be more effective if they target the attitudes, beliefs, and culture that underlie communication practices rather than only the practices themselves. In the European and US DISPROPRICUS study (Disproportionate care in ICUS), the theoretical framework was considered the heart of the process on how to evaluate clinicians’ perceptions of EDM [14]. The study tried to identify the main factors involved in making ethical decisions in the interprofessional team by using perceptions of nurses and physicians in relation to this concept. Previous research has focused on dispersed concepts concerning distress and ethical issues and often

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focused on nurses’ perspective only [10–13]. In the DISPROPRICUS study, a careful modified Delphi approach was used to develop a survey with strong face validity: Then, state-of-the-art exploratory and confirmatory factor analyses were used to determine the structure of the ethical decision-making climate concept. The tool was subsequently validated in 68 ICUs in 13 European countries and the USA, by almost 3000 clinicians. The ethical decision-making domains included within the ethical decision-making climate questionnaire (EDMCQ) are interdisciplinary collaboration and communication, leadership by physicians, and ethical climate. Moral distress can manifest in many ways. The EDMCQ specifically identifies certain aspects of ethical climate as prominent among the different factors that relate to moral distress with respect to decision-making in the ICU (. Fig. 11.1) (see 7 Sects. 11.2.2 and 11.2.3). Another instrument to measure the ethical climate is the end-of-life practice score (EPS), used in the ETHICUS-2 study [3, 23, 24]. The score includes 12 ethical practice variables representing 12 aspects of ethical practice in the ICU, such as routine family meetings, daily deliberation on level of care, end-of-life discussions during regular meetings between team and family, end-of-life protocols, palliative care consultations, and national end-of-life legislation [23]. Mentzelopoulos and colleagues sought to determine whether a weighted EPS could explain a large, contemporary, worldwide variation in limitation decisions. The authors found that the most important weighted rescaled EPS components were ICU end-of-life protocols, palliative care consultations, and country end-of-life legislation. Suggesting the need for end-­ of-­life protocols in the context of withdrawing or withholding life-sustaining mea 

11

 

Radar chart `ethical climates’ Selfreflective and empowering leadership by physicians 0,8 0,6 0,4

Practice and climate of ethical awareness

0,2 0

Practice and climate of open and interdisciplinary reflection

–0,2 –0,4 –0,6 –0,8 –1

Active decision-making by physicians

Climate of not avoiding EOL decisions

Climate of mutual respect within the interdisciplinary team

Number of ICUs: Number of clinicians:

Good 12 (17,65%) 535 (17,88%)

Active involvement of nurses in EOL care and decision-making

Average + 20 (29,41%) 1253 (41,88%)

Average – 12 (17,65%) 302 (10,09%)

Poor 24 (35,29%) 902 (30,15%)

..      Fig. 11.1  Radar chart as to ethical climates. (Reprinted from [14] with permission of Benoit D.)

125 Ethical Climate and Proportionate Care

sures should be considered a positive factor during the terminal period of provision of effective palliative care. End-of-life protocol application should be supported by a weighted shared decision that continuation of life-sustaining treatments would confer more harm than benefit to the individual patient [24]. Additionally, the Hospital Ethical Climate Survey (HECS) has been used to measure ethical climate among nurses and focuses on factors related to nurses’ relationships with stakeholders within the hospital system, such as nurse peers, patients, managers, hospital administrators, and physicians [25]. A recent study of Silverman and colleagues used both tools, the validated EDMCQ and the Measure of Moral Distress for Healthcare Professionals (MMD-­HP) and asked respondents their intention to leave their jobs and also made comparisons between the different ICU types [26]. Significant differences exist in the perception of the ethical climate, levels of moral distress, and intention to leave between nurses and physicians and between the different ICU types. Inspecting the individual factors of the ethical climate and moral distress tools can help hospital leadership target organizational factors that foster interprofessional collaboration, lessen moral distress, decrease turnover, and improve patient care. The medical ICUs surveyed had a significantly higher overall climate score than the surgical ones. The study also showed that in a large urban academic center, the “intention to leave” was correlated with levels of moral distress, yet inversely correlated with the perception of the ethical climate for decision-making as measured by the EDMCQ tool. These results suggest that a deficient ethical climate for decision-making plays a significant role in developing moral distress in health care providers, which represents an influential factor for their “intent to leave” their jobs [26]. Given that physicians are often in positions of decisional authority in the hospital, involvement of and measurements that include physicians are important for an assessment of ethical culture. Studies have shown that physicians generally assessed ethical climate more positively than nurses highlighting the importance of the EDMCQ’s focus on interprofessional (particularly nurse–physician) trust, collaboration, and communication [26]. Listening to all members and welcoming their contributing to the discussions as moral agents constitutes an important part of fostering positive ethical climates and alleviating moral distress. Furthermore, the emphasis on interdisciplinary collaboration and communication is important as unit dysfunction and intrateam discordance exacerbate moral distress among members of the ICU team [5, 7, 11, 27–29]. 11.2.2 

 oes the Quality of the Ethical Climate in the ICU Improve D the Identification of Patients Receiving Disproportionate Care and Have an Impact on Patient Outcomes?

In the DISPROPRICUS study, 10.3% of patients received concordant perceptions of excessive care by at least two clinicians. Patients with concordant perceptions of excessive care were more likely to have a written treatment limitation decision in ICUs with a good ethical climate. The median time until death was significantly shorter for patients with concordant perceptions of excessive care in ICUs with a good ethical climate (5 days) compared to those with a poor ethical climate (14 days) [14].

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Based on these results, there is a need to recognize that clinicians often fail to identify dying patients early on, and this may mean depriving these patients and their families from the opportunity to receive optimal end-of-life care [14, 16, 30]. This paralyzing effect in the decision-making process still occurs often, even though there is a high need for a solely palliative approach toward a substantial number of ICU patients. The ethical awareness in the ICU needs to be raised, while also shifting the focus to the humanizing aspect of ICU care. However, this is still a major challenge. Stress, overt conflicts, moral distress, and burnout are driven by these behaviors and have been shown to hinder adequate interprofessional communication among the ICU team [7, 15, 17, 19]. Despite the well-known positive impact of good teamwork and open ethical discussion on patient outcomes, there is still much work to be done, as can be derived from the high percentages of ICUs with poor ethical climates (35%) reported in the DISPROPRICUS study [14, 15]. The clear distinction found between four types of climates (good, average (+) and average (−), poor) shows which different aspects to focus upon in order to improve the quality of EDM.  According to clinicians working in a good climate, leadership by senior doctors is active and facilitates interdisciplinary reflection and decision-making overall. This climate is also characterized by mutual respect, which is a prerequisite to facilitating interdisciplinary reflection and ethical awareness [14]. Within the average (+) climate, clinicians perceive that senior doctors empower nurses to share in interdisciplinary decision-­ making, mainly at the end of patients’ lives. Even though clinicians working in an average (−) climate believe that their senior doctors are able to make decisions, they do not find them promoting nurse involvement in decision-making in that respect. Finally, clinicians working in a poor ethical climate perceive a need for improvement in all of these factors. Integrating team communication with greater focus on being respectful, self-aware and reflective as a team, is a necessary step to achieve a good ethical climate. 11.2.3 

 hat Is the Relationship Between the Quality W of the Ethical Climate in the ICU and Intent to Leave Their Jobs Among ICU Clinicians?

Multiple qualitative and quantitative studies in the nursing literature have found that a positive ethical climate facilitated a decrease of moral distress and job leave among nurses [7, 26–28, 31]. Lack of a good ethical decision-making climate in the ICU may, apart from suboptimal patient care [10–13, 19, 29], lead to conflicts, moral distress, and burnout [6, 10–13, 21–25, 27], which may then lead to healthcare professionals leaving the ICU. To date, knowledge about clinicians’ intent to leave their jobs in Europe and the United States is fragmented. Research suggests that focusing more on the ethical climate in health care organizations could improve clinicians’ attitude to ethical tension, increase job satisfaction, and decrease the inclination to leave the job [7–12, 15, 21–24, 26]. Another objective of the DISPROPRICUS study was to assess the relationship between the quality of the ethical climate in the ICU and intent to quit [15]. After adjusting for clinicians’, ICU’s and country’s characteristics, the inclination to leave was lower for clinicians working in ICUs in a good, average (+) and average (−) cli-

127 Ethical Climate and Proportionate Care

mate compared to clinicians working in ICUs with a poor climate (with a p