UNIVERSITÀ DI PISA
DOTTORATO DI RICERCA IN DISCIPLINE FILOSOFICHE
Tesi di
Joseph A. Raho
MANAGING DEATH:
SUFFERING, THE NARRATIVE SELF, AND THE ETHICS
OF CONTINUOUS DEEP SEDATION
Tutor
TABLE OF CONTENTS
♦♦♦
PREFACE v
0.1 Why a dissertation on continuous deep sedation? 0.2 Line of argument
PART ONE: INTRODUCTORY MATTER
CHAPTER ONE
STATEMENT OF THE PROBLEM 3
1.1 A case of continuous deep sedation 1.2 Entering the “gray zone”
1.3 Background: an overview to death and dying in the 21st century 1.4 Contextualizing the problem
1.5 Palliative sedation compared with other “last-resort” options
1.6 Orienting our discussion: on what basis should we decide and who decides? 1.7 Summary and forthcoming argument
CHAPTER TWO
THE ETHICAL DEBATE ON PALLIATIVE SEDATION:
LITERATURE REVIEW 37
2.1 The early years (1990 – 1996) 2.2 The middle years (1997 – 2004) 2.3 The recent debate (2005 – present)
Appendix A: literature review of ethics articles on sedation Appendix B: literature review of research articles on sedation
PART TWO: FUNDAMENTALS OF ETHICS IN CLINICAL
MEDICINE
CHAPTER THREE
METHODOLOGY PART I: ORIENTING APPROACHES
3.1 Some sources of ethics and why they fail 3.2 Bioethics as general orienting framework
3.3 Position one: the ethical basis of medicine as internal to the practice of medicine 3.4 Position two: the ethical basis of medicine as external to the practice of medicine 3.5 Brief responses to criticisms of the internal approach
CHAPTER FOUR
METHODOLOGY PART II: APPROACHES TO THE ETHICS
OF END-OF-LIFE CARE 137
4.1 Additional clarifications about the scope of ethics
4.2 Three ethical approaches to resolving a case of palliative sedation
4.3 An alternative point of departure for the ethics of end-of-life care: the narrative turn in bioethics
4.4 A modified internal/external account using a narrative methodology
PART THREE: CONTINUOUS DEEP SEDATION FOR
EXISTENTIAL SUFFERING
CHAPTER FIVE
CONTINUOUS DEEP SEDATION FOR EXISTENTIAL SUFFERING:
LITERATURE REVIEW 225
5.1 What is existentialism?
5.2 What is suffering? Cassell on the nature of suffering 5.3 What is existential suffering?
5.4 The relief of existential suffering: interventions that do not compromise consciousness 5.5 The relief of existential suffering through CDS: professional perspectives
5.6 Summary CHAPTER SIX
MANAGING DEATH:
THE ETHICS OF CONTINUOUS DEEP SEDATION FOR
EXISTENTIAL SUFFERING AT THE END OF LIFE 261
6.1 Against CDS for existential suffering: the position of Jansen and Sulmasy 6.2 Objection One
6.3 Objection Two
6.4 A reformulation of P(2) 6.5 Does CDS cause death?
6.6 CDS for existential suffering at the end of life: ethical analysis CHAPTER SEVEN
CONCLUSIONS
325 7.1 Research questions
7.3 Recommendations for further research 7.4 A final case of CDS for existential suffering
BIBLIOGRAPHY 333
CURRICULUM VITAE
345PREFACE
♦♦♦This dissertation is a work in moral philosophy and clinical ethics (also called “clinical bioethics”). For years, I have been interested in the philosophical questions that arise in medicine and, in particular, the intersection between theory and praxis. When undertaking this research for my Ph.D., I wished to find a way to unite both of these theoretical and practical interests in a way that could shed light on and illuminate practical decision making. These aims converge perhaps most forcefully in the end-of-life context. As I hope to show throughout the course of this dissertation, the bioethical debate surrounding palliative sedation is one area of current clinical practice that illuminates the challenges, and aspirations, of end-of-life care. Indeed, the bioethical debate highlights several important aspects of end-of-life care in general—most especially, the focus on what a “good death” might be.
My initial interest in the topic of palliative sedation came to me largely by accident. When I began my doctoral studies, in January of 2010, I knew that I wanted to pursue research in clinical ethics, especially end-of-life care, yet I was unclear as to which specific area. Some of my previous work in bioethics, with the President's Council on Bioethics in Washington, D.C., dealt with the topic of medical (or clinical) futility at the end of life. However, because there has been significant interest and published material on this topic in the United States for some time now, I was counseled to select an area of clinical ethics that would lend itself to original analysis.
In the beginning of 2011, I continued to research very broadly. During this time, I was in contact with two clinicians from Massachusetts General Hospital (MGH) in Boston, Massachusetts: Alexandra Cist (a physician) and Ellen Robinson (a nurse who has a Ph.D. in ethics), both of whom co-chair MGH's Optimum Care Committee. In 1974, the Optimum Care Committee was one of the first hospital ethics committees in the United States. Through our on-going relationship, Drs. Cist and Robinson invited
me to participate in a number of clinical ethics-related events at MGH, especially in the summer of 2011, including observations during ethics rounds in various intensive care units (ICUs).1
In mid-June 2011, I was fortunate to have attended a three-day intensive course on “Clinical Bioethics,” organized by Harvard Medical School in Boston. During this time, I was exposed to a number of recent issues in clinical bioethics and I was able to explore further possibilities regarding my dissertation research.2 Towards the end of the
month, a member of my family had mentioned in passing that there was an upcoming conference on bioethics and end-of-life care which she thought might be of interest to me. The conference, “Palliative Sedation: Moral Distinctions and Practical Considerations,” was sponsored by the International Association of Catholic Bioethicists (IACB) and held in Philadelphia, Pennsylvania, USA, from July 10-14, 2011. During this conference, I met Peter Clark, S.J., professor of theology and bioethics, director of the institute of bioethics (St. Joseph's University, Philadelphia, PA), and hospital ethicist for four hospitals in Philadelphia. It was actually in a conversation with Prof. Clark that the idea to write my Ph.D. dissertation on the ethics of palliative sedation first arose. The conference presented a broad overview to the topic, which afforded a solid basis from which to begin my research; I chose to focus my attention on the debate surrounding the use of continuous deep sedation for existential suffering.
Soon thereafter, I contacted my research advisor in Pisa, Prof. Sergio Bartolommei, to explain my choice in dissertation topic. Prof. Bartolommei provided much encouragement in this direction, and asked that I summarize the ethical dimensions of the subject. After reading my brief précis, Prof. Bartolommei had noticed that one of my bibliographic references was a European study authored by Guido Miccinesi, M.D. et al.3 It is truly amazing sometimes how small the world is. Prof.
1 Some of these activities at MGH included the following discussions and seminars: Optimum Care Committee meeting discussion of “Brain death, permanent vegetative state, and minimal conscious state,” May 5, 2011; Ethics Forum lecture, entitled “Re-defining Autonomy: Challenges in the Care for Individuals with Newly-Acquired Disability,” May 13, 2011; ethics rounds in the Burn Unit and the Medical ICU, May 19 and 26, 2011; Ethics Forum discussion of “Conscience and the Obstetrician,” June 10, 2011; meeting of the Optimum Care Committee, January 5, 2012.
2 Some of the topics explored during the three-day intensive course included: decision-making capacity, advance directives, how to analyze a clinical ethics case, the refusal of medical treatment, brain death, permanent vegetative state, medical resource allocation, as well as narrative approaches to clinical ethics.
Bartolommei had worked with Dr. Miccinesi on a previous ethics committee; for this reason, Prof. Bartolommei wholeheartedly recommended that we contact Dr. Miccinesi to see if I might be able to meet him in person in Florence.
September 23, 2011 marks the first day that we met. Dr. Miccinesi very much supported my research and recommended that I supplement my training in moral philosophy and bioethics by learning more about the “clinical reality” where palliative sedation takes place. What he envisioned was a brief period of visits to hospice in order to learn about the clinical trajectory and decision-making process for palliative sedation. That very same day, Dr. Miccinesi introduced me to Dr. Piero Morino, Director of the Hospice Convento delle Oblate, in Florence. Together with Dr. Morino and Dr. Miccinesi, we agreed that I would visit the hospice and perform this research project. My aim was to analyze the medical records of Dr. Morino's patients who entered hospice during an 8-month period. I was curious to learn about the philosophy and ethos of hospice and palliative care, as such information is difficult to obtain from bioethics textbooks. Governing questions for my project were as follows: What kind of terminally ill patient arrives in hospice? What specific symptoms are common? How long do patients typically stay in hospice? What is the process of advance care planning? How many patients during the 8-month period required sedation to unconsciousness to control refractory symptoms? What were the primary refractory symptoms identified? Was artificial nutrition and hydration either started or continued in patients who received sedation?
This research—an analysis of one hundred twenty-one medical records of hospice patients who entered between January 1 – August 7, 2011—was conducted from October 17, 2011 until mid-May of 2012 at the Hospice Convento delle Oblate of Florence. A summary of this research is as follows. Of the one hundred and twenty-one patients who entered hospice during the period indicated above, one hundred and two died (84 percent). The mean age was 70.78 years. Deceased patients included forty women (39.22 percent) and sixty-two men (60.78%). Of those patients for whom we obtained Karnosky Performance Status Scale (KPS)4 scores: eight (9.64 percent) had a
Michael Norup, Gerrit van der Wal, on behalf of the EURELD Consortium, “Continuous Deep Sedation: Physicians' Experiences in Six European Countries,” Journal of Pain and Symptom Management (2006) 31(2): 122-129.
4 The Karnofsky score allows patients to be classified according to their functional impairment. Patients are evaluated in increments of 10% on a scale beginning with 100% and ending with 0%; the lower the Karnofsky score, the worse the survival is for most serious illnesses. For example, a score
KPS of 10% at admission; thirty-two (38.55 percent) had a KPS of 20% at admission; thirty-three (39.76 percent) had a KPS of 30% at admission; seven (8.43 percent) had a KPS of 40% at admission; two (2.41 percent) had a KPS of 50% at admission; and one (1.20 percent) had a KPS of 60% at admission. Intermittent or continuous sedation was performed for thirty-eight patients (37.25 percent) and artificial fluids were provided in half of these cases. Sedation was continuous in thirty cases (78.94 percent); either intermittent sedation or a change from intermittent to continuous sedation occurred for the remaining patients.5
My work in hospice became a formative experience and inspiration for writing this dissertation. It taught me more than I could ever have learned in a classroom. For the first time in my life, bioethics became real—one patient, one or more doctors, nurses (not to mention the other members of the medical team), and a series of treatment decisions to be made, often under pressure. The ethics of bioethics become particularized in the real-life circumstances of the terminally-ill patients whom I met— patients with a defined past, an unstable present, and a looming future; patients with families, friends, joys, fears, expectations, hopes, and dreams. What should be done for this patient, under these circumstances, at this moment in time—given her particular life story, personal values of the good life, and goals of care? This experience further enabled me to enter—for the first time in my life—into the daily routine and clinical work of hospice physicians, and enabled me to catch a unique glimpse of the physician-patient relationship as it relates to this particular physician-patient population. For those of us not clinically trained, it is common to believe that all patients with identical diagnoses and prognoses are similar; that their reaction to information is uniform; that their end-of-life preferences should align. This could not be further from the truth. Each patient is radically singular. This has implications for ethics.
A second formative experience for my research was gained through informal interviews with clinicians and other caregivers who perform palliative sedation. I began these interviews in Florence (Hospice Convento delle Oblate), and then expanded to include clinicians from Mantova (Ospedale Carlo Poma), Milano (Virgilio Floriani Hospice at the Istituto Nazionale dei Tumori di Milano), and Genova (Hospice Maria of 50% means that this patient requires considerable assistance and frequent medical care. A score of 0% means the patient is dead.
Chighine). In total, I conducted informal interviews with five clinicians in Florence (Marco Ghelardi, Barbara Wurgler, Dr. Lara Iacopozzi, Dr. Filippo Canzani, Dr. Piero Morino); one physician in Mantova (Dr. Luciano Orsi), as well as informal talks with the entire palliative care team; a group discussion in Milano (with Director of Palliative Care, Pain Therapy and Rehabilitation, Dr. Augusto Caraceni,6 and his team of more
than ten clinicians, including doctors, nurses, psychological counseling, spiritual support, physical therapy); and two physicians in Genova (Dr. Massimo Costantini7 and
Dr. Michele Gallucci). These interviews helped me further to understand the clinical “landscape” of palliative sedation. My debts to these individuals for allowing a non-clinician and philosopher to speak with them is enormous.
Finally, there were two occasions in particular that deserve mention. At the end of my 6-month “internship” with the Hospice Convento delle Oblate, I was fortunate to have been invited to present a works-in-progress to members of the team of the hospice on June 28, 2012. Several months later, on October 3, 2012, I was also invited to present my research to students of bioethics at St. Joseph's University in Pennsylvania, PA. I wish to thank members of both groups for stimulating discussions and for giving me further “material” for the dissertation that follows.
In the remainder of this Preface, I wish to explain why I chose to write my dissertation on continuous deep sedation and briefly delineate my line of argument.
0.1 WHY A DISSERTATION ON CONTINUOUS DEEP SEDATION?
One of the themes that emerged from the 2011 conference on palliative sedation in Philadelphia was that there is a need to clarify the debate. What is palliative sedation? Moreover, what is continuous deep sedation—is it palliative care or is it a kind of “euthanasia in disguise”? That is, does palliative sedation aim exclusively at symptom relief or does it hasten (even cause) death? What is the moral difference between palliative sedation on the one hand and continuous deep sedation on the other? Is 6 For many years, Dr. Caraceni has served as member of the board of directors of the Italian Association of Palliative Care and has been appointed as Vice President of the European Association of Palliative Care (EAPC).
7 At the time, Dr. Costantini was the regional director for Palliative Care in Liguria and Director of the Hospice Maria Chighine of Genova (U.O. Coordinamento Regionale Cure Palliative, Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS), Azienza Ospedaliera Universitaria San Martino, I.S.T. Istituto Nazionale per la Ricerca sul Cancro). Currently, Dr. Costantini works with the Palliative Care Unit of the IRCCS in Reggio Emilia.
sedation clinically indicated and ethically appropriate only in cases of refractory distress that is physical in nature, or might it also be contemplated for distress that is largely existential? After more than twenty years of scholarship, these issues are not settled, yet recent epidemiological research sheds some light on the way the practice has been performed in the clinic. Although palliative sedation has wide professional (medical and ethical) consensus, continuous deep sedation remains highly charged— especially with regard to existential suffering. Thus, my first aim in this dissertation is to clarify this debate.
As we will see in Chapter Two, the topic of palliative sedation begins in 1990 with the first research study conducted in Milan. Today, there are hundreds of articles on the topic. Yet after more than 20 years, there is yet to be a comprehensive ethical analysis of palliative sedation. The only book-length treatments of the topic are to be found in two edited volumes—the first from 2004,8 the second from August 2013.9
Both of these volumes contribute greatly to the growing scholarly debate concerning sedation, yet neither offers a comprehensive analysis from the perspective of moral philosophy. Much of the empirical research on palliative sedation was published after 2004; for this reason, many of the early M.A. theses and Ph.D. dissertations on the topic deal with specific issues—for instance, analyses from nursing practice, theology, and moral philosophy—but do not address existential suffering in detail.10 Thus, a
second aim of this dissertation is to provide a more comprehensive analysis of the ethics of continuous deep sedation, especially as this pertains to existential suffering.
Why another study on end-of-life care? Are not the issues in sedation very similar to other ethical issues in this domain—such as refusal of life-sustaining treatments, voluntarily stopping eating and drinking, physician-assisted suicide, and even voluntary active euthanasia? In this dissertation, I argue that palliative sedation in general, and continuous deep sedation in particular, share some aspects in common with these other end-of-life options, but in many ways sedation represents something 8 Torbjörn Tännsjö (ed.), Terminal Sedation: Euthanasia in Disguise? (Dordrecht, Kluwer: 2004). 9 Sigrid Sterckx, Kasper Raus, and Freddy Mortier (eds.), Continuous Sedation at the End of Life:
Ethical, Clinical and Legal Perspectives (New York, Cambridge University Press: 2013a).
10 The singular exception is chapter seven of the Ph.D. dissertation of Livia Anquinet, Continuous Sedation Until Death: Experiences of health care professionals in Belgium, the Netherlands and the United Kingdom (Brussels, VUB Press: 2013). This dissertation chapter has since been published; we will review this article in chapter five. I wish to express my gratitude to Professor Luc Deliens for kindly sending me a copy of the dissertation of Drs. Anquinet and Raus. For a full list of M.A. theses and Ph.D. dissertations, I refer the reader to the Bibliography.
new. There are also cases in which sedation practices may be more problematic. For example, for some ethicists there is a bright line to be drawn between allowing to die and killing. In the case of refusal of life-sustaining treatments, an argument can be made that it is the disease that kills the patient, not the action of turning off a ventilator, for instance. In the case of voluntarily stopping eating and drinking, the action is patient-directed and increasingly ethically permissible because physicians may not force a patient to eat or drink. By contrast, palliative sedation is not a passive act, but an act that requires the active involvement of physicians. Moreover, sedation practices do share some theoretical aspects with physician-assisted suicide and voluntary active euthanasia—for example, the importance of relieving pain and suffering. I argue that palliative sedation in general, and continuous deep sedation in particular, are last-resort options when all other palliative treatments short of compromising consciousness have proved refractory to comprehensive palliative interventions. I will also argue that the ethics of palliative sedation and CDS must be evaluated on their own terms.
0.2 LINE OF ARGUMENT
In this dissertation, I intend to argue that, under certain well-defined circumstances, it is morally permissible for continuous deep sedation (CDS) to be used to treat and relieve existential suffering that has proven refractory to traditional palliative interventions for patients who are imminently dying. This conclusion will be sustained from a consideration of sedation practices in general and through a reflection of the aims and goals of palliative care in particular. This conclusion is controversial. Many professional medical guidelines prohibit the use of CDS for suffering that is purely existential in nature. Several ethicists also argue against the use of CDS in general, and especially for cases of existential suffering. We will explore the reasons why some hold this position and we will show why the relief of existential suffering is fundamental to palliative care and the goals of medicine more generally.
My argument will unfold in the course of this dissertation in three parts (each consisting of two chapters), followed by a conclusion. By way of overview: Part I situates the debate on palliative sedation in general and our inquiry in particular; Part II brings us to the question of methodology in ethics and clinical ethics; finally, Part III will address the issue of existential suffering as an indication for continuous deep
sedation when death is considered imminent. The specific contours of my argument are as follows.
Chapters One and Two provide an overview to the dissertation and the literature on palliative sedation. In Chapter One, I will summarize the moral problem and explain how sedation practices grow out of certain ethical considerations that are fundamental to palliative care. We will examine the problems occasioned by refractory symptoms at the end of life, and we will explain the moral relevance of end-of-life decisions taken either by patients or their surrogates. The context in which these decisions are made will be explained with reference to the contemporary backdrop of dying in the twenty-first century. Palliative sedation will be compared with other options of “last resort”— such as physician-assisted suicide and voluntary active euthanasia—and reasons will be offered as to why palliative sedation merits ethical analysis. Finally, two touchstones of contemporary ethical decision making are highlighted: informed consent and self-determination.
Chapter Two offers a general literature review of palliative sedation. Continuous deep sedation will be examined as a subset of sedation practices in general. Several central ethical questions will be highlighted: (1) Does palliative sedation hasten death? (2) Is the withdrawal of assisted nutrition and hydration understood as intrinsic or external to the decision to start sedation? (3) Does the principle of double effect apply? And (4), may a distinction be drawn between sedation practices and PAS/VAE? In recent years, however, the ethical debate has focused on continuous deep sedation until death, especially regarding the following two questions: (5) What is the moral significance of reducing—and, in some cases, obliterating—consciousness before death approaches? Finally, (6) is existential suffering ever refractory, and may it be an indication to begin continuous deep sedation? Whereas the first four ethical questions are more straightforward, we will see how the question is much more difficult when we move to consider existential suffering.
Chapters Three and Four bring into focus the question of methodology in ethics and bioethics: how are we to reason through a moral problem in clinical medicine? In Chapter Three, we will consider two broad positions with regard to methodology. The first understands the ethics of medicine as internal to the practice of medicine itself. As we show, the crucial point is whether medicine per se is capable of deriving its own
ethic to guide decision making at the bedside. In contrast to this position, we will examine a second: the ethics of medicine derive from considerations external to the practice. My conclusion will be that an ethic for clinical medicine ought to derive in crucial ways from both the internal and external positions—that is, reasoning in clinical ethics cannot be simply reducible either to the internal or the external position. Some explanation for why this is so will be offered.
Chapter Four carries these reflections further by examining three main approaches (methodologies) to clinical ethics. A first approach, principlism, holds that moral considerations from the “common morality” enable us to formulate four prima facie moral principles for application to the problems of contemporary biomedicine. A second methodology, the moral rights approach, looks to patient autonomy and self-determination as ways to analyze an ethical problem. The third approach, Pellegrino and Thomasma's beneficence-in-trust, proposes a re-interpretation of the central Hippocratic dictum to act to benefit patients. In the final section of this chapter, a recent proposal will be delineated and adopted in part by the present author: narrative ethics. This approach places emphasis on the context in which medical decisions are made as well as the importance of forming a moral self. Central will be the view that we need to respect not only patients' values of the “good life,” but also their understanding of a “good death.”
Chapters Five and Six connect our analyses from the first two parts in order to tackle the question of whether continuous deep sedation may be a clinically effective and morally appropriate intervention to combat the extremes of existential suffering in imminently dying patients. Chapter Five provides a literature review of existential suffering at the end of life and Chapter Six offers an ethical analysis. In our assessment of the morality of the practice, we will examine (a) whether continuous deep sedation hastens or causes death; (b) whether continuous deep sedation is equivalent to PAS/VAE on the basis of a higher-brain (neocortical) definition of death; and the positions “for” and “against” the use of continuous deep sedation for existential suffering. I will defend the position that the use of continuous deep sedation, even to combat the extremes of purely existential suffering, within the two-week period is not as ethically problematic as some believe it to be. Because sedation does not hasten death or actually kill the patient, the central question we need to face is the value of
unconsciousness before “natural death.” I suggest that this question may be answered by reflecting on the internal ends of medicine and the narrative self. Concluding remarks in Chapter Seven will explain the significance of these results and their implications for further research. In offering these reflections, my aim is simply that of deepening our reflection for the ethical debate.
Joseph A. Raho Pisa, Italy 2014
PART ONE
CHAPTER ONE:
STATEMENT OF THE PROBLEM
♦♦♦magine that you are a palliative care physician and director of a hospice. Nearly every patient who enters under your care will die. Many of these deaths will be the result of cancer. You are familiar with death; you have seen the varieties of human frailty; you know what it means to die from a progressive lethal malady; you even consider yourself well-versed in the complexities of providing comprehensive end-of-life care to every patient who enters your hospice. A recent case has greatly challenged you and your palliative care team. Although you are confident in your team's ability to reduce pain in nearly every case, there appear to be at least some patients who continue to suffer. These patients challenge your every resource; the cases they present are morally complex. Let us consider one in particular.
I
1.1 A CASE OF CONTINUOUS DEEP SEDATION11
One day, you meet L.M., a 42-year-old female psychologist who is complaining of “neck, back, and diffuse bone pain,” as well as “severe painful peripheral neuropathy presumed to be secondary to chemotherapy.”12 You learn that L.M. was diagnosed with
breast cancer in 1986; she had received conventional chemotherapy as well as radiation to her spine for epidural disease.13 When you ask her to describe her pain, she states that
with every moment she feels “a squeezing, band-like sensation around her upper thorax.”14 She places her level of pain at 10 out of 10 on a pain scale. You also learn
that L.M., before admission to the Palliative Care Service, had received various 11 This case is taken from Lauren Shaiova, “Case Presentation: 'Terminal Sedation' and Existential
Distress,” Journal of Pain and Symptom Managment (1998) 16(6): 403-404. 12 Ivi, p. 403.
13 In cases of metastatic spinal epidural disease, the spinal cord is compressed and there is potential neurological involvement.
opioids, “but tolerated them poorly due to nausea, vomiting, and mental clouding.”15
The purpose of her being admitted to hospital was to “establish the pain diagnosis, adjust her pain medications, and provide other interventions that could minimize suffering and maximize her functional status.”16 Finally, L.M. tells you that she “was
interested in quality, not quantity of life for the remaining time that she would be alive.”17
After her hospitalization, L.M. experienced continued pain, which was treated with a 24-mg bolus of dexamethasone,18 as well as an infusion of intravenous
levorphanol—analgesia that the patient could control.19 Upon receiving the results from
magnetic resonance imaging, you find that there was recurrence of the tumor T4-8, as well as other complications. For this reason, her doses of levorphanol “were escalated until pain control was established with an acceptable side effect profile. […] Her pain was well-controlled at rest, and despite moderate incident pain, she was discharged home. The patient was, in effect, a c-5 incomplete functional quadriplegic at the time of discharge.”20
Once home, L.M. was described as having “almost total immobility; she was totally dependent in her activities of daily living.”21 By this point, although she
described “minimal physical pain,” she “experienced helplessness and severe psychological suffering.”22 Of note, you and her other clinicians detected “no clinical
signs of symptoms of depression, dementia, or cognitive impairments and a psychiatric consultation confirmed this impression.”23 Her suffering was characterized in the
following way:
At the core of L.M.'s distress was the inability to bear the psychological havoc she felt that she was imposing on her family, as they were forced to watch her die slowly. She agonized about the prospects of lying in bed paralyzed, waiting to die, while her husband, three young children, and mother were witness to this emotionally painful process. Although her pain was adequately controlled, this existential suffering remained profound.24
15 Ibid. 16 Ibid.
17 Ibid.; emphasis added.
18 Dexamethasone is a corticosterioid used as an anti-inflammatory and anti-allergic agent. 19 Levorphanol is a potent analgesic and has properties similar to morphine.
20 Shaiova, “Case Presentation: 'Terminal Sedation' and Existential Distress,” p. 403. 21 Ibid.
22 Ibid. 23 Ibid. 24 Ibid.
In light of this distress, you and your clinical team continue “[e]xhaustive attempts to provide even greater analgesia and symptom management”—attempts which, to your surprise, fail to “alleviate L.M.'s psychological and spiritual distress.”25
At this point, L.M. “requested that her caregivers honor her desire to end the protracted psychological suffering that both she and her family endured.”26 In particular, her
request was for physician-assisted suicide. Because assisted suicide is illegal where you practice medicine, you inform L.M. that this is not an option.27
As an alternative, you offer to provide L.M. with a form of palliative sedation,28
which has been defined as “the monitored use of medications intended to induce a state of decreased or absent awareness (unconsciousness) in order to relieve the burden of otherwise intractable suffering in a manner that is ethically acceptable to the patient, family and health-care providers.”29 Because L.M. is not “in the very terminal stages of
illness with an expected prognosis of hours or days at most”—a criterion that is used to determine whether continuous deep sedation should be offered—you offer to provide intermittent sedation, which allows for periods of alertness. You explain that she will undergo a period of reduced consciousness in order to alleviate her experience of protracted distress. You explain further that after several hours, she will be brought back to a more alert, wakeful state. L.M., although initially agreeing to the use of palliative sedation, does not see the reason why she should only lose consciousness “temporarily.” She requests that the sedation be continuous, not intermittent. Furthermore, she is not interested in merely “reduced” consciousness, but complete unconsciousness until her death occurs. Only in this way, she states, will her psychological and existential distress be relieved. In her words, “Just put me to sleep 'till I die.”
How should you, as her physician, respond to this request? It is within the bounds of ethical medical practice? Is it legal? Regardless of whether or not continuous deep sedation is provided, how much longer would L.M. have to live? Does this kind of sedation hasten death? Does it directly kill the patient? Is it a form of euthanasia—so-25 Ibid.
26 Ibid. 27 Ivi, p. 404.
28 This part of the case has been modified by the author.
29 Nathan I. Cherny, Lukas Radbruch, The Board of the European Association for Palliative Care, “European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care,” Palliative Medicine (2009) 23(7): 581-593; p. 581.
called “slow euthanasia”—or even covert “euthanasia in disguise”? Are you bringing about a “social death”? Are there other palliative interventions that might be tried before continuous deep sedation is pursued? Is there a moral difference between using palliative sedation for physical pain and using it for existential distress? What is existential distress? What defines it? Is it reversible? When, if ever, does it become refractory—and how can we know?
1.2 ENTERING THE “GRAY ZONE”
End-of-life cases have always been painfully difficult for patients, families, and clinicians alike: our ideas about what it means to be human, what it means to die, and what it means to have a “good death” are called into question. But today, matters of death and dying have taken on added dimensions. To put it bluntly: we have ways of intervening in human life that make the timing of death increasingly a choice relative to a set of values. Does this mean that death has become a moral choice? Have we entered into a “gray zone”?
Consider the remarks of an Australian palliative care specialist in relation to a case of sedation prior to ventilator withdrawal.30
[O]ne of the most challenging and, I think, instructive situations I've ever been in, was a man [with a terminal illness]31 who … ended up on a BIPAP32 machine … had a lot of interaction with his family and decided that he would take the ventilator off when he got to the point that he was 24 hours dependent, and he felt it was time and he wanted someone to be there to relieve any distressing symptoms that might arise. The [general practitioner] refused to have anything to do with it …. So I and a palliative care nurse went there … he took his ventilator off, I put in an IV, gave him a bit of sedation beforehand, but not, you know, to the point where he was … asleep, he was just a little bit woozy, took the ventilator off, and over the next three or so hours, poured in what I would've thought was enough midazolam, phenobarb and opioid33 to
kill a horse. And, I kept him sedated and at any point where he looked in any way distressed, I would give him another small bolus. And he eventually died, and quite peacefully....34
Did the palliative care physician kill his patient—that is, did he cause the death 30 This narrative is taken from Charles D. Douglas, Ian H. Kerridge, and Rachel A. Ankeny, “Narratives of 'Terminal Sedation', and the Importance of the Intention-Foresight Distinction in Palliative Care Practice,” Bioethics 27(1): 1-11; p. 4. This paper reports the findings of a qualitative study (in-depth interviews) of 18 palliative care medical specialists in Australia.
31 In this specific instance, block quotes are in the original citation.
32 As the authors state, a BIPAP machine is a kind of “breathing support apparatus.”
33 As the authors state, although midazolam and phenobarbitone are sedatives, opioids are natural derivatives of opium, such as morphine, and have analgesic, as well as some sedative effects.
of the patient? This case, similar to the case of L.M., raises a host of ethical issues. It must be stated here that it is both ethically acceptable and legally permissible to withhold or withdraw burdensome medical treatments, including life-sustaining medical treatments; and although it is sometimes ethically controversial to withhold or withdraw so-called ordinary medical treatments—such as artificial nutrition and hydration (ANH)—this choice, too, is increasingly acceptable, both legally and morally.35 In the case at hand, the patient's BIPAP machine was, for him, burdensome,
and so it was within his purview to decide when, and under what circumstances, to remove it. His decision to withdraw the BIPAP machine once he became completely dependent on it represents a choice consistent with his values and preferences. It is also generally recognized that, in cases such as this, physicians should provide enough sedation so that the patient will not experience any distress associated with the discontinuation of mechanical ventilation; sedation is used in this setting to prevent the experience of suffocation. If we take both of these aspects together—the patient's ethical and legal right to withdraw the BIPAP machine and the physician's ethical duty to provide enough sedation to blunt any distress associated with that action—where is the ethical issue?
There are several identified in the literature.36 Here, we will focus on two of
them. First, does the midazolam, phenobarb and opioid “cocktail” have a direct causal role in the death of the patient? If it does, what would be the practical and moral difference between that action and physician-assisted suicide (PAS) or voluntary active euthanasia (VAE)? In other words, what is the difference between providing a combination of sedatives stepwise over the course of several hours, and providing one lethal dose to bring about the death of the patient as quickly and painlessly as possible? 35 As the updated Hastings Center Guidelines state,
[t]he right of patients to forgo life-sustaining treatment has been recognized by law in the United States starting in the mid-1970s. This right is reflected in landmark cases such as Quinlan (producing the first state supreme court decision on end-of-life decision-making in 1976) and Cruzan (producing the first U.S. Supreme Court decision on this issue, in 1990), in a large number of legal cases decided since Quinlan, and in federal and state statutes.
Nancy Berlinger, Bruce Jennings, and Susan M. Wolf, The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life (revised and expanded second edition; New York, Oxford: 2013), p. 3.
36 A more detailed look at the ethical issues surrounding the practice of palliative sedation will be offered in Chapter Two.
In the words of the palliative care physician:
But the challenge is … well, if you're going to do that, what is the difference, really? What is the difference between doing that or giving a bolus … and what would I want? And I think I would want the bolus … if I got to that point … I mean this man, he was dying, he was going to die very soon, and he was pretty well helpless, but he could still communicate. And that's probably the point where I would pull the pin as well.37
Those who argue for an ethical difference between the two practices—that is, between palliative sedation on the one hand, and PAS/VAE on the other—seek to vindicate the physician's actions on the basis of the intention to aggressively alleviate pain, but not to hasten or bring about the death of the patient. This brings up the second ethical issue: Do the physician's intentions matter morally? Is it ethically acceptable for the physician to intend to palliate symptoms while foreseeing the possibility of negative effects—such as respiratory depression and hastened death?
We do indeed seem to be entering that gray zone. The use of sedatives in end-of-life care has become quite heated ever since the first published study in 1990.38 Is the
use of sedation ethically compatible with the goals of palliative care? Ought sedation to be used only as a “last-resort” option when other palliative interventions have proven ineffective, or should sedation be integrated as part of routine palliative care when requested explicitly by the patient? From a moral standpoint, is there anything that distinguishes palliative sedation from PAS/VAE? Might it be a morally preferable alternative? Some of these questions will be addressed in this dissertation. As a way of situating the debate, we need to first examine the context in which these problems arise.
1.3 BACKGROUND: AN OVERVIEW TO DEATH AND DYING IN THE 21st
CENTURY
Currently, 56 million people die each year.39 The way we die today is something
qualitatively different than what it was in the past. Years ago, we tended to die quickly —many at childbirth, during war, through accident, or infectious disease.40 Life
37 Douglas, Kerridge, and Ankeny, “Narratives of 'Terminal Sedation,'” p. 4; emphasis in original. 38 Vittorio Ventafridda, Carla Ripamonti, Franco De Conno, and Marcello Tamburini, “Symptom
Prevalence and Control During Cancer Patients’ Last Days of Life,” Journal of Palliative Care (1990) 6(3): 7-11.
39 Jane E. Seymour, Jeff French, and Eve Richardson, “Dying matters: let's talk about it,” British Medical Journal (2010) 341: c4860: 646-648; p. 647.
expectancy was, by modern day comparison, quite early. Many died between the ages of 20 and 40.41 From 1600 until 1870, the main causes of death included infectious
diseases such as dysentery, cholera, influenza, plague, smallpox, typhoid fever, and tuberculosis.42 Medicine, for its part, was largely powerless in the face of death. As
Daniel Callahan explains,
[w]ith bacillary dysentery, if death was to be the outcome, it would come within two to four days; the entire course of the disease was only one week. With cholera, death could come within a few hours, and one week was a typical course for that illness as well. In the case of typhoid fever, it could be a few days or up to two weeks. With the plague, the disease could last longer than four weeks, but death was most likely in the first and third weeks. To be sure, some indolent illnesses occurred (especially TB), and some of the slower diseases of old age (e.g., cancer), but the ordinary fatal illness would rarely last longer than eight weeks.43
If one somehow managed to escape the ravages of parasitic and infectious disease, death was usually not too far off. Those who were fortunate enough to live into old age often died from pneumonia—the “old man's friend,” as John Hardwig put it. “Since pneumonia could not be treated,” as Hardwig explains, “they died and were thereby delivered from the peril of a long period of debility at the end of life.”44 Death,
under these circumstances, was rather quick. It was certainly not a drawn-out process; we did not linger neither here nor there.
In the twenty-first century, death is something different. Hardwig goes on to state, rather provocatively, that today “we have killed the old man's friend.”45 How so?
It was not until the second half of the nineteenth century that medicine began to assume new powers. A “revolution” in the scientific basis of medicine enabled us to combat many of these once-lethal diseases. As early as 1870, life expectancy rose drastically with a fall of infant- and child-mortality rates.46 Better public sanitation, the
Century,” Hastings Center Report (2009) 39(4): 37-45; p. 37.
41 Margaret Pabst Battin, Ending Life: Ethics and the Way We Die (New York, Oxford University Press: 2005b), p. 18. As one scholar has noted, life expectancy in the United States at the turn of the 20th century was 47 years. Ronald E. Cranford, “Modern technology and the care of the dying.” In: David C. Thomasma and Thomasine Kushner (eds.), Birth to Death: Science and Bioethics (Cambridge, Cambridge University Press: 1996), pp. 191-197; p. 191.
42 Daniel Callahan, The Troubled Dream of Life: Living with Morality (New York, Simon & Schuster: 1993), p. 43.
43 Ivi, p. 42; references omitted.
44 Hardwig, “Going to Meet Death,” p. 38. 45 Ibid.
development of immunization, and the arrival of antibiotics47 put us in a stronger
position to combat disease and illness in altogether unprecedented ways. A turning point in medicine came with the Second World War. Antibiotics were rare before the war and penicillin treatment was in its infancy. As Cranford writes, “[t]he widespread use of respirators during the polio epidemics of the 1940s and 1950s was directly linked to the knowledge and experience gained during the Second World War in the use of respiratory support systems for pilots at high altitude.”48 The 1960s and 1970s saw great
advances in resuscitation techniques, and it was here that we see the emergence of the first intensive care units, which are by now quite specialized.49
The upshot of all of this is a much greater capacity to prolong human life by simulating and replacing physiologic function in critically ill patients. Mechanical ventilation, cardiopulmonary resuscitation, artificial hydration and nutrition, and kidney dialysis are several crucial interventions in our armamentarium of weapons to be marshalled against death. Add to these accomplishments the successes in organ replacement and the first human heart transplant in 1967 by Dr. Christiaan Bernard. With these and other discoveries, death was brought increasingly under human control. Today the life expectancy in the developed world is around 80 years of age, and it is expected to rise.50 Is this a welcome development, and what is its significance?
Though we now live longer, our years gained are not disease- and illness-free. As medicine combats and eradicates certain maladies, the irony is that other maladies inescapably crop up. In the United States, for instance, cancer is now the second leading cause of death.51 Our deaths by chronic and degenerative diseases today have
47 Battin, Ending Life, p. 18.
48 Cranford, “Modern technology and the care of the dying,” p. 193.
49 Cranford lists the following: medical, cardiological, pulmonary, neurological, nephrological, pediatric, and neonatal intensive care. See ivi, p. 194.
50 Ibid.
51 The 15 leading causes of death in the United States include (ranked first to last): diseases of the heart; malignant neoplasms; chronic lower respiratory diseases; cerebrovascular diseases; accidents (unintentional injuries); Alzheimer's disease; diabetes mellitus; nephritis, nephrotic syndrome and nephrosis; influenza and pneumonia; intentional self-harm (suicide); septicemia; chronic liver disease and cirrhosis; essential hypertension and hypertensive renal disease; Parkinson's disease; and pneumonitis due to solids and liquids. See Sherry L. Murphy, Jiaquan Xu, and Kenneth D. Kochanek, “Deaths: Preliminary Data for 2010,” National Vital Statistics Reports January 11, 2012 60(4); pp. 7-8 (Hyattsville, MD, National Center for Health Statistics). As Bruce and Boston explain, citing data from the World Health Organization, “[t]he number of global cancer deaths is projected to increase 45% from 2007 to 2030 with more than half of all cancer cases occurring in developing countries.” Anne Bruce and Patricia Boston, “Relieving existential suffering through palliative sedation; discussion of an uneasy practice,” Journal of Advanced Nursing (2011) 67(12): 2732-2740; p. 2733.
supplanted the deaths by infectious disease of the past; and whereas infectious disease brought death quickly, many of today's disease trajectories span years. All of this has contributed to what Callahan characterizes as the “great trade off.” By this he means that modern medicine offers us the following deal:
[I]f you put your life in our hands, we will (for the most part) save you from a quick death by a heart attack or infectious disease thus allowing you to contract later in life a number of chronic diseases that will allow (or force) you to die much more slowly. Had you contracted a lethally infectious disease 150 years ago and survived, you would be back in good health, but with a much shorter life span thereafter in those days. With chronic disease you will most likely have a much longer life, but spend a significant portion of your old age in poor health, inexorably declining.52
The implications of this situation, as Callahan goes on to state, are only too clear:
[...] medicine can offer no cures for chronic diseases, only the capacity to keep us alive longer with one or more of them. It is possible to save a person's life from cancer at 65, putting them on drugs and monitoring them thereafter, to save them from heart disease at 75 (with still more drugs to keep them going), and then to draw out such at life at 85 with Alzheimer's disease.53
Not only do we live longer and die from different kinds of ailments today—our cultural traditions have shifted. Until about 60 years ago, people traditionally died at home, surrounded by loved ones and community. By contrast, many today die in institutional settings, attached to increasingly sophisticated, yet burdensome and impersonal, medical technologies.54 Currently, one is much more likely to die in a
hospital after an explicit decision has been made either to withhold or withdraw life-sustaining medical treatment. Such decisions occur in upwards of 70% and 80% of cases in some institutional settings, such as ICUs. As Callahan notes, “[c]omplaints about care for the dying had mounted during the 1960s, fueled by technological progress in sustaining life, by too many patients abandoned by physicians as they lay dying, by a lack of patient choice on how their lives should end, and by woefully 52 Daniel Callahan, “End-of-Life Care: A Philosophical or Management Problem?” In: Id., The Roots of
Bioethics: Health, Progress, Technology, Death (New York, Oxford: 2012b), 75-86; p. 76. 53 Ivi, p. 77.
54 Peter A. Clark, Death with Dignity: Ethical and Practical Considerations for Caregivers of the Terminally Ill (Scranton, University of Scranton Press: 2011). In fact, the early years of bioethics were filled with debates concerning whether burdensome, life-prolonging treatments (e.g., ventilators, dialysis machines, etc.) were always morally obligatory or whether, under certain circumstances, patients may be “allowed to die” by either withholding or withdrawing such treatments. Along with these debates came a recognition that attending to patients’ “quality of life” concerns was of critical importance. Such quality of life concerns would become central to end-of-life debates.
inadequate pain management.”55 Looking back, roughly four decades later, we seem to
have done reasonably well in confronting some of the challenges in the end-of-life context.56
Yet there is more work to be done. The end-of-life context continues to present problems—for patients, their families, and those who treat them. Why is this so? What kind of problem is it? As Callahan explains, there are two ways in which to conceive of the problem. According to the first, end-of-life care is essentially a management and education issue—in other words, “one in which better medical techniques and health care policies together with improved public and professional education can manage the need.”57 This approach, according to Callahan, is “eminently sensible and necessary,”
but “unlikely to work to the fullest extent necessary. […] Many people will continue to die in ways bad for themselves and their families.”58 The second approach, favored by
Callahan and the one explored in this dissertation, is philosophical. There are two basic questions that must be answered. First, what is the place of death in human life? Second, what is the place of death in medicine and health care?59
If death is part and parcel of the human condition, each of us will eventually die. More specifically, I will eventually die. Is there any deeper significance to attribute to this fact? Should my eventual death matter to me? Will it matter to those who will be “temporarily spared” from death's grasp? Does the fact that I will die imply something about how I should live now? Is death some kind of obstacle against which we—with the aid of medicine—ought to resist? Or does death help ground a fuller appreciation of what it means to be human?
These are difficult questions, complicated by the fact that today we are forced to make choices, many of which are ethical in nature. Is there a moral difference between withholding and withdrawing life-sustaining medical treatments? Is the foregoing of 55 Callahan, “End-of-Life Care: A Philosophical or Management Problem?” p. 75.
56 Whereas not too long ago physicians would often fail to tell patients the truth about their prognoses, today patients not only have a right to this information but are also regarded as the primary decision-makers. Patients' medical decisions are to be made in line with their values and preferences—not necessarily those of their families or physicians. Whereas in the past physicians were wedded to a kind of technological imperative—that is, the idea that if we have the medical technology we always must use it—today patients may decide whether to initiate, withhold, or withdraw aggressive, burdensome treatments, write advance directives, and designate a surrogate to make medical decisions in the case of incapacity. Whereas in the past, patients had little choice with regard to dying well, today palliative care is now well-established and hospice programs have proliferated.
57 Callahan, “End-of-Life Care: A Philosophical or Management Problem?” p. 76. 58 Ibid.
life support to be considered equivalent to suicide? May a distinction be drawn between treatments that are ordinary and treatments that are extraordinary? Must we try to prolong life in all cases?60 If so, must we embrace medical vitalism—the idea that the
first duty of the physician is always to do everything possible to prolong life and stave off death?61 Under what circumstances is it permissible to allow nature to “take its
course”?
Modern medicine, for all of its powers, cannot defeat death. This much is clear. Yet we are faced with no less than a paradigm shift in our approach to end-of-life care: today we must manage death. An explanation of what this entails in extreme cases is offered in the next section.
1.4 CONTEXTUALIZING THE PROBLEM
Although “[m]edicine cannot sanitize dying or provide perfect solutions for all clinical dilemmas,”62 recent years have witnessed remarkable effort within the palliative care
community to address severe, unrelieved suffering at the end of life. A worry has been that “terminally ill patients are needlessly suffering in the dying process.”63 One way of
combating such suffering is through the resources offered by palliative care. As a comprehensive approach for patients near the end-of-life, palliative care focuses on aggressive pain and symptom management, attention to psychological and spiritual issues, and social support for the patient and family. According to the World Health 60 As noted by classicist Darrel Amundsen, the “prolongation of life” is a distinctly modern goal of medicine and is not supported in Hippocratic or other classical texts. See Darrel W. Amundsen, “The Physician's Obligation to Prolong Life: A Medical Duty Without Classical Roots,” Hastings Center Report (1978) 8(4): 23-30. In the treatise entitled The Art, e.g., the Hippocratic physician was admonished to refuse to treat those “overmastered” by their disease, since medicine was “powerless” in such cases. This sentiment was widely embraced, according to Amundsen, in ancient Greek medicine, as well as Egyptian and Assyro-Babyonian medicine, continuing throughout much of the Middle Ages. The duty to prolong life, Amundsen believes, has roots in Francis Bacon's De augmentis scientiarum and was “probably well established by the seventeenth century” (p. 28). The “prolongation of life,” of course, is different from the preservation of health.
61 Maurizio Mori, Bioetica. 10 temi per capire e discutere (Mazzo di Rho, Edizioni Scholastiche Bruno Mondadori: 2002a), p. 97. As Mori explains (ibid.), medical vitalism is a doctrine comprised of two elements: one axiological, the other deontological. The first views biological life as always inherently “good” and death as one of the “worst” evils imaginable; the second understands the duty of the physician, first and foremost, to do everything in his or her power to prolong the life of the patient and stave off death.
62 Timothy E. Quill and Ira R. Byock, for the ACP-ASIM End-of-Life Consensus Panel, “Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids,” Annals of Internal Medicine (2000) 132(5): 408-414; p. 413.
63 Lynn A. Jansen and Daniel P. Sulmasy, “Proportionality, Terminal Suffering and the Restorative Goals of Medicine,” Theoretical Medicine (2002b) 23(4-5): 321-337; p. 321.
Organization, palliative care
is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.64
Described as “the standard of care for the dying,”65 comprehensive palliative care aims
above all to enable the patient to live well even with a terminal illness, and also to provide the opportunity for the patient and family to achieve meaningful closure. Palliative care “affirms life and regards dying as a normal process” as well as “intends neither to hasten nor to postpone death.”66 In short: the primary objective of palliative
care is to provide the best quality of remaining life to the patient as possible.
Living well with terminal illness and achieving meaningful closure with family will become nearly impossible if pain and other symptoms are not adequately controlled or managed. This might be because pain and other symptoms preclude any experience of pleasure, happiness, or other states of enjoyment; it might also be because pain and unrelieved symptoms bar us from satisfying our preferences or prevent us from realizing specific ideals.67
Despite our ability to reduce pain in a very high percentage of cases,68 one
64 World Health Organization, available at: http://www.who.int/cancer/palliative/definition/en/ (accessed 15 April 2014). Moreover, palliative care “is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications” (ibid.).
65 Timothy E. Quill, Barbara Coombs Lee, and Sally Nunn, for the University of Pennsylvania Center for Bioethics Assisted Suicide Consensus Panel, “Palliative Treatments of Last Resort: Choosing the Least Harmful Alternative,” Annals of Internal Medicine (2000) 132: 488-493; p. 488.
66 See site of the World Health Organization, above.
67 Hedonistic theories “take the ultimate good for persons to be certain kinds of conscious experiences. The particular kinds of conscious experiences are variously characterized as pleasure, happiness, or the satisfaction or enjoyment that typically accompanies the successful pursuit of our aims and desires.” Alternatively, preference satisfaction theories “take a good life for persons to consist of the satisfaction of their desires or preferences. […] [W]hat is good for persons is what they desire for its own sake […] as opposed to what they desire only as instrumental, or as means to the satisfaction of their basic desires.” In contrast to hedonistic and preference satisfaction theories are ideal theories of the good for persons, which hold the following: “at least part of a good life consists neither of any conscious experience of a broadly hedonist sort nor the satisfaction of the person's corrected preferences or desires, but instead consists of the realization of specific ideals of the person, including possession of certain virtues and character traits.” See Dan W. Brock, “The Ideal of Shared Decision Making Between Physicians and Patients.” In: Id., Life and Death, pp. 55-79; for discussion, see pp. 64-70. The above quotes are from pp. 64-67.
68 Personal communication with Ellen M. Robinson, R.N., Ph.D., Clinical Nurse Specialist in Ethics, Institute for Patient Care, Massachusetts General Hospital, Boston, MA, USA (August 2011). Personal communication with Paul R. Arnstein, R.N., Ph.D., A.C.N.S.-B.C., F.N.P.-C., F.A.A.N., Clinical Nurse Specialist for Pain Relief, Massachusetts General Hospital, Boston, MA, USA
problem concerns those rare instances in which distressing symptoms persist. There is some empirical data to support this claim. An early study of 90 patients with advanced cancer found that 80 percent described their pain as mild to moderate, and 20 percent as moderate to severe, at four weeks prior to death.69 “At various times,” this study notes,
“these patients spontaneously identified 44 different symptoms distressing enough to interfere with activity [...]”70 and the number of symptoms per patient ranged from 1 to
9.71 In the words of the authors, “[p]atients at this end of the clinical spectrum are likely
to challenge the resources of any clinician”72; they further note that “[t]he management
of multiple symptoms in patients with advanced cancer is one of the most challenging aspects of care.”73
In my own research with the Hospice Convento delle Oblate in Florence, I found that severe symptoms were common. Patients assessed themselves according to nine symptoms that are prevalent in this cancer population: pain, tiredness, nausea, depression, anxiety, drowsiness, lack of appetite, unease/discomfort, and shortness of breath. Information was rated according to the Edmonton Symptom Assessment System (ESAS).74 One hundred and twenty-one patients entered hospice during the study
period. I took note of those who recorded in their medical record one or more symptoms with a score of “5” or greater. Twenty-six patients experienced symptoms (January 11, 2012). Rady and Verheijde note that “[w]ell-trained clinicians can provide pain relief for more than 90% of the dying patients with cancer they treat.” See Mohamed Y. Rady and Joseph L. Verheijde, “Continuous Deep Sedation Until Death: Palliation or Physician-Assisted Death?” American Journal of Hospice & Palliative Medicine (2010) 27(3): 205-214; p. 206. Palliative care physician Ira Byock goes even further: “[p]hysical suffering can always be alleviated.” Ira Byock, Dying Well: Peace and Possibilities at the End of Life (New York, Riverhead Books: 1997), p. xiv; see also p. 215. Billings relates that “[a]lmost all pain faced by terminally ill people can be adequately relieved by simple, easily understood oral regimens that generally do not produce troublesome side effects.” See J. Andrew Billings, “Recent Advances: Palliative Care,” British Medical Journal (2000) 321: 555-558; pp. 555-556.
69 Nessa Coyle, Jean Adelhardt, Kathleen M. Foley, and Russell K. Portenoy, “Character of Terminal Illness in the Advanced Cancer Patient: Pain and Other Symptoms During the Last Four Weeks of Life,” Journal of Pain and Symptom Management (1990) 5(2): 83-93; p. 85.
70 Ivi, p. 86. Other than pain, the most frequent symptoms (as reported by patients) included: fatigue, generalized weakness, sleepiness, mental haziness/confusion, anxiety, weakness of legs, shortness of breath, and nausea. Other symptoms included: decreased hearing, depression, loss of appetite, inability to sleep, weakness of upper limb, cough, restlessness/irritability, swollen limb, constipation, difficulty swallowing, pulmonary congestion, dizziness, incontinence, and difficulty speaking. 71 For instance, 14% of patients experienced five symptoms in the last week before death; 21%
experienced four symptoms; and 24% experienced three symptoms (ivi, p. 89). 72 Ivi, p. 87.
73 Ivi, p. 91.
74 The assessment of symptoms is done according to the patient's opinion, rated from 0 to 10 on a numerical scale. A score of 1 means that the symptom is absent; a score of 10 means that the symptom is of the worst possible severity.
