Ethical Issues in the Care of Dying Patients
David Barnard
Introduction
THE QUEST FOR MORAL ORDER AMID EXISTENTIAL DISORDER
To the dying person, his doctor, however much he is trusted and regarded as a source of treatment, is no longer one with the power to cure; to the doctor, the patient has become one whose death, despite every possible effort, he is impotent to prevent. This gives rise to problems in the special professional relationship which often develops between a patient and his doctor, and besides that, they have the difficulties that face any two people trying to adjust to the fact that one of them is shortly going to die.1
This comment by John Hinton is a pointed reminder that the patient’s nearness to death places the patient and the doctor in a challenging and disturbing place, both in their relationship with each other and in their sense of personal identity. The direct encounter with death—in the guise of the death of the patient—has the power to disrupt the doctor’s relationship and communication with the dying person, throw rational decision making into confusion, and capsize carefully wrought treatment plans.
Robert Burt has commented on the “inherent unruliness of death and the persistence of individual and social ambivalence about death” as features that limit our ability to fashion social policies and practice guidelines that are free of moral ambiguity or the possibility for evil and abuse. At the conclusion of his study of the conflict-ridden policies governing abortion, the death penalty, and physician-assisted death in the United States during the last half-century, Burt writes,
Here is the paradox that we must learn to live with in regulating death: that we must teach ourselves, through our rational intellectual capacities, that our rational intellect cannot adequately comprehend, much less adequately control, death. We are no more compassionate, honorable, or intelligent than our predecessors who embraced the pursuit of rational mastery over death and were led, without acknowledgment, into unreasoned evil. We would do better to admit, as W.H. Auden acknowledged, that “Death is not understood by Death; nor You, nor I.”2
THE CONTRIBUTIONS AND LIMITATIONS OF ETHICAL ANALYSIS IN END-OF-LIFE CARE
Hinton and Burt suggest that the psychological and existential dimensions of the encounter with death destabilize the doctorpatient relationship and rational decision making. These dimensions also require that we acknowledge the limitations as well as the contributions of ethical analysis in end-of-life care. At the most general level, the discipline of ethics itself embodies the cacophony of voices, worldviews, cultural frameworks, and value systems characteristic of postmodernity. As philosophers such as McIntyre3 and Englehardt4 argue, no single, overarching standpoint or scale of values commands universal allegiance in a secular, pluralist society that is committed to the peaceable resolution of differences. Yet, without such a universally compelling standpoint, there is no means short of force to eliminate the contradictions between philosophical systems or the competing claims of multiple moral communities.
Two aspects of uncertainty more specifically related to clinical ethics near the end of life are worth particular note at the outset. Consider the commonly accepted public consensus on the ethics of end-of-life care. Its main points include the following:
Competent adults may refuse medical treatment.
Treatment refusals may include all forms of life-sustaining medical treatment, including artificially provided nutrition and hydration.
Complying with a competent adult’s informed wishes to refuse or discontinue life-sustaining treatment should be considered neither homicide nor assisted suicide.
From a moral and legal point of view, there is no difference between withholding a treatment (not starting it) and withdrawing a treatment (stopping it after it has been started), if the treatment in question is inconsistent with a competent patient’s informed preferences.
For a patient who is terminally ill and who values comfort over prolongation of life, symptom control that has as a side effect the shortening of life is morally permissible and is not the moral equivalent of active euthanasia.
Incompetent or otherwise nonautonomous people have the same rights as competent people in these matters, with their wishes expressed either in the form of an advance directive or by a person authorized to make health care decisions for them.
To call these points the “public consensus” means that they capture a broad agreement in the bioethics literature, policy statements of professional organizations, judicial decisions, and the actions of state legislatures on the matters in question.5 It is probably safe to say that these points organize the notes of nearly every medical school and nursing school lecturer on the topic of “the ethics of end-of-life care” and that they are the guiding principles brought to bear on individual cases by the vast majority of clinical ethics consultants at large in the corridors of US hospitals. And yet, it must be admitted that the consensus, although undoubtedly broad-based intellectually and influential clinically, masks substantial differences and disagreements within the health professions and the larger society. These differences encompass matters such as the relative weight to be accorded to individual autonomy and the general welfare; the validity of the distinction between, say, “killing” and “allowing to die”; or the proper characterization of artificially provided nutrition and hydration as either “medical treatment” or “basic, humane care.”
A second aspect of uncertainty stems from the potential disconnect between an individual health professional’s espoused values and ethical commitments and his or her ability to act according to those commitments in specific clinical situations. To take one of many examples, since the 1960s, there has been an enormous shift in physicians’ stated attitudes toward disclosing bad news to their patients. Whereas physicians have historically been reluctant to discuss bad diagnoses such as cancer directly with patients for fear of depressing them or eliminating hope,6 by the late 1970s, physicians who responded to surveys
overwhelmingly favored full disclosure of a cancer diagnosis to the patient.7 Patients themselves, especially in Western societies, usually want to know the truth of their cancer diagnosis, and most also want a realistic estimate of how long they are likely to live. Yet, when Baile and his colleagues8 surveyed more than 500 oncologists attending a meeting of the American Society of Clinical Oncology (ASCO), nearly one-half rated their ability to break bad news as only fair or poor, and two-thirds rated themselves as not very comfortable or uncomfortable dealing with their patients’ resulting emotions. Only half had received any training in the subject.8 These findings are consistent with the fact that although many studies report general satisfaction on the part of patients and families with the information disclosure process,9 other studies report significant dissatisfaction with the level of information or emotional support that patients receive from their doctors.10,11
overwhelmingly favored full disclosure of a cancer diagnosis to the patient.7 Patients themselves, especially in Western societies, usually want to know the truth of their cancer diagnosis, and most also want a realistic estimate of how long they are likely to live. Yet, when Baile and his colleagues8 surveyed more than 500 oncologists attending a meeting of the American Society of Clinical Oncology (ASCO), nearly one-half rated their ability to break bad news as only fair or poor, and two-thirds rated themselves as not very comfortable or uncomfortable dealing with their patients’ resulting emotions. Only half had received any training in the subject.8 These findings are consistent with the fact that although many studies report general satisfaction on the part of patients and families with the information disclosure process,9 other studies report significant dissatisfaction with the level of information or emotional support that patients receive from their doctors.10,11
With these considerations and qualifications in mind, this discussion of ethical issues in end-of-life care attempts to bring to bear the public consensus mentioned earlier on four major themes:
The transition from curative to palliative and end-of-life care
Surrogate decision making
Responding to demands for nonbeneficial treatment
Physician-assisted death
Although ethical analysis cannot pretend to eliminate moral doubt and disagreement—particularly on some of the most contested issues in these domains—some goals are quite realistic. These include (1) providing a blueprint or template for careful and systematic ethical scrutiny of a clinical situation; (2) organizing the dialogue among the various parties to an ethical dispute, thereby assuring that the concerns and perceptions of everyone with a stake in the outcome of a clinical decision are taken seriously; (3) providing a method for isolating particular sources of ethical disagreement, thereby making possible either the marshalling of additional facts or arguments to produce agreement or allowing people unable to agree to recognize their mutual good faith; (4) pointing to areas of agreement as the basis for creative problem solving that leads to decisions and actions consistent with people’s most important values; and (5) encouraging educational efforts for health professionals—especially in the realm of patient-provider communication—to bring professionals’ behavior more fully in line with their avowed values and beliefs.
The Transition from Curative to Palliative and End-of-Life Care
Patients with serious disease and their physicians usually share three goals for the patient’s care: cure or long-lasting remission, prolongation of survival, and comfort and quality of life. As prospects for the first and second goals dim with the progression of disease and the exhaustion of curative therapies, physicians have the opportunity, and the challenge, of recommending that the third goal become the main focus of the patient’s continuing care. The World Health Organization12 defines palliative care as “the active total care of patients whose disease is not amenable to curative treatment. Control of pain, of other symptoms, and of psychological, social, and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families.” J. Andrew Billings has suggested a more patient- and family-friendly definition:
Palliative care is a special service, a team approach to providing comfort and support for persons living with a lifethreatening illness and for their families. We are nurses, social workers, chaplains, and physicians who work with your current health-care team to assure that you and your family receive excellent pain control and other comfort measures, get the information you want to participate in decisions about your care, receive emotional and spiritual support and practical assistance, obtain expert help in planning for care outside the hospital, continue getting good services in the community, and overall enjoy life as best you can, given your condition. We try to coordinate and tailor a package of services that best suits your values, beliefs, wishes, and needs in whatever setting you are receiving care.13
For the doctor, arriving at the decision to focus primarily on palliative care rather than active, disease-modifying therapy can be complicated. It usually combines scientific and technical skills related to prognosis and clinical judgment; communication skills, often involving bad news and the need to respond sensitively to the patient’s emotions; and negotiation of treatment preferences. Billings’ description of the doctor’s role at this juncture is:
The patient and the family need a doctor who respects their expertise and can help them clarify and choose what they want, yet who is authoritative, helping to bring clarity and control by saying, “Let’s keep trying” or “Let’s face the music, it’s time to stop.”14
Billings’ formulation strikes a balance between the two poles that have characterized ethical debates about the doctorpatient relationship for the past several decades: the doctor as neutral respecter of patient autonomy and the doctor as authority figure under whose guidance patients suspend their own preferences in favor of the doctor’s superior insight into their best interests. Despite the strong emphasis on patient autonomy and self-determination in the bioethics literature, when patients are faced with very serious disease and complicated choices, few want to be left completely on their own to make treatment decisions. Billings’ formulation captures this reality by emphasizing both respect for the patient’s ultimate decision-making authority and the commitment not to abandon the patient by withholding the physician’s best professional judgment.
NEGOTIATING TREATMENT PREFERENCES: THE IDEAL DECISION-MAKING PROCESS
From the standpoint of ethics, treatment decisions near the end of life, as at any other juncture in health care, ought to be structured by the notion of informed consent.15 To be valid, the patient’s consent should be informed and free of duress or coercion and should reflect the patient’s genuine values and preferences. An ideal decision-making process for medical care would include the following elements:
Joint participation of doctor and patient, with additional participation of significant others of the patient’s choice
Clear and truthful communication by the physician
Clear and thoughtful deliberation by the patient
Consideration, by both doctor and patient, of medical and nonmedical factors, including
The patient’s medical condition and options for treatment (including no treatment)
The reasonable probabilities that particular goals can be achieved
The reasonably expected proportion of benefits of treatment to harmful or painful side effects
The patient’s values and life goals
The patient’s assessment of his or her quality of life and the essential elements for a positive quality of life
The patient’s tolerance for risks and uncertainty
So that, the resulting decision
Reflects a reasonable accommodation to the medical facts
Is consistent with the patient’s values and the physician’s conscience
DEPARTURES FROM THE IDEAL
In the end-of-life context, several factors are likely to complicate the ideal. They can be divided into two large groups: factors related to the uncertainty of prognosis and clinical judgment and factors related to attitudes and values of both patients and physicians. After some discussion of each of these, this section concludes with some suggestions for approaching conversations with patients that attempt to accommodate both prognostic uncertainties and emotional reactions.
Prognosis and Clinical Judgment
There are now a number of resources available that provide prognostic information across a wide range of diseases and conditions, for example, in advanced cancer,16 heart failure,17 end-stage chronic obstructive pulmonary disease,18 dementia,19 cirrhosis,20 and coma following cardiopulmonary resuscitation.21 Although the general outcomes and trajectories of diseases that are the major causes of death in the United States are known, and a typical patient’s survival (assuming accurate diagnosis) can usually be estimated within a known range of probabilities, when any particular individual will die remains an inexact prediction. Most people appreciate this, however, and the inability to give very precise predictions of a patient’s remaining life expectancy should not be a barrier to physicians’ participating in discussions with patients who want to have some realistic idea of their situation. As described further in the following text, the most important question for the physician is the level of information a patient desires to receive. The question “Doctor, how long am I going to live?” cannot be answered helpfully without some initial exploration of the meaning the question has to the patient, what has motivated the question, and the patient’s preferred level of detail.
A physician’s prognostic accuracy seems to vary inversely with the length of time the physician has known the patient. The longer the relationship, the more likely it is that the physician will overestimate the patient’s remaining time.22 Lamont and Christakis23 comment in relation to this data that a palliative medicine specialist, or some other physician with relevant expertise but with no prior relationship to the patient, is likely to be a helpful resource to the treating physician in formulating prognostic information for individual patients.
Another tendency of physicians that can diminish the usefulness of prognostic information is to provide it solely in terms of the quantity of remaining life (weeks, months, or years), without attempting to describe the quality of life the patient is likely to enjoy. Especially for people with chronic, degenerative conditions or conditions for which available disease-modifying therapies have significant side effects, their remaining quality of life is likely to be as important as a bare estimate of survival. Some issues that are likely to be of particular interest to the patient include the pace and timing of decreases in functional and/or cognitive status, pain and discomfort and the availability of the means to relieve them, loss of independence, and the expected burden on caregivers. It bears repeating that the physician’s offer to go into detail on any of these matters should be contingent on a signal from the patient that he or she does in fact want to discuss them. Some people would prefer not to have such a clear image of impending decline to look forward to, although they may wish someone in the family to have this information to be better prepared.
Patients’ Attitudes and Values
The physician’s first responsibility in preparing for a conversation about treatment preferences in the setting of end-of-life care is to assess the patient’s emotional and cognitive capacity to participate in the conversation. Among the emotional and attitudinal factors that may cause patients to depart from the ideal decision-making process are the patient’s denial of the seriousness of the disease, or the presence of depression or other psychiatric disorders, as well as other forms of cognitive impairment that may be related either to the disease or its treatment. Appropriate treatment of the underlying causes of the cognitive impairment should be the first order of business. If this is not possible, the physician should consider the availability of a surrogate decision maker, as discussed in the next section.
Other emotional factors short of psychiatric impairment can diminish the patient’s capacity to participate meaningfully in these discussions. For example, some patients may appear determined to continue pursuing active treatment for their disease because they believe other people want them to do this, not because it is their own preference. Some patients may worry about family members’ ability to cope with the patient’s worsening illness or about their future security and well-being once the patient has died. Some patients may find it hard to reject treatments because they do not want to disappoint the doctor.
On the other hand, patients may reject further treatments not because they genuinely believe this is in their best interest but because treatment refusal is a language for expressing other concerns, such as fear (of being a burden to others, of the treatment, of the process of dying), anger, exhaustion, helplessness, mistrust, or unrelieved physical symptoms. A similar phenomenon can underlie patients’ requests for physician-assisted death. Sensitive exploration of the background and motivations underlying the patient’s stated preferences is essential before the physician concludes that he or she has a clear understanding of the patient’s perspective.
Physicians’ Attitudes and Values
Several factors on the physician’s side can also cause a dialogue about treatment preferences to deviate from the ideal. The physician’s counterpart to the patient’s denial is the tendency for physicians to overestimate expected survival, especially for patients with whom they have had long-term relationships. It is often easier to perceive the deterioration in the patients of one’s colleagues than in one’s own patients.
A number of conceptual and philosophical commitments may also lead physicians to minimize or avoid open discussion with the patient about the transition from curative to palliative care. For example, medical training is primarily focused on providing the tools and skills necessary for the active investigation, diagnosis, and treatment of pathology. This instills an ideology of intervention, according to which any pathologic state or process that is potentially reversible should be reversed. To stand back and look at the “big picture”—to accompany a patient into death without investigating or treating conditions for which (at least short term) remedies are available—requires a shift in perspective that many physicians find very difficult and contrary to their professional identity.
A closely related issue, especially in academic medical centers, is the imperative of research and therapeutic innovation. From this perspective, it is precisely the point in the patient’s illness when all known effective remedies have been exhausted that presents the greatest opportunity for scientific progress. The research imperative demands that these opportunities be seized for trials of new and unproven treatments to push back the boundaries of medical power. Many patients (especially if they are of a socioeconomic status that has entitled them to regular access to health care) are themselves caught up in the ideology of medical progress, having absorbed a lifetime of exhortations from doctors and hospitals to avail themselves of regular checkups and the very latest in medical technology to ensure a longer, happier life.
The power of medical technology to forestall the time of death, especially in the intensive care unit (ICU), gives rise, in Daniel Callahan’s phrase, to “technological brinkmanship.”24
This is the idea that we can and should employ our technology for its maximum life-extending benefit and then back off just at the point—but no later—when its marginal benefits begin to be outweighed by its burdens and costs. The reality is that the point of diminishing return is almost always only discernible in retrospect, after the patient has been subjected to a period of intensive and invasive treatments to no positive end and the family is left to wonder why the patient could not have enjoyed a more peaceful death.
This is the idea that we can and should employ our technology for its maximum life-extending benefit and then back off just at the point—but no later—when its marginal benefits begin to be outweighed by its burdens and costs. The reality is that the point of diminishing return is almost always only discernible in retrospect, after the patient has been subjected to a period of intensive and invasive treatments to no positive end and the family is left to wonder why the patient could not have enjoyed a more peaceful death.
The availability of technology to forestall death creates an additional psychological pressure that derives from the apparently observable fact that the death of any individual patient (especially in the ICU) almost always results from a decision to withhold or withdraw medical treatment. In other words, although in principle, we ought to be able to take comfort from the fact that death is natural and universal—as in the ancient syllogism, “Socrates is a man; all men are mortal, therefore Socrates is mortal”—death for this patient now seems always to be optional. Its psychological reality for the doctor is that the death occurred only because he or she brought it about when he or she recommended, or acquiesced when the patient or family requested, termination of treatment.
Finally, a very common concern for physicians faced with recommending the transition from curative to palliative care (identified by nearly 60% of the respondents to Baile and colleagues’8 ASCO survey as the most difficult part of breaking bad news) is “being honest without taking away hope.” This is particularly the case when “hope” is identified with cure or significantly extended life. In fact, there are many other objects of patients’ and families’ hope that physicians almost always can help them realize; for example, comfort and freedom from pain, companionship, completion of important tasks, and security for those who will be left behind.25 Indeed, as suggested by Billings’ previously quoted definition, these concerns are precisely the focus of palliative care. Nevertheless, the strong association of “giving up all hope” with the shift to palliation from active treatment can lead physicians to dread and put off serious discussion of a patient’s end-of-life treatment preferences.
COMMUNICATION WITH PATIENTS ABOUT TREATMENT PREFERENCES NEAR THE END OF LIFE
The physician has four primary goals in the dialogue with a patient in the context of end-of-life decision making:
To learn about the patient’s preferences for receiving information and to assess the patient’s coping style when confronting threatening situations
To provide the patient with sufficient information about his or her current and projected medical situation and options for treatment and support to enable the patient to make choices that reflect his or her values and preferences
To establish rapport and trust in order to enhance the physician’s credibility as a source of reliable information and interpersonal support
To balance genuine appreciation of the clinical situation with realistic optimism to empower the patient—by mobilizing his or her adaptive capacities and social supports—to maximize his or her quality of life for as long as possible
The goal of effective information transfer, although obviously of cardinal importance, is only one of these several goals. If the others are not also satisfied, information transfer itself may not successfully occur. For this reason, most expert opinion on communication with patients about bad news recommends that the physician address the interpersonal and emotional dimensions of communication as well as the clear presentation of scientific facts.
In an extensive literature review, Penelope Schofield and her colleagues26 identified 10 major considerations for communication about the transition from curative cancer treatment to palliative care:
Preparation prior to the discussion
Eliciting the person’s understanding of the illness and preferences for information transfer
Providing information
Responding to emotional reactions
Negotiating new goals of care
Arranging for continuity of care
Addressing family concerns
Acknowledging cultural and linguistic diversity
Concluding the discussion
Documenting the discussion and appropriately informing other members of the treatment team
Baile and colleagues8 consolidate these dimensions in a six-step protocol with the mnemonic SPIKES. In their formulation, the physician’s communication with the patient proceeds as follows:
Step 1: SETTING UP the interview
Mental rehearsal, arranging for a private setting, involvement of significant others, sitting down, making eye contact, and taking steps to avoid interruption
Step 2: Assessing the patient’s PERCEPTION
Ask before telling: Ascertain what the patient knows, how they want to receive information; for example, “What have you been told about your medical condition so far?” or “What is your understanding of the reasons we did the MRI?”
Step 3: Obtaining the patient’s INVITATION
Ask before telling: Ascertain the patient’s preference for receiving information, recognizing that shunning information is a valid psychological response for some people. Asking this at the time of test ordering can help set the stage; for example, “How would you like me to give you the test results? Would you like all of the information, or just the big picture, with more time for us to talk about a treatment plan? Is there anyone else with whom you would prefer us to discuss this information?” Lamont and Christakis23 suggest, “Some people want to know everything possible about their illness and others prefer to know very little. How much about your illness do you want to know from me today?”
Step 4: Giving KNOWLEDGE and information to the patient
Give a “warning shot.” For example, “Unfortunately I’ve got some bad news to tell you… ” Start at the patient’s comprehension level, avoiding technical words (say “spread” rather than “metastasize”); give information in small chunks with pauses to check understanding; avoid phrases such as “there is nothing more we can do.”
Step 5: Addressing the patient’s EMOTIONS with empathic responses
Another mnemonic, NURSE, is helpful here.
Name the emotion: You look (sound) as if this is a real shock to you.
Understand: I cannot imagine what it is like to be so sick.
Respect: I really appreciate how you have been coping with this.
Support: I want you to know that regardless of what happens I will be there for you.
Explore: Tell me more.
Step 6: STRATEGY and SUMMARY
Ask before telling: Determine whether the patient wants to discuss future treatment plans at the present time; check the patient’s overall understanding of what has been said; present treatment options if appropriate in the moment; offer time for the patient to reflect; offer to be available for questions that may arise after the interview; schedule a follow-up appointment.
In summary, the physician-patient dialogue about the transition from active treatment to palliative care can help the physician fulfill several aspects of the ideal decision-making process. By acknowledging emotional aspects of the situation that are likely to be present on both sides, by offering patients the opportunity to receive information—or not—at their own pace, by examining one’s professional biases and assumptions that may hinder an open discussion of the patient’s circumstances, and by attention to the interpersonal as well as factual aspects of information transfer, the physician is most likely to support treatment decisions by patients that reflect their genuine values and also to strengthen the foundations for the physician’s role as a supportive companion to the patient throughout the course of the illness.
Surrogate Decision Making
At the time end-of-life treatment decisions have to be made, patients may not be able to speak clearly for themselves. They may be too sick to speak, too confused to listen to medical information or to deliberate about preferences, or completely unconscious. Typical contexts when patients lack decisional capacity near the end of life include patients suffering from dementia or other long-term cognitive impairment; patients suffering from delirium as a consequence of their disease or side effects of its treatment (e.g., metabolic derangements, drug-induced delirium, “ICU psychosis”), severely depressed patients, patients with waxing and waning mental capacity, or who give inconsistent, contradictory answers to treatment-related questions within a short period of time; postoperative patients under the influence of anesthetics or medications to promote ventilator compliance; patients suffering loss of consciousness due to stroke, cardiac arrest, or other traumatic event; and patients in coma or persistent vegetative state.
Surrogate decision making is the process by which these patients may be brought as close as possible to the ideal decision-making process described earlier. It involves the following basic elements: (1) assessment of the patient’s decisional capacity; (2) for patients deemed lacking in capacity, attempts to rule out or eliminate reversible causes; (3) identification of an appropriate surrogate; (4) clarifying the surrogate’s roles and responsibilities; and (5) anticipating, where possible, future needs for surrogate decision making through a process of advance care planning.
ASSESSING DECISIONAL CAPACITY
Decisional capacity is task-specific. Someone may be properly judged capable of making some decisions—Jell-O or custard for dessert, baseball or NASCAR on TV—and incapable of making other decisions—financial investments, whether or not to enter a nursing home, or, most relevant here, the choice of medical treatments in the setting of advanced disease. For the latter, the patient’s capacity should be assessed in terms of the following:
Understanding: Does the patient understand the meaning of the diagnostic or prognostic information provided to him or her? Can the patient restate the information in his or her own words in a way that demonstrates this understanding?
Appreciation: Does the patient appreciate the implications of the information for himself or herself? Does he or she appreciate that decisions have to be made from among alternative treatment plans and that his or her input is necessary for these decisions?Related posts:
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