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The Illusion of Patient Choice in End-of-Life Decisions
SPECIAL ARTICLES
The Illusion of Patient Choice in End-of-Life Decisions Mark D. Sullivan, M.D., Ph.D.
After passage of the Patient Self-Determination Act and the Cruzan decision by the Supreme Court, honoring individual patient choice has become the primary means by which we have sought to improve the quality of life of the dying patient. However, the decision-making capacity of the dying patient is usually compromised, and advance directives have not consistently improved the dying process. We respect patient autonomy in order to respect the patient as a person; patient autonomy should be respected to the degree that it is intact. When autonomy is significantly diminished, as it usually is in dying patients, respecting autonomy reconstructed from documents or proxies may not be the best way to respect the dying person. We rather need to seek social consensus about when patients are dying, the nature of a “good death,” and when it is preferable to a longer life. (Am J Geriatr Psychiatry 2002; 10:365–372)
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hoice has become a part of the process of modern dying.1,2 Decisions to limit or withhold care occur in the clear majority of deaths today, particularly among elderly patients; 90% of patients who die in intensivecare units have life-sustaining treatments withdrawn, a dramatic increase in the past decade.3 Yet, approaching death decreases the patient’s capacity for choice. Dying patients cope with a variety of symptoms that can compromise autonomy, including pain, fatigue, nausea, and somnolence. The average age at death continues to increase, and the risk of dementia increases logarithmically with each decade. Delirium is common in dying patients, with up to 85% of advanced cancer patients meeting criteria.4 It is now estimated that as many as 30% of deaths now occur in nursing homes, where rates of debility and cognitive impairment are high. In the years after passage of the Patient SelfDetermination Act (PSDA) and the Cruzan case, advance directives (either “living wills” or designated
proxies) have been proposed as the main method to address this problem of diminished capacity in dying patients. Their purpose is to transmit patient choice, through documents or proxies, into the end-of-life situation when it is not directly available there. In addition to living wills (written documents dictating care when the writer is incompetent), the PSDA set up a proxy system: durable power of attorney for healthcare decisions. It is important to note that the operative standard for proxy decision-making has been “substituted judgment” (recreating the patient’s choice), rather than best interest (the best interest of the patient as judged by the proxy). In the Cruzan decision, the U.S. Supreme Court allowed Missouri to demand that there be “clear and convincing” evidence that Nancy Cruzan did not want life-sustaining care in her condition in order for that care to be discontinued. That is, Nancy Cruzan’s parents could discontinue her care only if she had previously made such an explicit choice.5 I will argue that this pro-
Received June 27, 2000; revised October 19, 2000; accepted February 13, 2001. From the University of Washington Dept. of Psychiatry and Behavioral Sciences, Medical History, and Ethics. Address correspondence to Mark D. Sullivan, M.D., Ph.D., Associate Professor, Psychiatry and Behavioral Sciences, Box 356560, University of Washington, Seattle, WA 98195. e-mail: [email protected] Copyright 䉷 2002 American Association for Geriatric Psychiatry
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End-of-Life Decisions duces problems by introducing the false gold standard for end-of-life care of “what the patient would choose if he or she were now autonomous.” To advance this argument, I will examine the application of advance directives to two populations of patients, the dementia patient and the critically ill hospitalized patient. In each case, advance directives strive to bring patient preference into a situation where it is not easily available. I will look at the effort to recreate “what the patient would have wanted if they were now fully lucid and competent” as illusory. I will conclude by briefly arguing that quality-of-life assessment and quality-of-care policies offer a better way to improve human dying than bolstering individual patient choice. Advance Directives in Dementia Patients In 1991, a medical student named Andrew Firlik published an account of one of his patients in JAMA.6 In “Margo’s Logo,” he describes a woman with moderate dementia (Alzheimer disease [AD]) who lives at home with the help of an attendant. Firlik visited her at home on a regular basis. Margo never called Firlik by name, though she seemed to recognize and welcome him. She enjoyed reading, but “her place in the book jumped randomly from day to day.” She liked listening to music and was happy listening to the same song repeatedly, apparently relishing it as if hearing it for the first time. She painted the same painting day after day, a series of pastel circles. Firlik summarizes as follows: despite her illness, or perhaps because of it, Margo is undeniably one of the happiest people I have known. There is something graceful about the degeneration her mind is undergoing, leaving her carefree, always cheerful. Do her problems, whatever she may perceive them to be, simply fail to make it to the worry centers of her brain? How does Margo maintain her sense of self? When a person can no longer accumulate new memories as the old rapidly fade, what remains? Who is Margo? Dementia poses many challenges to our notions of personhood. Margo is a compelling case because her bliss seems to grow as her personhood fades. In Life’s Dominion, Ronald Dworkin takes up the case of Margo to pose a pointed dilemma about end-oflife decisions. He asks us to suppose that “years ago,
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when fully competent, Margo had executed a formal document directing that if she should develop Alzheimer’s, . . . she should not receive treatment for any other serious, life-threatening disease she might contract.”7 He further asks us to suppose that Margo has developed a treatable but otherwise lethal pneumonia. He then argues that Margo’s advance directive refusing care should be honored and that she be allowed to die. Dworkin argues for respecting the past over the present Margo by distinguishing between an “evidentiary” view of autonomy (Margo knows her own interests best) and an “integrity” view of autonomy. He says, “the value of autonomy, in this [integrity] view, derives from the capacity it protects: the capacity to express one’s own character.” Self-determination does not just allow patients to protect their experiential interests; it allows self-creation, according to Dworkin. Dementia patients no longer have this capacity for self-creation that forms our “critical interests,” according to Dworkin. Dementia patients have only “experiential interests,” such as needs for comfort, companionship, and stimulation. The earlier Margo is favored as decisionmaker, not because she understands her future experiential interests best, but because only she can discern her critical interests. For Dworkin, honoring critical interests (personal choices forming a coherent life-narrative) is essential to honoring the integrity of the person. Margo’s critical interests persist, even though she can no longer appreciate them. Therefore, we must honor Margo’s advance directive refusing life-saving treatment, and let her die despite her apparent happiness. “We must judge Margo’s critical interests as she did when competent to do so.” Critical to Dworkin’s argument are his understanding of personhood and integrity. For him, the Margo with dementia is not the same person as the competent Margo—she may change her mind and overrule the competent Margo’s advance directive. Her former decision remains in force because no new decision by an autonomous person has annulled it. To protect the integrity of the intact Margo, we must respect her critical interest in charting her life’s course. Protection of the individual’s dignity by protecting the integrity of the individual’s life-plan is more important than protecting the best experiential interests of the person with dementia as we see him or her. For Dworkin, respecting autonomy is valuable in itself. Rebecca Dresser has argued against honoring Margo’s former wishes. She asks how well-informed her
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Sullivan caregivers are likely to be about her former wishes and how well informed her former wishes were. “What would we want the competent Margo to understand before she chose death over life in the event of dementia?”8 Even if the formerly-competent Margo was perfectly lucid, she could be poorly informed about her future clinical state or social situation. Did the competent Margo understand the difference between earlyand late-AD? Did she know of the possibility, however rare, of being “happily demented?” How could she know of treatments developed after her advance directive was made? Valid consent requires adequate information as well as adequate decision-making capacity. The former Margo, though fully lucid and competent, may not possess adequate information to make end-oflife decisions far in advance. An important clinical fact ignored by both Dworkin and Dresser (both lawyer–bioethicists), is that clinical decision-making is critically different from legal competence in a couple of ways. First, decision-making capacity exists on a continuum from intact to comatose. Because of the logistics of the legal process, legal competence is an all-or-nothing affair. A competent patient may have lost substantial decision-making capacity and yet be still above the legal threshold. Similarly, an incompetent patient may have areas of preserved capacity. Second, all sick patients, and certainly all dying patients, are compromised to a greater or lesser extent by pain, fatigue, nausea, somnolence, dementia, or delirium. As internist–bioethicist Eric Cassell has stressed, the perfectly autonomous patient is a bioethicist-created fiction. Neither the non-ill (who can’t really imagine fully what it is like to be seriously ill), nor the ill (whose thinking is compromised by the symptoms of their illness) are the fully autonomous patient imagined by Dworkin and Dresser. Patients’ capacity for choice is never perfect. This means (in bioethics terminology) that honoring patients’ interests rather than patients’ choices will be, in the vast majority of cases, weak paternalism, rather than strong paternalism. Even this paternalism must be measured. Patients should be given the choices of which they are capable. As Onora O’Neill has said, “only consideration of the determinate volitional and cognitive capacities and incapacities of particular patients at particular times provides a framework for working out the boundaries of permissible medical paternalism. But if capacity is not present, asking ‘What would the patient have chosen in this situation?’ provides only vague in-
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dications of medical or other treatment, and respect for absent autonomy can be, at best, vestigial.”9 These objections still do not really address Dworkin’s “integrity view” of autonomy. To address this, we must notice that he takes an extremely individualistic approach to patients’ interests and values. He ignores the fact that patient choice, even concerning critical interests, is not made in pristine isolation. Indeed, we often do not anticipate our future interests well. We don’t even always know our minds best. Friends and family help clarify our values and guide our choices. They help us decide if we are really in love or really want to go back to graduate school. They may help patients decide when they are dying. Integrity does not simply involve adherence to a life’s plan. It involves relationships of honor and respect by others.10 Individuals do not invent for themselves what constitutes dignity. Family and community do this. Dying patients place a high priority on both relieving burden to loved ones and strengthening relationships with them. They achieve this by involving loved ones in decisions about end-oflife treatment.11 From this perspective, it is an assault on the dignity of elderly patients with dementia to let them die in accord with poorly informed or poorly considered earlier wishes. It is an assault on the integrity of these persons to grant absolute value to the wishes of their former selves and no value to the wishes of their current selves. Do we really wish to deny dementia patients their humanity? Dresser urges us to be cautious: “Their loss of higher intellectual capacities ought not to exclude people like Margo from the moral community, nor from the law’s protective reach, even when the threats to their well-being emanate from their own former preferences. Margo’s connections to us remain sufficiently strong that we owe her our concern and respect in the present.”8 Advance Directives for Critically-Ill Hospitalized Patients Although the Patient Self-Determination Act and the Cruzan decision by the Supreme Court pointed toward patient choice as the way to negotiate the difficult decisions at the end of life, they did not provide for effective implementation of these ideas. In the early 1990s, the Robert Wood Johnson Foundation funded the SUPPORT Study (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments)
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End-of-Life Decisions at five centers across the country. The study included a 2-year observational phase and a 2-year randomized intervention phase, each with over 4,000 critically ill patients.12 The observational phase did document the fact that end-of-life care is poorly responsive to patients’ preferences and needs. The findings included the following: 1) only 47% of physicians knew when their patient did not want CPR; 2) half of the “DNR” orders were written within 2 days of the patient’s death; 3) 38% of patients died after 10 or more days in the ICU; 4) 50% of conscious patients had moderate-to-severe pain at the time of death, according to family members. The intervention used a nurse–facilitator/educator to improve communication between patients and physicians, especially by “eliciting and clarifying and documenting patient preferences” and “facilitating advance care planning informally or through written advance directives.” Experienced nurses made an average of 8.5 contacts with each patient, but the intervention failed to improve five targeted end-of-life outcomes: the presence and timing of DNR orders, patient–doctor communication, doctors’ knowledge of patient care preferences, number of ICU days before death, and amount of pain.13 At least 11 major categories of explanation have been offered for why this intervention failed.14 Below, I will consider data suggesting that SUPPORT’s focus on enhancing individual patient choice in the end- of-life setting contributed to its failure. The SUPPORT experience with enhancing communication and patient choice was disappointing. Implementing previously written advance directives did not substantially enhance physician–patient communication or decision-making about resuscitation. This was true for the 2 years before the PSDA and for the 2 years after the PSDA legislation passed. This led the investigators to conclude that “increasing the frequency of advance directives is unlikely to be a substantial element in improving the care of seriously ill patients.”15 Advance directives not only failed to improve the process of end-of-life care, they also failed to provide instructions that directed end-of-life care. Only 13% of advance directives went beyond naming a healthcare proxy or documenting general preferences in a standard living will format. Only one-third of these provided specific instructions about life-sustaining treatment, and about half of those were relevant to the patient’s current situation. Perhaps most disturbing to the investigators were the attitudes of the patients, themselves. Only 23% of the patients had discussed preferences about CPR
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with their physicians. More importantly, of those who had not discussed their preferences for resuscitation, 58% did not want to do so.16 A more recent randomized trial of advance-directive implementation in nursing homes was able to increase completion rates to 49% of competent patients and 78% of families of incompetent patients.17 Although these reduced costs and hospitalization rates in the intervention group, they did not increase satisfaction with care. These findings suggest that the “individual choice” model promulgated by the PSDA, Cruzan, and SUPPORT programs may not have broad-based support among the patient population. Many must feel that this is not the best way to protect their interests at the end of life. To be clear, my argument is not that patient preferences should be ignored; it is that individual patient preferences cannot be the primary means to guide us to better deaths. Another component of SUPPORT was an attempt to improve proxy decision-making. Studies done before the PSDA and SUPPORT already suggested that proxies poorly replicate patient preferences for end-of-life care. Although there is good agreement between patients and proxies in the patient’s current state of health, in hypothetical scenarios involving patient incompetence, agreement is not much better than chance.18 SUPPORT largely confirmed these findings. It found that surrogate perceptions of patient preferences were often inaccurate, particularly for those who did not want resuscitation.19 Surrogates also frequently misunderstand patient preferences for living permanently in a nursing home.20 These differences, however, do not appear to be due to different interpretations of effects of the illness, such as economic hardship, on the family.21 At least in this respect, there does not appear to be an important divergence between the best interests of the patient and that of their family members. Because this attempt to provide “substituted judgment” so often fails, some have urged a switch to a “best-interests” standard for proxy decision-makers.22 This allows the proxy to make his or her own judgment concerning patient welfare, rather than being asked to replicate what the patient would have chosen. Explorations of the context within which advance directives function has shed some light on their failure to direct end-of-life care. In-depth interviews with patients, physicians, and the nurses responsible for the intervention revealed that physicians were not unilaterally disregarding advance directives. Rather, physi-
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Sullivan cians and family came very late to seeing these critically ill patients as “absolutely, hopelessly ill,” and therefore came to implement the advance directives very late. The criteria for when a patient is “dying” thus appear to be a critical element in end-of-life care. It is important to note that this must be a matter of consensus among all the parties involved, not just the individual choice of the patient. Perhaps even more important than implicit social values about dying are those values implicit in our healthcare institutions. SUPPORT data showed that whether people died in the hospital or not is more powerfully influenced by characteristics of the local healthcare system than by patient preferences or characteristics.23 Some commentators on the SUPPORT study have interpreted its failure as evidence that individual choice is just not powerful enough—in the face of imperatives to treat and save lives implicit in our hospitals—to change end-of-life care. George Annas has said, “the only realistic way to improve the care of dying patients is to get them out of the hospital and to keep them from going to the hospital at the end of their life.”24 Joanne Lynn and other SUPPORT investigators have themselves recently concluded that “improving end-of-life care may require means other than enhanced shared decisionmaking. We suggest that to achieve better treatments and outcomes, one should consider improving practice patterns directly rather than relying on enhanced decisionmaking.”25 Yet, the patient-choice model has much appeal in our current medical culture. As Phillips et al.26 have summarized for the SUPPORT investigators, “ineffectiveness of advance directives in SUPPORT has not dampened the enthusiasm for them in policy and clinical-improvement circles.”26 “Living wills” and other advance directives distract us by making it look as if patients are in charge of the dying process, when they, in fact, are not. The challenge posed to us by dying is thereby disguised, rather than addressed. Daniel Callahan has argued, “By turning death into one more choice issue, we often do little more than deploy a clever way of avoiding the topic of death itself.”27 SUPPORT results confirmed that the model of individual choice and substituted judgment proffered by the PSDA and the Cruzan decision is not adequate to improve the care of dying patients. The SUPPORT outcome suggests that values implicit in acute healthcare systems cannot be effectively countered by bolstering individual choice. The alternative is to seek a reasonable
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social consensus about “the good death” and good care at the end of life. Quality of Life and Quality of Care for Dying Patients SUPPORT did document that the quality of care for dying patients does not meet our current standards of good care; 60% of SUPPORT patients preferred comfort care, but 10% received otherwise: 11% had a final effort at CPR when they died; 25% were on a ventilator when they died; 40% died with a feeding tube in place.28 Pain, fatigue, and dysphoria are common and burdensome symptoms in dying patients. It seems that we know enough about dying well without asking individual patients to know that these are not good quality-of-life outcomes. Yet, we shy away from clearly defining a good death and defer to individual preference. Dworkin defends this practice in no uncertain terms: Whether it is in someone’s best interests that his life end in one way rather than another depends on so much else that is special about him—about the shape and character of his life and his own sense of integrity and critical interests—that no uniform collective decision can possibly hope to serve everyone even decently . . . The critical question is whether a decent society will choose coercion or responsibility, whether it will seek to impose a collective judgment on matters of the most profound spiritual character on everyone, or whether it will allow and ask its citizens to make the most central, personality-defining judgments about their own lives for themselves.29 But is this account accurate? Are the alternatives really limited to free choice versus no choice? Cannot collective decisions be perceived as supportive rather than coercive? There is already movement away from the “independent choice” model for patients’ medical decisions, toward an “enhanced autonomy” model that allows the physician to serve as a guide to the patient. Tim Quill and Howard Brody argue, “autonomous medical choices are usually enhanced rather than undermined by the input and support of a well-informed physician.”29 Patients prefer a collaborative model for end-of-life decision-making where the physician provides recommendations as well as facts.30,31 When ill
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End-of-Life Decisions elderly patients are asked whether their advance directive or their surrogate should be honored if they disagree, over half selected the surrogate.7 Quality of dying is properly understood as a subset of quality-of-life issues. Assessment of Health-Related Quality of Life has become a standard part of clinical trials and health policy.32 It is becoming more common in oncology, geriatrics, and chronic-disease care.33 There are even attempts to bring this concept to bear on the care of dying patients.34 Yet, there are deep pockets of resistance to this application in some sectors of our society. Dworkin quotes Richard Neuhaus’s criticism of rational quality-of-life measurement in Neuhaus’s Commentary: “the question of whether life is good for the person gets things backwards. The argument of the critics is that life is the good of the person.”35 Hence, we must ask: How are we to understand the intrinsic value of life or life’s sanctity in a way that also values a good death? I cannot answer this question here. But we should not be distracted from the necessary social debate on these issues by idea that they are only matters for individual choice. Patients’ quality of life is not utterly idiosyncratic and individualized. Consistent patterns across patients can be identified. Patients prefer more mobility, less pain, and less depression. It is possible to translate this information about quality of life into guidelines about the process of care for dying patients. A statement of principles for quality care at the end of life has been endorsed by over 40 national organizations.36 Progress is indeed being made at assessing and improving the quality of care and quality of life of our oldest and sickest patients. Patients over age 85 spent less time during the last year of their lives in nursing homes and had less impairment in cognition and activities of daily living in 1993 than in 1986.37 Yet, significant challenges remain. It seems it is not possible to make direct inferences from more easily measured aspects of health status directly to quality of life38 or to the usefulness assigned to health status by the patient.39 What, beyond health status, shapes the quality of life at the end of life remains an empirical question, however. Quality of care at the end of life need not be entirely dependent on individual patient preference.40 We cannot simply turn from patients to surrogates because surrogates so often provide “substituted judgment” no better than chance. Surrogates certainly have a role in determining the best interests of the patient, but consensus standards are needed to
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make quality options available to dying patients and their families. Assessing quality of life and quality of care for dementia patients can be especially challenging. Yet, even here, progress is being made. Quality of life can be compared between patients with cancer and patients with dementia.41 Quality-of-life instruments are being developed to use with dementia patients.42 Quality-of-care domains are being defined for the care of patients with end-stage dementia.43 Futile treatments, such as tubefeeding for patients with advanced dementia, are being identified.44 Cultural diversity about the nature of a good death is a significant, but not insurmountable, challenge to the formation of consensus about quality of care. A meaningful, but spare, set of principles can be developed with the option for dissenting minorities to opt out.
CONCLUSIONS We too-readily divide the clinical world into objective medical facts and subjective patient values. The standard view asserts that physicians supply facts about diagnosis, prognosis, and therapeutic options. Patients supply the values by which these options are sorted and chosen. These medical facts are “scientific and universally true.” These patient values are “idiosyncratic and unique to the individual.” But this standard view ignores values implicit in medical training and medical institutions. It isolates the patient’s reality inside his own head. And it has not helped patients obtain a good death within medical institutions. Patient choice should certainly be honored when it can be clearly discerned and when it is possible to implement the choice. But individual patient choice is too flimsy a foundation on which to build the structures that ensure a good death for patients. We respect patient autonomy in order to respect the patient as a person. When autonomy is significantly diminished—as it usually is in dying patients—respecting autonomy reconstructed from documents or proxies may not be the best way to respect the dying person. The PSDA legislation and the SUPPORT program failed because the fully-autonomous dying patient is an illusory guide for end-of-life decision-making. Autonomy, in the classic sense, is rarely present at the end of life because of severe illness, symptoms, and impending
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Sullivan death. What is available is previous autonomy or surrogate autonomy. This is much more fallible and does not have the same a priori moral value. Attempts to respect this autonomy (through advance directives and surrogates) have failed to improve end-of-life care. So, although respect for autonomy still has moral value, end-of-life autonomy is a mirage that does not guide us well to respect for individual persons. To improve care of dying persons, we must look beyond individual choice to community values and systems of care. The hospital is not just an institution and a set of technologies, but an implicit set of values favoring acute care for the purpose of saving lives. It is more powerful than advance directives. The dominant medical culture makes it difficult for physicians to accept patient wishes to forgo treatment, at least when clinicians see some chance for successful intervention. Providing viable alternatives to a painful ICU death is not simply a matter of individual choice. We should not each need to invent for ourselves what it means to die well. Dworkin notwithstanding, we do not individually invent what “integrity” and “dignity” mean. These originate in our family and in our common culture. Most humans find integrity and dignity in connection with others, not in pristine isolation. One of the largest obstacles to developing a con-
sensus about the good death is that it is very difficult to decide when a patient is dying. Currently, the law dictates that a life should be prolonged unless there are explicit patient instructions to the contrary. Life-sustaining care could be withdrawn from Nancy Cruzan only if she had made a wish for this explicitly known. The medical imperative to save lives in the ICU may not be as strong or as universal as it once was. But no social mandate to foster good deaths has been developed to balance the mandate to save lives. When do we forsake the attempt to save a life? This is always a difficult decision for patients, families, physicians, and society. One critical element in our collective decisions about care for dying patients is defining when people are dying. We cannot develop a consensus about good dying unless we first decide what counts as dying. The decision that a patient is dying is neither a purely subjective patient choice nor a purely objective physician assessment, but is a negotiated judgment. The debates around the definition and implementation of medical futility may provide a model for these discussions.32 Dying is both very personal and very public. We each die separately, but each death is important for the community. Dignified dying is as important for the living—who will soon be dying—as it is for the dying. What form of passage can we be proud of and public about?
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End-of-Life Decisions seriously ill patients’ resuscitation preferences. Arch Fam Med 1995; 4:518–523 20. Mattimore TJ, Wenger NS, Desbiens NA, et al: Surrogate and physician understanding of patients’ preferences for living permanently in a nursing home. J Am Geriatr Soc 1997; 45:818–824 21. Covinsky KE, Landefeld CS, Teno J, et al: Is economic hardship on the families of the seriously ill associated with patient and surrogate care preferences? SUPPORT investigators. Arch Intern Med 1996; 156:1737–1741 22. Emanuel EJ, Emanuel LL: Proxy decision-making for incompetent patients. JAMA 1992; 267:2067–2071 23. Pritchard RS, Fisher ES, Teno JM, et al: Influence of patient preferences and local health system characteristics on the place of death. SUPPORT investigators: Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Geriatr Soc 1998; 46:1242–1250 24. Annas GJ: How we lie. Hastings Center Report 1995; 25:S12–S14 25. Lynn J, Arkes HR, Stevens M, et al: Rethinking fundamental assumptions: SUPPORT’s implications for future reform. J Am Geriat Soc 2000; 48:S214–S221 26. Phillips RS, Hamel MB, Covinsky KE, et al: Findings from SUPPORT and HELP: an introduction. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Hospitalized Elderly Longitudinal Project. J Am Geriatr Soc 2000; 48(suppl): S1–S5 27. Callahan D: Once again, reality: now where do we go? Hastings Center Report 1995; 25:S33–S36 28. Lynn J, Teno JM, Phillips RS, et al: Perceptions by family members of the dying experience of older and seriously ill patients. SUPPORT investigators: Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Ann Intern Med 1997; 126:97–106 29. Quill TE, Brody H: Physician recommendations and patient autonomy: finding a balance between physician power and patient choice. Ann Intern Med 1996; 125:763–769 30. Terry PB, Vettese M, Song J, et al: End-of-life decision-making: when patients and surrogates disagree. J Clin Ethics 1999; 10:286–293
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31. Johnston SC, Pfeifer MP: Patient and physician roles in end-of-life decision-making. J Gen Intern Med 1998; 13:43–45 32. AMA Council on Ethical and Judicial Affairs: Medical futility in end-of-life care. JAMA 1999; 281:937–941 33. Patrick DL, Erickson P: Health Status and Health Policy: Allocating Resources to Health Care. New York, Oxford University Press, 1993 34. Stewart AL, Teno J, Patrick DL, et al: The concept of quality of life of dying persons in the context of health care. J Pain Symptom Manage 1999; 17:93–108 35. Neuhaus R: Commentary, in Life’s Dominion. By Dworkin R. New York, Knopf, 1993, p 214 36. Lynn J: Measuring quality of care at the end of life: a statement of principles. J Am Geriatr Soc 1997; 45:526–527 37. Liao Y, McGee DL, Cao G, et al: Quality of the last year of life of older adults: 1986 vs. 1993. JAMA 2000; 283:512–518 38. Covinsky KE, Wu AW, Landefeld CS, et al: Health status versus quality of life in older patients: does the distinction matter? Am J Med 1999; 106:435–440 39. Tsevat J, Dawson NV, Wu AW, et al: Health values of hospitalized patients 80 years or older. HELP investigators: Hospitalized Elderly Longitudinal Project. JAMA 1998; 279:371–375 40. Fowler FJ Jr, Coppola KM, Teno JM: Methodological challenges for measuring quality of care at the end of life. J Pain Symptom Manage 1999; 17:114–119 41. Struttmann T, Fabro M, Romieu G, et al: Quality-of-life assessment in the old using the WHOQOL 100: differences between patients with senile dementia and patients with cancer. Int Psychogeriatr 1999; 11:273–279 42. Brod M, Stewart AL, Sands L, et al: Conceptualization and measurement of quality of life in dementia: the Dementia Quality of Life instrument (DQoL). Gerontologist 1999; 39:25–35 43. Teno JM, Landrum K, Lynn J: Defining and measuring outcomes in end-stage dementia. Alzheimer Dis Assoc Disord 1997; 11(suppl6):S25–S29 44. Finucane TE, Christmas C, Travis K: Tube-feeding in patients with advanced dementia: a review of the evidence. JAMA 1999; 282:1365–1370
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The Illusion of Patient Choice in End-of-Life Decisions Mark D. Sullivan, M.D., Ph.D.
After passage of the Patient Self-Determination Act and the Cruzan decision by the Supreme Court, honoring individual patient choice has become the primary means by which we have sought to improve the quality of life of the dying patient. However, the decision-making capacity of the dying patient is usually compromised, and advance directives have not consistently improved the dying process. We respect patient autonomy in order to respect the patient as a person; patient autonomy should be respected to the degree that it is intact. When autonomy is significantly diminished, as it usually is in dying patients, respecting autonomy reconstructed from documents or proxies may not be the best way to respect the dying person. We rather need to seek social consensus about when patients are dying, the nature of a “good death,” and when it is preferable to a longer life. (Am J Geriatr Psychiatry 2002; 10:365–372)
C
hoice has become a part of the process of modern dying.1,2 Decisions to limit or withhold care occur in the clear majority of deaths today, particularly among elderly patients; 90% of patients who die in intensivecare units have life-sustaining treatments withdrawn, a dramatic increase in the past decade.3 Yet, approaching death decreases the patient’s capacity for choice. Dying patients cope with a variety of symptoms that can compromise autonomy, including pain, fatigue, nausea, and somnolence. The average age at death continues to increase, and the risk of dementia increases logarithmically with each decade. Delirium is common in dying patients, with up to 85% of advanced cancer patients meeting criteria.4 It is now estimated that as many as 30% of deaths now occur in nursing homes, where rates of debility and cognitive impairment are high. In the years after passage of the Patient SelfDetermination Act (PSDA) and the Cruzan case, advance directives (either “living wills” or designated
proxies) have been proposed as the main method to address this problem of diminished capacity in dying patients. Their purpose is to transmit patient choice, through documents or proxies, into the end-of-life situation when it is not directly available there. In addition to living wills (written documents dictating care when the writer is incompetent), the PSDA set up a proxy system: durable power of attorney for healthcare decisions. It is important to note that the operative standard for proxy decision-making has been “substituted judgment” (recreating the patient’s choice), rather than best interest (the best interest of the patient as judged by the proxy). In the Cruzan decision, the U.S. Supreme Court allowed Missouri to demand that there be “clear and convincing” evidence that Nancy Cruzan did not want life-sustaining care in her condition in order for that care to be discontinued. That is, Nancy Cruzan’s parents could discontinue her care only if she had previously made such an explicit choice.5 I will argue that this pro-
Received June 27, 2000; revised October 19, 2000; accepted February 13, 2001. From the University of Washington Dept. of Psychiatry and Behavioral Sciences, Medical History, and Ethics. Address correspondence to Mark D. Sullivan, M.D., Ph.D., Associate Professor, Psychiatry and Behavioral Sciences, Box 356560, University of Washington, Seattle, WA 98195. e-mail: [email protected] Copyright 䉷 2002 American Association for Geriatric Psychiatry
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End-of-Life Decisions duces problems by introducing the false gold standard for end-of-life care of “what the patient would choose if he or she were now autonomous.” To advance this argument, I will examine the application of advance directives to two populations of patients, the dementia patient and the critically ill hospitalized patient. In each case, advance directives strive to bring patient preference into a situation where it is not easily available. I will look at the effort to recreate “what the patient would have wanted if they were now fully lucid and competent” as illusory. I will conclude by briefly arguing that quality-of-life assessment and quality-of-care policies offer a better way to improve human dying than bolstering individual patient choice. Advance Directives in Dementia Patients In 1991, a medical student named Andrew Firlik published an account of one of his patients in JAMA.6 In “Margo’s Logo,” he describes a woman with moderate dementia (Alzheimer disease [AD]) who lives at home with the help of an attendant. Firlik visited her at home on a regular basis. Margo never called Firlik by name, though she seemed to recognize and welcome him. She enjoyed reading, but “her place in the book jumped randomly from day to day.” She liked listening to music and was happy listening to the same song repeatedly, apparently relishing it as if hearing it for the first time. She painted the same painting day after day, a series of pastel circles. Firlik summarizes as follows: despite her illness, or perhaps because of it, Margo is undeniably one of the happiest people I have known. There is something graceful about the degeneration her mind is undergoing, leaving her carefree, always cheerful. Do her problems, whatever she may perceive them to be, simply fail to make it to the worry centers of her brain? How does Margo maintain her sense of self? When a person can no longer accumulate new memories as the old rapidly fade, what remains? Who is Margo? Dementia poses many challenges to our notions of personhood. Margo is a compelling case because her bliss seems to grow as her personhood fades. In Life’s Dominion, Ronald Dworkin takes up the case of Margo to pose a pointed dilemma about end-oflife decisions. He asks us to suppose that “years ago,
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when fully competent, Margo had executed a formal document directing that if she should develop Alzheimer’s, . . . she should not receive treatment for any other serious, life-threatening disease she might contract.”7 He further asks us to suppose that Margo has developed a treatable but otherwise lethal pneumonia. He then argues that Margo’s advance directive refusing care should be honored and that she be allowed to die. Dworkin argues for respecting the past over the present Margo by distinguishing between an “evidentiary” view of autonomy (Margo knows her own interests best) and an “integrity” view of autonomy. He says, “the value of autonomy, in this [integrity] view, derives from the capacity it protects: the capacity to express one’s own character.” Self-determination does not just allow patients to protect their experiential interests; it allows self-creation, according to Dworkin. Dementia patients no longer have this capacity for self-creation that forms our “critical interests,” according to Dworkin. Dementia patients have only “experiential interests,” such as needs for comfort, companionship, and stimulation. The earlier Margo is favored as decisionmaker, not because she understands her future experiential interests best, but because only she can discern her critical interests. For Dworkin, honoring critical interests (personal choices forming a coherent life-narrative) is essential to honoring the integrity of the person. Margo’s critical interests persist, even though she can no longer appreciate them. Therefore, we must honor Margo’s advance directive refusing life-saving treatment, and let her die despite her apparent happiness. “We must judge Margo’s critical interests as she did when competent to do so.” Critical to Dworkin’s argument are his understanding of personhood and integrity. For him, the Margo with dementia is not the same person as the competent Margo—she may change her mind and overrule the competent Margo’s advance directive. Her former decision remains in force because no new decision by an autonomous person has annulled it. To protect the integrity of the intact Margo, we must respect her critical interest in charting her life’s course. Protection of the individual’s dignity by protecting the integrity of the individual’s life-plan is more important than protecting the best experiential interests of the person with dementia as we see him or her. For Dworkin, respecting autonomy is valuable in itself. Rebecca Dresser has argued against honoring Margo’s former wishes. She asks how well-informed her
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Sullivan caregivers are likely to be about her former wishes and how well informed her former wishes were. “What would we want the competent Margo to understand before she chose death over life in the event of dementia?”8 Even if the formerly-competent Margo was perfectly lucid, she could be poorly informed about her future clinical state or social situation. Did the competent Margo understand the difference between earlyand late-AD? Did she know of the possibility, however rare, of being “happily demented?” How could she know of treatments developed after her advance directive was made? Valid consent requires adequate information as well as adequate decision-making capacity. The former Margo, though fully lucid and competent, may not possess adequate information to make end-oflife decisions far in advance. An important clinical fact ignored by both Dworkin and Dresser (both lawyer–bioethicists), is that clinical decision-making is critically different from legal competence in a couple of ways. First, decision-making capacity exists on a continuum from intact to comatose. Because of the logistics of the legal process, legal competence is an all-or-nothing affair. A competent patient may have lost substantial decision-making capacity and yet be still above the legal threshold. Similarly, an incompetent patient may have areas of preserved capacity. Second, all sick patients, and certainly all dying patients, are compromised to a greater or lesser extent by pain, fatigue, nausea, somnolence, dementia, or delirium. As internist–bioethicist Eric Cassell has stressed, the perfectly autonomous patient is a bioethicist-created fiction. Neither the non-ill (who can’t really imagine fully what it is like to be seriously ill), nor the ill (whose thinking is compromised by the symptoms of their illness) are the fully autonomous patient imagined by Dworkin and Dresser. Patients’ capacity for choice is never perfect. This means (in bioethics terminology) that honoring patients’ interests rather than patients’ choices will be, in the vast majority of cases, weak paternalism, rather than strong paternalism. Even this paternalism must be measured. Patients should be given the choices of which they are capable. As Onora O’Neill has said, “only consideration of the determinate volitional and cognitive capacities and incapacities of particular patients at particular times provides a framework for working out the boundaries of permissible medical paternalism. But if capacity is not present, asking ‘What would the patient have chosen in this situation?’ provides only vague in-
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dications of medical or other treatment, and respect for absent autonomy can be, at best, vestigial.”9 These objections still do not really address Dworkin’s “integrity view” of autonomy. To address this, we must notice that he takes an extremely individualistic approach to patients’ interests and values. He ignores the fact that patient choice, even concerning critical interests, is not made in pristine isolation. Indeed, we often do not anticipate our future interests well. We don’t even always know our minds best. Friends and family help clarify our values and guide our choices. They help us decide if we are really in love or really want to go back to graduate school. They may help patients decide when they are dying. Integrity does not simply involve adherence to a life’s plan. It involves relationships of honor and respect by others.10 Individuals do not invent for themselves what constitutes dignity. Family and community do this. Dying patients place a high priority on both relieving burden to loved ones and strengthening relationships with them. They achieve this by involving loved ones in decisions about end-oflife treatment.11 From this perspective, it is an assault on the dignity of elderly patients with dementia to let them die in accord with poorly informed or poorly considered earlier wishes. It is an assault on the integrity of these persons to grant absolute value to the wishes of their former selves and no value to the wishes of their current selves. Do we really wish to deny dementia patients their humanity? Dresser urges us to be cautious: “Their loss of higher intellectual capacities ought not to exclude people like Margo from the moral community, nor from the law’s protective reach, even when the threats to their well-being emanate from their own former preferences. Margo’s connections to us remain sufficiently strong that we owe her our concern and respect in the present.”8 Advance Directives for Critically-Ill Hospitalized Patients Although the Patient Self-Determination Act and the Cruzan decision by the Supreme Court pointed toward patient choice as the way to negotiate the difficult decisions at the end of life, they did not provide for effective implementation of these ideas. In the early 1990s, the Robert Wood Johnson Foundation funded the SUPPORT Study (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments)
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End-of-Life Decisions at five centers across the country. The study included a 2-year observational phase and a 2-year randomized intervention phase, each with over 4,000 critically ill patients.12 The observational phase did document the fact that end-of-life care is poorly responsive to patients’ preferences and needs. The findings included the following: 1) only 47% of physicians knew when their patient did not want CPR; 2) half of the “DNR” orders were written within 2 days of the patient’s death; 3) 38% of patients died after 10 or more days in the ICU; 4) 50% of conscious patients had moderate-to-severe pain at the time of death, according to family members. The intervention used a nurse–facilitator/educator to improve communication between patients and physicians, especially by “eliciting and clarifying and documenting patient preferences” and “facilitating advance care planning informally or through written advance directives.” Experienced nurses made an average of 8.5 contacts with each patient, but the intervention failed to improve five targeted end-of-life outcomes: the presence and timing of DNR orders, patient–doctor communication, doctors’ knowledge of patient care preferences, number of ICU days before death, and amount of pain.13 At least 11 major categories of explanation have been offered for why this intervention failed.14 Below, I will consider data suggesting that SUPPORT’s focus on enhancing individual patient choice in the end- of-life setting contributed to its failure. The SUPPORT experience with enhancing communication and patient choice was disappointing. Implementing previously written advance directives did not substantially enhance physician–patient communication or decision-making about resuscitation. This was true for the 2 years before the PSDA and for the 2 years after the PSDA legislation passed. This led the investigators to conclude that “increasing the frequency of advance directives is unlikely to be a substantial element in improving the care of seriously ill patients.”15 Advance directives not only failed to improve the process of end-of-life care, they also failed to provide instructions that directed end-of-life care. Only 13% of advance directives went beyond naming a healthcare proxy or documenting general preferences in a standard living will format. Only one-third of these provided specific instructions about life-sustaining treatment, and about half of those were relevant to the patient’s current situation. Perhaps most disturbing to the investigators were the attitudes of the patients, themselves. Only 23% of the patients had discussed preferences about CPR
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with their physicians. More importantly, of those who had not discussed their preferences for resuscitation, 58% did not want to do so.16 A more recent randomized trial of advance-directive implementation in nursing homes was able to increase completion rates to 49% of competent patients and 78% of families of incompetent patients.17 Although these reduced costs and hospitalization rates in the intervention group, they did not increase satisfaction with care. These findings suggest that the “individual choice” model promulgated by the PSDA, Cruzan, and SUPPORT programs may not have broad-based support among the patient population. Many must feel that this is not the best way to protect their interests at the end of life. To be clear, my argument is not that patient preferences should be ignored; it is that individual patient preferences cannot be the primary means to guide us to better deaths. Another component of SUPPORT was an attempt to improve proxy decision-making. Studies done before the PSDA and SUPPORT already suggested that proxies poorly replicate patient preferences for end-of-life care. Although there is good agreement between patients and proxies in the patient’s current state of health, in hypothetical scenarios involving patient incompetence, agreement is not much better than chance.18 SUPPORT largely confirmed these findings. It found that surrogate perceptions of patient preferences were often inaccurate, particularly for those who did not want resuscitation.19 Surrogates also frequently misunderstand patient preferences for living permanently in a nursing home.20 These differences, however, do not appear to be due to different interpretations of effects of the illness, such as economic hardship, on the family.21 At least in this respect, there does not appear to be an important divergence between the best interests of the patient and that of their family members. Because this attempt to provide “substituted judgment” so often fails, some have urged a switch to a “best-interests” standard for proxy decision-makers.22 This allows the proxy to make his or her own judgment concerning patient welfare, rather than being asked to replicate what the patient would have chosen. Explorations of the context within which advance directives function has shed some light on their failure to direct end-of-life care. In-depth interviews with patients, physicians, and the nurses responsible for the intervention revealed that physicians were not unilaterally disregarding advance directives. Rather, physi-
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Sullivan cians and family came very late to seeing these critically ill patients as “absolutely, hopelessly ill,” and therefore came to implement the advance directives very late. The criteria for when a patient is “dying” thus appear to be a critical element in end-of-life care. It is important to note that this must be a matter of consensus among all the parties involved, not just the individual choice of the patient. Perhaps even more important than implicit social values about dying are those values implicit in our healthcare institutions. SUPPORT data showed that whether people died in the hospital or not is more powerfully influenced by characteristics of the local healthcare system than by patient preferences or characteristics.23 Some commentators on the SUPPORT study have interpreted its failure as evidence that individual choice is just not powerful enough—in the face of imperatives to treat and save lives implicit in our hospitals—to change end-of-life care. George Annas has said, “the only realistic way to improve the care of dying patients is to get them out of the hospital and to keep them from going to the hospital at the end of their life.”24 Joanne Lynn and other SUPPORT investigators have themselves recently concluded that “improving end-of-life care may require means other than enhanced shared decisionmaking. We suggest that to achieve better treatments and outcomes, one should consider improving practice patterns directly rather than relying on enhanced decisionmaking.”25 Yet, the patient-choice model has much appeal in our current medical culture. As Phillips et al.26 have summarized for the SUPPORT investigators, “ineffectiveness of advance directives in SUPPORT has not dampened the enthusiasm for them in policy and clinical-improvement circles.”26 “Living wills” and other advance directives distract us by making it look as if patients are in charge of the dying process, when they, in fact, are not. The challenge posed to us by dying is thereby disguised, rather than addressed. Daniel Callahan has argued, “By turning death into one more choice issue, we often do little more than deploy a clever way of avoiding the topic of death itself.”27 SUPPORT results confirmed that the model of individual choice and substituted judgment proffered by the PSDA and the Cruzan decision is not adequate to improve the care of dying patients. The SUPPORT outcome suggests that values implicit in acute healthcare systems cannot be effectively countered by bolstering individual choice. The alternative is to seek a reasonable
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social consensus about “the good death” and good care at the end of life. Quality of Life and Quality of Care for Dying Patients SUPPORT did document that the quality of care for dying patients does not meet our current standards of good care; 60% of SUPPORT patients preferred comfort care, but 10% received otherwise: 11% had a final effort at CPR when they died; 25% were on a ventilator when they died; 40% died with a feeding tube in place.28 Pain, fatigue, and dysphoria are common and burdensome symptoms in dying patients. It seems that we know enough about dying well without asking individual patients to know that these are not good quality-of-life outcomes. Yet, we shy away from clearly defining a good death and defer to individual preference. Dworkin defends this practice in no uncertain terms: Whether it is in someone’s best interests that his life end in one way rather than another depends on so much else that is special about him—about the shape and character of his life and his own sense of integrity and critical interests—that no uniform collective decision can possibly hope to serve everyone even decently . . . The critical question is whether a decent society will choose coercion or responsibility, whether it will seek to impose a collective judgment on matters of the most profound spiritual character on everyone, or whether it will allow and ask its citizens to make the most central, personality-defining judgments about their own lives for themselves.29 But is this account accurate? Are the alternatives really limited to free choice versus no choice? Cannot collective decisions be perceived as supportive rather than coercive? There is already movement away from the “independent choice” model for patients’ medical decisions, toward an “enhanced autonomy” model that allows the physician to serve as a guide to the patient. Tim Quill and Howard Brody argue, “autonomous medical choices are usually enhanced rather than undermined by the input and support of a well-informed physician.”29 Patients prefer a collaborative model for end-of-life decision-making where the physician provides recommendations as well as facts.30,31 When ill
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End-of-Life Decisions elderly patients are asked whether their advance directive or their surrogate should be honored if they disagree, over half selected the surrogate.7 Quality of dying is properly understood as a subset of quality-of-life issues. Assessment of Health-Related Quality of Life has become a standard part of clinical trials and health policy.32 It is becoming more common in oncology, geriatrics, and chronic-disease care.33 There are even attempts to bring this concept to bear on the care of dying patients.34 Yet, there are deep pockets of resistance to this application in some sectors of our society. Dworkin quotes Richard Neuhaus’s criticism of rational quality-of-life measurement in Neuhaus’s Commentary: “the question of whether life is good for the person gets things backwards. The argument of the critics is that life is the good of the person.”35 Hence, we must ask: How are we to understand the intrinsic value of life or life’s sanctity in a way that also values a good death? I cannot answer this question here. But we should not be distracted from the necessary social debate on these issues by idea that they are only matters for individual choice. Patients’ quality of life is not utterly idiosyncratic and individualized. Consistent patterns across patients can be identified. Patients prefer more mobility, less pain, and less depression. It is possible to translate this information about quality of life into guidelines about the process of care for dying patients. A statement of principles for quality care at the end of life has been endorsed by over 40 national organizations.36 Progress is indeed being made at assessing and improving the quality of care and quality of life of our oldest and sickest patients. Patients over age 85 spent less time during the last year of their lives in nursing homes and had less impairment in cognition and activities of daily living in 1993 than in 1986.37 Yet, significant challenges remain. It seems it is not possible to make direct inferences from more easily measured aspects of health status directly to quality of life38 or to the usefulness assigned to health status by the patient.39 What, beyond health status, shapes the quality of life at the end of life remains an empirical question, however. Quality of care at the end of life need not be entirely dependent on individual patient preference.40 We cannot simply turn from patients to surrogates because surrogates so often provide “substituted judgment” no better than chance. Surrogates certainly have a role in determining the best interests of the patient, but consensus standards are needed to
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make quality options available to dying patients and their families. Assessing quality of life and quality of care for dementia patients can be especially challenging. Yet, even here, progress is being made. Quality of life can be compared between patients with cancer and patients with dementia.41 Quality-of-life instruments are being developed to use with dementia patients.42 Quality-of-care domains are being defined for the care of patients with end-stage dementia.43 Futile treatments, such as tubefeeding for patients with advanced dementia, are being identified.44 Cultural diversity about the nature of a good death is a significant, but not insurmountable, challenge to the formation of consensus about quality of care. A meaningful, but spare, set of principles can be developed with the option for dissenting minorities to opt out.
CONCLUSIONS We too-readily divide the clinical world into objective medical facts and subjective patient values. The standard view asserts that physicians supply facts about diagnosis, prognosis, and therapeutic options. Patients supply the values by which these options are sorted and chosen. These medical facts are “scientific and universally true.” These patient values are “idiosyncratic and unique to the individual.” But this standard view ignores values implicit in medical training and medical institutions. It isolates the patient’s reality inside his own head. And it has not helped patients obtain a good death within medical institutions. Patient choice should certainly be honored when it can be clearly discerned and when it is possible to implement the choice. But individual patient choice is too flimsy a foundation on which to build the structures that ensure a good death for patients. We respect patient autonomy in order to respect the patient as a person. When autonomy is significantly diminished—as it usually is in dying patients—respecting autonomy reconstructed from documents or proxies may not be the best way to respect the dying person. The PSDA legislation and the SUPPORT program failed because the fully-autonomous dying patient is an illusory guide for end-of-life decision-making. Autonomy, in the classic sense, is rarely present at the end of life because of severe illness, symptoms, and impending
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Sullivan death. What is available is previous autonomy or surrogate autonomy. This is much more fallible and does not have the same a priori moral value. Attempts to respect this autonomy (through advance directives and surrogates) have failed to improve end-of-life care. So, although respect for autonomy still has moral value, end-of-life autonomy is a mirage that does not guide us well to respect for individual persons. To improve care of dying persons, we must look beyond individual choice to community values and systems of care. The hospital is not just an institution and a set of technologies, but an implicit set of values favoring acute care for the purpose of saving lives. It is more powerful than advance directives. The dominant medical culture makes it difficult for physicians to accept patient wishes to forgo treatment, at least when clinicians see some chance for successful intervention. Providing viable alternatives to a painful ICU death is not simply a matter of individual choice. We should not each need to invent for ourselves what it means to die well. Dworkin notwithstanding, we do not individually invent what “integrity” and “dignity” mean. These originate in our family and in our common culture. Most humans find integrity and dignity in connection with others, not in pristine isolation. One of the largest obstacles to developing a con-
sensus about the good death is that it is very difficult to decide when a patient is dying. Currently, the law dictates that a life should be prolonged unless there are explicit patient instructions to the contrary. Life-sustaining care could be withdrawn from Nancy Cruzan only if she had made a wish for this explicitly known. The medical imperative to save lives in the ICU may not be as strong or as universal as it once was. But no social mandate to foster good deaths has been developed to balance the mandate to save lives. When do we forsake the attempt to save a life? This is always a difficult decision for patients, families, physicians, and society. One critical element in our collective decisions about care for dying patients is defining when people are dying. We cannot develop a consensus about good dying unless we first decide what counts as dying. The decision that a patient is dying is neither a purely subjective patient choice nor a purely objective physician assessment, but is a negotiated judgment. The debates around the definition and implementation of medical futility may provide a model for these discussions.32 Dying is both very personal and very public. We each die separately, but each death is important for the community. Dignified dying is as important for the living—who will soon be dying—as it is for the dying. What form of passage can we be proud of and public about?
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