- Email: [email protected]
Beyond futility to an ethic of care
Beyond Futility to an Ethic of Care LAWRENCEJ. SCHNEIDERMAN,M.D., La NANCY
S. JECKER,
Ph.D.,
Seattle,
Jo//a, California,
KATHY FABER-LANGENDOEN, M.D. Mlnneapo/is, Minnesota,
Washington
The medical futility debate is usually framed as a conflict between physician and patient (or surrogate) over the right to decide whether a particular life-saving treatment is futile and should not be attempted. Arguments on behalf of physician-determined futility emphasize the limits of physicians’ obligations; arguments on behalf of patient-determined futility reflect concerns over the potential erosion of recent gains in patient autonomy against medical paternalism. Underlying the arguments of those pressing for “value-free” definitions of medical futility and unlimited obligations of physicians to patients may be fears of covert rationing and patient abandonment. Often overlooked in this debate, both at the bedside and in public commentary, is the ethical duty of the physician to redirect efforts from life-saving treatments toward the conscientious pursuit of treatments that maximize comfort and dignity for the patient and the grieving family. To supplement the limited terms of the futility debate with an ethic of care, physicians should lead in advocating greater awareness of the ethics of care in doctor-nurse interactions, institutional facilities, insurance policies, and public education.
From the Departments of Family and Preventive Medicine and Medicine (US), University of California San Diego School of Medicine, La Jolla, California, the Department of Medicine and Center for Biomedical Ethics (KFL), University of Minnesota Medical School, Minneapolis, Minnesota, and the Department of Medical History and Ethics and Department of Philosophy(NSJ), University of Washington, Seattle, Washington. Dr. Schneiderman is a Visiting Scholar, University of Minnesota Medical School, Center of Biomedical Ethics. Dr. Faber-Langendoen was supported in part by an Amerlcan Cancer Society Career Development Award (92-20) and a grant from the Greenwall Foundation. Requests for reprints should be addressed to Lawrence J. Schneiderman, M.D., Family and Preventive Medicine and Medicine, Departments 0622, University of California, San Diego, 9500 Gilman Drive, La Jolla, California 92093. Manuscript submitted November 11, 1992, and accepted in revised form May 12, 1993.
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he debate is intensifying among physicians and ethicists regarding the concept of medical futility U-151. Futile medical treatment, that is, failing to achieve the goals of medicine, has been variously defined as: (1) failing to prolong life. Therefore, according to the state of Missouri, Nancy Cruzan’s maintenance in a vegetative state by enteral feeding was not futile, because it kept her alive [161; (2) failing to achieve a patient’s wishes. Therefore, according to Mr. Wanglie, his wife’s ventilator was not futile because she wanted to be maintained as long as possible in spite of her irreversible vegetative state [171; (3) failing to achieve aphysiologic effect on the body. Therefore, according to Truog et al [El, as long as one can cause air flow or blood flow in the body, cardiopulmonary resuscitation (CPR) is not futile; and (4) failing to achieve a therapeutic benefit for the patient. Therefore, according to Schneiderman et al [81, as long as the patient can appreciate and make use of such things as air flow and blood flow-which a permanently unconscious patient, for example, cannot-treatment is not futile. The definition of medical futility proposed by two of us (LJS and NSJ) and Jonsen considers the uncertainty underlying the empiric basis for medical practice and recognizes both a quantitative and qualitative component. Our definition states, “when physicians conclude (either through personal experience, experiences shared with colleagues, or consideration of published empiric data) that in the last 100 cases a medical treatment has been useless, they should regard that treatment as futile. If a treatment merely preserves permanent unconsciousness or cannot end dependence on intensive medical care, the treatment should be considered futile” [8]. The futility debate is usually framed as a conflict between physician and patient (or surrogate) over the right to decide whether a particular life-saving treatment, such as CPR or mechanical ventilation, is futile and should not be attempted [l-3, 5,6,10,11,151. Arguments on behalf of physiciandetermined futility tend to emphasize the limits of the physician’s obligations in the face of treatment demands [1,5,6,8,9,11,13,18-201. Opposing arguments reflect a number of concerns, but a particular concern is the potential erosion of recent gains 96
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in patient autonomy against medical paternalism [7,12,21-241, which has not always served the patient’s best interests [251. Overlooked in this limited perspective is a set of obligations that involve not only the physician’s duty to aggressively attack the dying process, but also to care for the patient and to seek just as aggressively to relieve suffering [261. In this paper we wish, first, to respond to arguments against the role of the physician in determining medical futility, and second, to expand the debate by drawing attention to the physician’s obligation to join the notion of futility to an ethic of care. Medical Futility and the Fear of Physician Power For advocates of patient autonomy who are particularly concerned about the corruption that can follow from power inequalities, the notion that physicians might unilaterally declare futility is particularly disturbing, and some hope that the “language of futility” will be beaten into “rapid retreat” [X5]. The concept of futility is one of the oldest in medical practice, however, and cannot be swatted away or ignored. The word “futility,” commonly used in medical discourse and cited in numerous authoritative policy statements as justifying physician nontreatment 127-301, clearly stands for a treatment that does not work-a concept that was not a matter of contention until modern technology produced so many intermediary stages between health and death that medicine is now forced to examine it in more detail. Ethical theory and medical care law, converging most recently in the United States Supreme Court Cruzan decision [31], have established the patient’s right to refuse unwanted treatment, including life-sustaining treatment. The basis for this right lies in respect for an individual’s values and choices. Advocates for patient autonomy argue that a patient should be entitled to make all treatment decisions, particularly those at the end of life. Even when hope in the power of medicine exceeds its actual scientific capabilities, patient advocates argue that patients and families are entitled to these hopes and medicine is duty-bound to serve them [7,21-231. Those who claim that the medical profession has unlimited obligations to serve its recipients’ wishes would not likely lay such claims on other professions. Let us look at the legal profession. A murderer deserves a full and vigorous defense by an attorney, but does that mean that after conviction the permanently incarcerated prisoner can demand that the attorney phone the governor every day in search of clemency? Surely at some point, February
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the lawyer would declare a limit to professional obligations to the client. Similarly, physicians who do their best but fail to prevent a patient’s persistent vegetative state should not be obligated to continue to treat that patient on a daily basis. Neither the lawyer nor the physician is obligated to seek a miracle. Although medicine willingly participated in fostering unlimited, even miraculous, expectations in the lay public, the profession must take the lead now in restoring reality. Medicine has great powers but not unlimited powers. Medicine has important obligations but not unlimited obligations. We have proposed specific, commonsense quantitative and qualitative components for a futility definition in hopes that articulating them will stimulate the medical profession to seek consensus for establishing standards of care for use by the courts and by society at large [8]. In addition, more clinical research attention should be paid to gathering and publishing empiric data that provide insights into treatments that are not only successful but also unsuccessful in achieving defined outcomes [4,6,11,32-371. We believe that futility standards, supported by empiric data, will provide the best environment for oversight, challenge, and justification whenever physicians use the term futility [38]. Medical Futility and the Illusion of Value-Free Medical Practice Those who argue that the definition of futility be limited to failure to achieve a physiologic effect on the body object to physicians making value judgments. “Physiologic futility,” Truog et al [151 claim, “understood in narrow terms, comes close to providing a value-free understanding of futility.” In our view, however, physiologic futility is a reductionistic approach that is incompatible with medicine, placing primary value on organ function and body substance. It illustrates how far medicine has strayed into the realm of biologic fragmentation. To specify narrow physiologic objectives as the goals of medical practice is not “value neutral,” but is a value choice that is about as far from the patient-centered tradition of the medical profession as it is possible to be. Truog et al [15] argue that “CPR is physiologically futile only when it is impossible to perform effective cardiac massage and ventilation (such as [in] the presence of cardiac rupture).” But on what basis, then, could a physician ever cease efforts at CPR? Arguing for stopping CPR only when effective compression or ventilation cannot be achieved is itself a value judgment (ie, a technique that does not achieve the immediate intended physiologic benefit ought not be performed), as is arguing for 1994
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stopping CPR that only maintains dependence on intensive care without the possibility of return to health. What if a surrogate insists that chest compressions be continued because, as long as blood courses through the patient’s vessels, that life is of sufficient value to be maintained? Clearly the physician not only may, but ought to cease efforts when there is no reasonable chance that spontaneous respiration and circulation can be restored. The objective of medicine is not to achieve a simple physiologic effect (in this instance, make blood pulse through the vessels), but to heal (“make whole”) the patient. Furthermore, as Tomlinson and Brody [5,91 have argued, the assertion that physicians ought to refrain from making unilateral value judgments of futility does not mesh with current medical practice. Medicine is inextricably value laden. Many have observed (and few have counterargued) that physicians are not obligated to provide useless treatments, such as antibiotics for the common cold. The physician’s judgment that antibiotics ought not be prescribed rests on two factors: first, that antibiotics are not effective for treating a cold, and second, making the patient happy by indulging a desire for antibiotics is not a legitimate goal of medicine. Similarly, if an athlete requests anabolic steroids to improve muscle strength, the physician’s duty is to respond that achieving this benefit through pharmacologic means is not an appropriate goal of medicine (not to mention that it is explicitly illegal). Thus, all medical decisions, not only futility determinations, involve value judgments, since they require choices of goals and actions. Contrary to the assertion that “[flutility has been conceptualized as an objective entity” [15], we neither claim nor seek an objective or value-free status for futility, but rather believe that any proposal from medicine will be valueladen and ultimately will have to be accepted within society’s value system. Medical Futility and the Fear of Rationing and Cost Containment Some fear that the concept of futility will become an underhanded tool to limit costly treatments in an arbitrary manner 1151. In our view, futility, rationing, and cost containment are distinct concepts, although they frequently are confused in clinical and public discourse [22]. In deciding which treatments should be made available to patients, futility determinations come before decisions regarding rationing or cost containment. Futility denotes treatments that offer no benefit or marginal benefit to a patient; futile treatments ought not be offered at all, regardless of the economic 112
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wealth of a health care system. Rationing, in contrast, always means the denial of medical services; with rationing, beneficial services are withheld from one patient or group in order to provide them to other patients or groups whose entitlement is greater 1391. Futility also differs from cost containment, with its goal of simply reducing the overall amount of resources distributed. By adhering to these distinctions, the notions of futility, rationing, and cost containment are separated and are more open to scrutiny. To establish futility, it is irrelevant whether resources are expensive or others are more entitled to care. Rather, determining futility requires rigorous scientific investigation, in which a treatment is shown to have failed so often that it is unreasonable to expect it to be successful. This determination, as with medical efficacy, rests on compelling data about medical outcomes. (Oddly enough, Truog et al. [15], in their effort to discredit the notion of futility, state: “Even in theory, statistical inferences about what might happen to groups of patients do not permit accurate predictions of what will happen to the next such patient,” thus dismissing along with futility the empiric basis for the practice of medicine.) With respect to rationing and cost containment, empiric data obviously are relevant, but the main emphasis should be on allocating treatments and limiting costs according to principles of justice arrived at through open societal debate. Fears of Abandonment: Beyond Futility to an Ethic of Care We believe that behind many misgivings about granting physicians the ethical authority to deny requests for futile treatment lie fears that patients will be abandoned. Veatch and Spicer [40], in their critique of medical futility describe a patient who pleads: “Don’t let them give up on me.” This cry poignantly reveals what is missing from the futility debate. If medical decision-making focuses solely on, whether to attempt a particular life-saving treatment, a patient who is not offered such treatment might reasonably wonder: Does the physician deem me unworthy of further attention and concern? Am I being discarded? Understandably, the patient might respond with a desperate plea to be kept alive at all costs, insisting on any treatment no matter how unlikely its chance of success or how undesirable the outcome. The crucial element often overlooked, both at the bedside and in public commentary, is the ethical duty of the physician to redirect efforts from life-saving treatments toward the aggressive pursuit of treatments that maximize comfort and 96
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dignity for the patient and for the grieving family [411. As others have noted, an ethic of care has a long-standing and prominent place in the history of medicine 142-441, summarized nicely by the 15th-century French adage, “to cure sometimes, to relieve often, to comfort always.” Unfortunately, the historical development of scientific medicine and the rising status of physicians “put physicians at odds with activities, such as patient empathy and care, that call upon abilities of engagement and identification with others” 1441. Recently, an ethic of care has been most clearly articulated in the nursing literature, where it is defined as a commitment to protecting and enhancing the patient’s dignity [45]. Caring goes beyond good intentions or simple kindness and includes psychologic, philosophic or religious, and physical components, taking into consideration the patient’s social context and specific goals. Nurses and physicians have at times used different languages to articulate their commitments to care. Thus, the nursing literature speaks largely of the psychologic and communication aspects of caring (interpersonal relationships, relieving fears and other stresses, keeping patients and families informed, and so forth) 146,471. The language of palliative care, which emphasizes relieving symptoms and easing pain, is increasingly accepted by physicians and used in acute-care hospitals, in designated palliative-care units, and in institutional and homebased hospice programs. In our experience, physicians and patients welcome discussions about not only the negative act of withholding and withdrawing treatments, but also the positive act of enhancing the last days of life. These discussions should not be confined to obtaining a simple yes or no about a particular procedure, nor should they result in physicians turning over all care to the nursing staff. Rather, they should provide strategies for maximizing comfort and dignity in the waning hours and days of life within the context of all that surrounds the patient, including family and friends. In this regard, physicians and nurses are morally obligated to use narcotics, sedatives, and other palliative measures with the same professional skill they apply to any other treatment efforts. Venipunctures, tube feedings, monitors, and other invasive technologies should be avoided unless they clearly contribute to the patient’s well-being. The call for an ethic of care when disease can no longer be cured or controlled requires strengthening collaborative efforts among health care professionals. Already, physicians and nurses have much to learn from each other, as well as from experts in hospice care and from researchers who are seeking February
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ways to improve palliative care [48-501. For example, physicians owe to hospice nurses the discovery that keeping dying patients well hydrated with intravenous fluids often adds to patient discomfort by worsening respiratory secretions and dyspnea [50,51]. Health care providers should also advocate institutional facilities that permit patients the option of dying in privacy or in the presence of loved ones and friends, rather than in the often impersonal setting of intensive care units, Making these alternatives available will require insurance companies to amend their policies to place greater emphasis on reimbursement for home-based and hospice services. An ethic of care is sometimes seen as coming into force only when cure can no longer be expected, but the French dictum was to comfort always. A view of medicine that sees care and cure as diametrically opposed values ill-serves patients who need compassion and relief from troubling symptoms even when therapy is potentially curative. When medical intervention cannot achieve the goal of curing or ameliorating disease, however, the comfort of the patient becomes the primary attainable goal. Then all medical interventions can be critically examined to see if they contribute to the patient’s comfort, and those that do not ought to be discarded. Finally, better caring for patients when medical treatment is futile calls for public education and better communication between health professionals and patients. All too often, patients or families demand futile treatment because of the symbolic message such treatment conveys-they have come to feel truly cared for only when the most modern invasive technologies are applied. Again, images of abandonment are evoked, and words such as “starvation” and “neglect” are used to describe patients who are not connected to intravenous lines, gastrostomy tubes, or ventilators. We submit that futile interventions are poor ways of promoting caring and compassion. Futile treatments make a mockery of caring by being substitutes for human communication and touching. Medicine, like all human enterprises, has its inevitable limits. While these limits may shift with advances in technology and science, it is deceptive to act as though medicine can conquer all disease, or even death itself. And it is not sufficient merely to refrain from offering or using interventions that do not work. Rather, we urge that the discussion of futility move beyond definitional debates to promote an ethic of care that means truly caring for patients even when the inevitable limits are reached. 1994
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ACKNOWLEDGMENT We are grateful Caplan.
for the helpful comments
of Albert
R. Jonsen
and Arthur
L.
REFERENCES 1. Brett AS, McCullough LB. When patients request specific interventions: defining the limits of the physician’s obligations. N Engl J Med 1986; 315: 1347-51. 2. Blackhall LJ. Must we always use CPR? N Engl J Med 1987; 317: 1281-4. 3. Youngner SJ. Who defines futility? JAMA 1988; 260: 2094-5. 4. Murphy DJ. Do-not-resuscitate orders: time for reapprarsal in long-term care institutions. JAMA 1988; 260: 2098-101. 5. Tomlinson T, Brady H. Ethics and communication in do-not-resuscitate orders. N Engl J Med 1988; 318: 43-6. 6. Lantos JD, Miles SH, Silverstein MD, Stocking CB. Survival after cardiopulmonary resuscitabon in babres of very low birth weight: is CPR futile therapy? N Engl J Med 1988; 318: 91-5. 7. Lantos JD, Singer PA, Walker RM, et al. The illusion of futility in clinical practice. Am J Med 1989; 87: 81-4. 8. Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility: Its meaning and ethical implications. Ann Intern Med 1990; 1112: 949-54. 9. Tomlinson T, Brody H. Futility and the ethics of communication. JAMA 1990; 264: 1276-80. 10. Youngner SJ. Futility in context. JAMA 1990; 264: 1295-6. 11. Faber-Langendoen K. Resuscitation of patients with metastatic cancer: is transient benefit stillfutrle? Arch Intern Med 1991; 151: 235-9. 12. Angel1 M. The case of Helga Wanglie. N Engl J Med 1991; 325: 51 l-2. 13. Miles SH. Informed demand for “non-beneficial” medical treatment. N Engl J Med 1991; 325: 512-5. 14. Jecker NS, Pearlman RA. Medical futility: who decides? Arch intern Med 1992; 152: 1140-4. 15. Truog RD, Brett AS, Frader J. The problem with futility. N Engl J Med 1992; 326: 1560-4. 16. Cruzan V. Harmon, 760 SW. 2d 408 (MO. 19881, cert. granted sub nom. Cruzan v. DirectorofMissouriDept. of Healtheta/. 106 L.Ed 2d 587,109 S. Ct. 3240 (1989). 17. In re Helga Wanglie, Fourth Judicial District (Dist. Ct., Probate Ct. Div). PX-91-283, Minnesota, Hennepin County. 18. Schneiderman LJ, Spragg RG. Ethical decisions in discontinuing mechanical ventilation. N Engl J Med 1988; 318: 984-8. 19. Hackler JC, Hiker FC. Family consent to orders not to resuscitate: reconsidering hospital policy. JAMA 1990; 264: 1281-3. 20. Jecker NS. Knowrng when to stop: the limits of medicine. Hastings Cent Rep 1991; 21: 5-8. 21. Wolf SM. Conflict between doctor and patient. Law, Med Health Care 1988; 16: 197-203. 22. Callahan D. Medical futility, medical necessity: the-problem-without-aname. Hastings Cent Rep 1991; 21: 30-5. 23. Capron AM. In re Helga Wanglie. Hastings Cent Rep 1991; 21: 26-8. 24. Scofield GR. Is consent useful when resuscitation isn’t? Hastings Cent Rep 1991; 21: 28-36. 25. Katz J. Abuse of human beings for the sake of science. In: Caplan AL, editor. In: When medicine went mad. Totowa, NJ: Humana Press, 1992: 233-70. 26. Wanzer SH, Adelstein SJ, Cranford RE, eta/. The physician’s responsibility toward hopelessly ill patients. N Engl J Med 1989; 320: 84449. 27. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to forgo life-sustaining treat-
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ment: a report on the ethical, medical and legal issues in treatment decisions. Washington: US. Government Printing Office, 1983: 650-89. 28. Task Force on Ethics of the Society of Critical Care Medicine. Consensus report on the ethics of forgoing life-sustaining treatments in the critically ill. Crit Care Med 1989; 18: 1435-90. 29. Council on Ethical and Judicial Affairs. American Medical Association guidelines for the appropriate use of do-not-resuscitate orders. JAMA 1991; 265: 1868-71. 30. American Thoracic Society. Withholding and withdrawing life-sustaining therapy. Ann Intern Med 1991; 115: 478-85. 31. Cruzan v. Director, Missouri Dept. of Health, 110 S. Ct. 2841 (1990). 32. Kellerman AL, Staves DR, Hackman BB. In-hospital resuscitation following unsuccessful pre-hospital advanced cardiac life support: “heroic efforts” or an exercise in futility? Ann Emerg Med 1988; 17: 589-94. 33. Taffet GE, Teasdale TA, Luchi RJ. In-hospital cardiopulmonary resuscitation. JAMA 1988; 260: 2069-72. 34. Murphy DJ, Murray AM, Robinson BE, Campion EW. Outcomes of cardiopulmonary resuscitation in the elderly. Ann Intern Med 1989; 111: 199-205. 35. Gray WA, Capone RJ, Most AS. Unsuccessful emergency medical resuscitation-are continued efforts in the emergency department justified? N Engl J Med 1991; 329: 1393-8. 36. Knaus WA, Wagner DP, Lynn J. Short-term mortality predictions for critically ill hospitalized adults: science and ethics. Science 1991; 254: 389-94. 37. Knaus WA, Draper EA, Wagner DP, Zimmerman JE. Prognosis in acute organ-system failure. Ann Surg 1985; 202: 685-93. 38. Schneiderman LJ, Jecker NS. Futility in practice. Arch Intern Med 1993; 153: 437-41. 39. Jecker NS, Schneiderman LJ. Futility and rationing. Am J Med 1992; 92: 189-96. 40. Veatch RM, Spicer CM. Medically futile care: the role of the physician in setting limits. Am J Law Med 1992; 18: 15-36. 41. U.S. Department of Health and Human Services, Agency for Health Care Policy and Research. Clinical practice guideline. Acute pain management: operativeor medical proceduresand trauma. Rockville, MD: Agencyfor Health Care Policy and Research, 1992. 42. Hauerwas S. Care. In: Reich WT, editor. Encyclopedia New York: Free Press, 1978: 145-50.
of bioethics.
Vol 1.
43. Nelson AR. Humanism and the art of medicine: our commitment to care. JAMA 1989; 262: 1228-30. 44. Jecker NS, Self JD. Separating care and cure: an analysis of historical and contemporary images of nursing and medicine. J Med Philos 1991; 16: 285-306. 45. Gadow SA. Nurse and patient: the caring relationshrp. In: Bishop A, Scudder J, editors. Caring, curing, coping: nurse, physician, patient relationships. Birmingham: University of Alabama Press, 1985: 31-43. 46. Ray MA. Technological caring: a new model in critical care. Dimen Crit Care Nurs 1987; 6: 166-73. 47. Cooper MC. Principle-oriented ethics and the ethic of care: a creative tension. Adv Nurs Sci 1991; 14: 22-31. 48. Coyle N. Continuity of careforthecancer patientwith chronic pain. Cancer 1989; 63: 2289-93. 49. Walsh TD. Continuing care in a medical center: the Cleveland Clinic Foundation Palliative Care Service. J Pain Symp Manage 1990; 5: 273-8. 50. Printz LA. Terminal dehydration, a compassionate treatment. Arch Intern Med 1992; 152: 697-700. 51. Schmitz P, O’Brien M. Observations on nutrition and hydration in dying cancer patients. In: Lynn J, editor. By no extraordinary means. Bloomington: Indiana University Press, 1986: 29-38.
96
S. JECKER,
Ph.D.,
Seattle,
Jo//a, California,
KATHY FABER-LANGENDOEN, M.D. Mlnneapo/is, Minnesota,
Washington
The medical futility debate is usually framed as a conflict between physician and patient (or surrogate) over the right to decide whether a particular life-saving treatment is futile and should not be attempted. Arguments on behalf of physician-determined futility emphasize the limits of physicians’ obligations; arguments on behalf of patient-determined futility reflect concerns over the potential erosion of recent gains in patient autonomy against medical paternalism. Underlying the arguments of those pressing for “value-free” definitions of medical futility and unlimited obligations of physicians to patients may be fears of covert rationing and patient abandonment. Often overlooked in this debate, both at the bedside and in public commentary, is the ethical duty of the physician to redirect efforts from life-saving treatments toward the conscientious pursuit of treatments that maximize comfort and dignity for the patient and the grieving family. To supplement the limited terms of the futility debate with an ethic of care, physicians should lead in advocating greater awareness of the ethics of care in doctor-nurse interactions, institutional facilities, insurance policies, and public education.
From the Departments of Family and Preventive Medicine and Medicine (US), University of California San Diego School of Medicine, La Jolla, California, the Department of Medicine and Center for Biomedical Ethics (KFL), University of Minnesota Medical School, Minneapolis, Minnesota, and the Department of Medical History and Ethics and Department of Philosophy(NSJ), University of Washington, Seattle, Washington. Dr. Schneiderman is a Visiting Scholar, University of Minnesota Medical School, Center of Biomedical Ethics. Dr. Faber-Langendoen was supported in part by an Amerlcan Cancer Society Career Development Award (92-20) and a grant from the Greenwall Foundation. Requests for reprints should be addressed to Lawrence J. Schneiderman, M.D., Family and Preventive Medicine and Medicine, Departments 0622, University of California, San Diego, 9500 Gilman Drive, La Jolla, California 92093. Manuscript submitted November 11, 1992, and accepted in revised form May 12, 1993.
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he debate is intensifying among physicians and ethicists regarding the concept of medical futility U-151. Futile medical treatment, that is, failing to achieve the goals of medicine, has been variously defined as: (1) failing to prolong life. Therefore, according to the state of Missouri, Nancy Cruzan’s maintenance in a vegetative state by enteral feeding was not futile, because it kept her alive [161; (2) failing to achieve a patient’s wishes. Therefore, according to Mr. Wanglie, his wife’s ventilator was not futile because she wanted to be maintained as long as possible in spite of her irreversible vegetative state [171; (3) failing to achieve aphysiologic effect on the body. Therefore, according to Truog et al [El, as long as one can cause air flow or blood flow in the body, cardiopulmonary resuscitation (CPR) is not futile; and (4) failing to achieve a therapeutic benefit for the patient. Therefore, according to Schneiderman et al [81, as long as the patient can appreciate and make use of such things as air flow and blood flow-which a permanently unconscious patient, for example, cannot-treatment is not futile. The definition of medical futility proposed by two of us (LJS and NSJ) and Jonsen considers the uncertainty underlying the empiric basis for medical practice and recognizes both a quantitative and qualitative component. Our definition states, “when physicians conclude (either through personal experience, experiences shared with colleagues, or consideration of published empiric data) that in the last 100 cases a medical treatment has been useless, they should regard that treatment as futile. If a treatment merely preserves permanent unconsciousness or cannot end dependence on intensive medical care, the treatment should be considered futile” [8]. The futility debate is usually framed as a conflict between physician and patient (or surrogate) over the right to decide whether a particular life-saving treatment, such as CPR or mechanical ventilation, is futile and should not be attempted [l-3, 5,6,10,11,151. Arguments on behalf of physiciandetermined futility tend to emphasize the limits of the physician’s obligations in the face of treatment demands [1,5,6,8,9,11,13,18-201. Opposing arguments reflect a number of concerns, but a particular concern is the potential erosion of recent gains 96
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in patient autonomy against medical paternalism [7,12,21-241, which has not always served the patient’s best interests [251. Overlooked in this limited perspective is a set of obligations that involve not only the physician’s duty to aggressively attack the dying process, but also to care for the patient and to seek just as aggressively to relieve suffering [261. In this paper we wish, first, to respond to arguments against the role of the physician in determining medical futility, and second, to expand the debate by drawing attention to the physician’s obligation to join the notion of futility to an ethic of care. Medical Futility and the Fear of Physician Power For advocates of patient autonomy who are particularly concerned about the corruption that can follow from power inequalities, the notion that physicians might unilaterally declare futility is particularly disturbing, and some hope that the “language of futility” will be beaten into “rapid retreat” [X5]. The concept of futility is one of the oldest in medical practice, however, and cannot be swatted away or ignored. The word “futility,” commonly used in medical discourse and cited in numerous authoritative policy statements as justifying physician nontreatment 127-301, clearly stands for a treatment that does not work-a concept that was not a matter of contention until modern technology produced so many intermediary stages between health and death that medicine is now forced to examine it in more detail. Ethical theory and medical care law, converging most recently in the United States Supreme Court Cruzan decision [31], have established the patient’s right to refuse unwanted treatment, including life-sustaining treatment. The basis for this right lies in respect for an individual’s values and choices. Advocates for patient autonomy argue that a patient should be entitled to make all treatment decisions, particularly those at the end of life. Even when hope in the power of medicine exceeds its actual scientific capabilities, patient advocates argue that patients and families are entitled to these hopes and medicine is duty-bound to serve them [7,21-231. Those who claim that the medical profession has unlimited obligations to serve its recipients’ wishes would not likely lay such claims on other professions. Let us look at the legal profession. A murderer deserves a full and vigorous defense by an attorney, but does that mean that after conviction the permanently incarcerated prisoner can demand that the attorney phone the governor every day in search of clemency? Surely at some point, February
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the lawyer would declare a limit to professional obligations to the client. Similarly, physicians who do their best but fail to prevent a patient’s persistent vegetative state should not be obligated to continue to treat that patient on a daily basis. Neither the lawyer nor the physician is obligated to seek a miracle. Although medicine willingly participated in fostering unlimited, even miraculous, expectations in the lay public, the profession must take the lead now in restoring reality. Medicine has great powers but not unlimited powers. Medicine has important obligations but not unlimited obligations. We have proposed specific, commonsense quantitative and qualitative components for a futility definition in hopes that articulating them will stimulate the medical profession to seek consensus for establishing standards of care for use by the courts and by society at large [8]. In addition, more clinical research attention should be paid to gathering and publishing empiric data that provide insights into treatments that are not only successful but also unsuccessful in achieving defined outcomes [4,6,11,32-371. We believe that futility standards, supported by empiric data, will provide the best environment for oversight, challenge, and justification whenever physicians use the term futility [38]. Medical Futility and the Illusion of Value-Free Medical Practice Those who argue that the definition of futility be limited to failure to achieve a physiologic effect on the body object to physicians making value judgments. “Physiologic futility,” Truog et al [151 claim, “understood in narrow terms, comes close to providing a value-free understanding of futility.” In our view, however, physiologic futility is a reductionistic approach that is incompatible with medicine, placing primary value on organ function and body substance. It illustrates how far medicine has strayed into the realm of biologic fragmentation. To specify narrow physiologic objectives as the goals of medical practice is not “value neutral,” but is a value choice that is about as far from the patient-centered tradition of the medical profession as it is possible to be. Truog et al [15] argue that “CPR is physiologically futile only when it is impossible to perform effective cardiac massage and ventilation (such as [in] the presence of cardiac rupture).” But on what basis, then, could a physician ever cease efforts at CPR? Arguing for stopping CPR only when effective compression or ventilation cannot be achieved is itself a value judgment (ie, a technique that does not achieve the immediate intended physiologic benefit ought not be performed), as is arguing for 1994
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stopping CPR that only maintains dependence on intensive care without the possibility of return to health. What if a surrogate insists that chest compressions be continued because, as long as blood courses through the patient’s vessels, that life is of sufficient value to be maintained? Clearly the physician not only may, but ought to cease efforts when there is no reasonable chance that spontaneous respiration and circulation can be restored. The objective of medicine is not to achieve a simple physiologic effect (in this instance, make blood pulse through the vessels), but to heal (“make whole”) the patient. Furthermore, as Tomlinson and Brody [5,91 have argued, the assertion that physicians ought to refrain from making unilateral value judgments of futility does not mesh with current medical practice. Medicine is inextricably value laden. Many have observed (and few have counterargued) that physicians are not obligated to provide useless treatments, such as antibiotics for the common cold. The physician’s judgment that antibiotics ought not be prescribed rests on two factors: first, that antibiotics are not effective for treating a cold, and second, making the patient happy by indulging a desire for antibiotics is not a legitimate goal of medicine. Similarly, if an athlete requests anabolic steroids to improve muscle strength, the physician’s duty is to respond that achieving this benefit through pharmacologic means is not an appropriate goal of medicine (not to mention that it is explicitly illegal). Thus, all medical decisions, not only futility determinations, involve value judgments, since they require choices of goals and actions. Contrary to the assertion that “[flutility has been conceptualized as an objective entity” [15], we neither claim nor seek an objective or value-free status for futility, but rather believe that any proposal from medicine will be valueladen and ultimately will have to be accepted within society’s value system. Medical Futility and the Fear of Rationing and Cost Containment Some fear that the concept of futility will become an underhanded tool to limit costly treatments in an arbitrary manner 1151. In our view, futility, rationing, and cost containment are distinct concepts, although they frequently are confused in clinical and public discourse [22]. In deciding which treatments should be made available to patients, futility determinations come before decisions regarding rationing or cost containment. Futility denotes treatments that offer no benefit or marginal benefit to a patient; futile treatments ought not be offered at all, regardless of the economic 112
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wealth of a health care system. Rationing, in contrast, always means the denial of medical services; with rationing, beneficial services are withheld from one patient or group in order to provide them to other patients or groups whose entitlement is greater 1391. Futility also differs from cost containment, with its goal of simply reducing the overall amount of resources distributed. By adhering to these distinctions, the notions of futility, rationing, and cost containment are separated and are more open to scrutiny. To establish futility, it is irrelevant whether resources are expensive or others are more entitled to care. Rather, determining futility requires rigorous scientific investigation, in which a treatment is shown to have failed so often that it is unreasonable to expect it to be successful. This determination, as with medical efficacy, rests on compelling data about medical outcomes. (Oddly enough, Truog et al. [15], in their effort to discredit the notion of futility, state: “Even in theory, statistical inferences about what might happen to groups of patients do not permit accurate predictions of what will happen to the next such patient,” thus dismissing along with futility the empiric basis for the practice of medicine.) With respect to rationing and cost containment, empiric data obviously are relevant, but the main emphasis should be on allocating treatments and limiting costs according to principles of justice arrived at through open societal debate. Fears of Abandonment: Beyond Futility to an Ethic of Care We believe that behind many misgivings about granting physicians the ethical authority to deny requests for futile treatment lie fears that patients will be abandoned. Veatch and Spicer [40], in their critique of medical futility describe a patient who pleads: “Don’t let them give up on me.” This cry poignantly reveals what is missing from the futility debate. If medical decision-making focuses solely on, whether to attempt a particular life-saving treatment, a patient who is not offered such treatment might reasonably wonder: Does the physician deem me unworthy of further attention and concern? Am I being discarded? Understandably, the patient might respond with a desperate plea to be kept alive at all costs, insisting on any treatment no matter how unlikely its chance of success or how undesirable the outcome. The crucial element often overlooked, both at the bedside and in public commentary, is the ethical duty of the physician to redirect efforts from life-saving treatments toward the aggressive pursuit of treatments that maximize comfort and 96
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dignity for the patient and for the grieving family [411. As others have noted, an ethic of care has a long-standing and prominent place in the history of medicine 142-441, summarized nicely by the 15th-century French adage, “to cure sometimes, to relieve often, to comfort always.” Unfortunately, the historical development of scientific medicine and the rising status of physicians “put physicians at odds with activities, such as patient empathy and care, that call upon abilities of engagement and identification with others” 1441. Recently, an ethic of care has been most clearly articulated in the nursing literature, where it is defined as a commitment to protecting and enhancing the patient’s dignity [45]. Caring goes beyond good intentions or simple kindness and includes psychologic, philosophic or religious, and physical components, taking into consideration the patient’s social context and specific goals. Nurses and physicians have at times used different languages to articulate their commitments to care. Thus, the nursing literature speaks largely of the psychologic and communication aspects of caring (interpersonal relationships, relieving fears and other stresses, keeping patients and families informed, and so forth) 146,471. The language of palliative care, which emphasizes relieving symptoms and easing pain, is increasingly accepted by physicians and used in acute-care hospitals, in designated palliative-care units, and in institutional and homebased hospice programs. In our experience, physicians and patients welcome discussions about not only the negative act of withholding and withdrawing treatments, but also the positive act of enhancing the last days of life. These discussions should not be confined to obtaining a simple yes or no about a particular procedure, nor should they result in physicians turning over all care to the nursing staff. Rather, they should provide strategies for maximizing comfort and dignity in the waning hours and days of life within the context of all that surrounds the patient, including family and friends. In this regard, physicians and nurses are morally obligated to use narcotics, sedatives, and other palliative measures with the same professional skill they apply to any other treatment efforts. Venipunctures, tube feedings, monitors, and other invasive technologies should be avoided unless they clearly contribute to the patient’s well-being. The call for an ethic of care when disease can no longer be cured or controlled requires strengthening collaborative efforts among health care professionals. Already, physicians and nurses have much to learn from each other, as well as from experts in hospice care and from researchers who are seeking February
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ways to improve palliative care [48-501. For example, physicians owe to hospice nurses the discovery that keeping dying patients well hydrated with intravenous fluids often adds to patient discomfort by worsening respiratory secretions and dyspnea [50,51]. Health care providers should also advocate institutional facilities that permit patients the option of dying in privacy or in the presence of loved ones and friends, rather than in the often impersonal setting of intensive care units, Making these alternatives available will require insurance companies to amend their policies to place greater emphasis on reimbursement for home-based and hospice services. An ethic of care is sometimes seen as coming into force only when cure can no longer be expected, but the French dictum was to comfort always. A view of medicine that sees care and cure as diametrically opposed values ill-serves patients who need compassion and relief from troubling symptoms even when therapy is potentially curative. When medical intervention cannot achieve the goal of curing or ameliorating disease, however, the comfort of the patient becomes the primary attainable goal. Then all medical interventions can be critically examined to see if they contribute to the patient’s comfort, and those that do not ought to be discarded. Finally, better caring for patients when medical treatment is futile calls for public education and better communication between health professionals and patients. All too often, patients or families demand futile treatment because of the symbolic message such treatment conveys-they have come to feel truly cared for only when the most modern invasive technologies are applied. Again, images of abandonment are evoked, and words such as “starvation” and “neglect” are used to describe patients who are not connected to intravenous lines, gastrostomy tubes, or ventilators. We submit that futile interventions are poor ways of promoting caring and compassion. Futile treatments make a mockery of caring by being substitutes for human communication and touching. Medicine, like all human enterprises, has its inevitable limits. While these limits may shift with advances in technology and science, it is deceptive to act as though medicine can conquer all disease, or even death itself. And it is not sufficient merely to refrain from offering or using interventions that do not work. Rather, we urge that the discussion of futility move beyond definitional debates to promote an ethic of care that means truly caring for patients even when the inevitable limits are reached. 1994
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ACKNOWLEDGMENT We are grateful Caplan.
for the helpful comments
of Albert
R. Jonsen
and Arthur
L.
REFERENCES 1. Brett AS, McCullough LB. When patients request specific interventions: defining the limits of the physician’s obligations. N Engl J Med 1986; 315: 1347-51. 2. Blackhall LJ. Must we always use CPR? N Engl J Med 1987; 317: 1281-4. 3. Youngner SJ. Who defines futility? JAMA 1988; 260: 2094-5. 4. Murphy DJ. Do-not-resuscitate orders: time for reapprarsal in long-term care institutions. JAMA 1988; 260: 2098-101. 5. Tomlinson T, Brady H. Ethics and communication in do-not-resuscitate orders. N Engl J Med 1988; 318: 43-6. 6. Lantos JD, Miles SH, Silverstein MD, Stocking CB. Survival after cardiopulmonary resuscitabon in babres of very low birth weight: is CPR futile therapy? N Engl J Med 1988; 318: 91-5. 7. Lantos JD, Singer PA, Walker RM, et al. The illusion of futility in clinical practice. Am J Med 1989; 87: 81-4. 8. Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility: Its meaning and ethical implications. Ann Intern Med 1990; 1112: 949-54. 9. Tomlinson T, Brody H. Futility and the ethics of communication. JAMA 1990; 264: 1276-80. 10. Youngner SJ. Futility in context. JAMA 1990; 264: 1295-6. 11. Faber-Langendoen K. Resuscitation of patients with metastatic cancer: is transient benefit stillfutrle? Arch Intern Med 1991; 151: 235-9. 12. Angel1 M. The case of Helga Wanglie. N Engl J Med 1991; 325: 51 l-2. 13. Miles SH. Informed demand for “non-beneficial” medical treatment. N Engl J Med 1991; 325: 512-5. 14. Jecker NS, Pearlman RA. Medical futility: who decides? Arch intern Med 1992; 152: 1140-4. 15. Truog RD, Brett AS, Frader J. The problem with futility. N Engl J Med 1992; 326: 1560-4. 16. Cruzan V. Harmon, 760 SW. 2d 408 (MO. 19881, cert. granted sub nom. Cruzan v. DirectorofMissouriDept. of Healtheta/. 106 L.Ed 2d 587,109 S. Ct. 3240 (1989). 17. In re Helga Wanglie, Fourth Judicial District (Dist. Ct., Probate Ct. Div). PX-91-283, Minnesota, Hennepin County. 18. Schneiderman LJ, Spragg RG. Ethical decisions in discontinuing mechanical ventilation. N Engl J Med 1988; 318: 984-8. 19. Hackler JC, Hiker FC. Family consent to orders not to resuscitate: reconsidering hospital policy. JAMA 1990; 264: 1281-3. 20. Jecker NS. Knowrng when to stop: the limits of medicine. Hastings Cent Rep 1991; 21: 5-8. 21. Wolf SM. Conflict between doctor and patient. Law, Med Health Care 1988; 16: 197-203. 22. Callahan D. Medical futility, medical necessity: the-problem-without-aname. Hastings Cent Rep 1991; 21: 30-5. 23. Capron AM. In re Helga Wanglie. Hastings Cent Rep 1991; 21: 26-8. 24. Scofield GR. Is consent useful when resuscitation isn’t? Hastings Cent Rep 1991; 21: 28-36. 25. Katz J. Abuse of human beings for the sake of science. In: Caplan AL, editor. In: When medicine went mad. Totowa, NJ: Humana Press, 1992: 233-70. 26. Wanzer SH, Adelstein SJ, Cranford RE, eta/. The physician’s responsibility toward hopelessly ill patients. N Engl J Med 1989; 320: 84449. 27. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to forgo life-sustaining treat-
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Journal
of Medicine
Volume
ment: a report on the ethical, medical and legal issues in treatment decisions. Washington: US. Government Printing Office, 1983: 650-89. 28. Task Force on Ethics of the Society of Critical Care Medicine. Consensus report on the ethics of forgoing life-sustaining treatments in the critically ill. Crit Care Med 1989; 18: 1435-90. 29. Council on Ethical and Judicial Affairs. American Medical Association guidelines for the appropriate use of do-not-resuscitate orders. JAMA 1991; 265: 1868-71. 30. American Thoracic Society. Withholding and withdrawing life-sustaining therapy. Ann Intern Med 1991; 115: 478-85. 31. Cruzan v. Director, Missouri Dept. of Health, 110 S. Ct. 2841 (1990). 32. Kellerman AL, Staves DR, Hackman BB. In-hospital resuscitation following unsuccessful pre-hospital advanced cardiac life support: “heroic efforts” or an exercise in futility? Ann Emerg Med 1988; 17: 589-94. 33. Taffet GE, Teasdale TA, Luchi RJ. In-hospital cardiopulmonary resuscitation. JAMA 1988; 260: 2069-72. 34. Murphy DJ, Murray AM, Robinson BE, Campion EW. Outcomes of cardiopulmonary resuscitation in the elderly. Ann Intern Med 1989; 111: 199-205. 35. Gray WA, Capone RJ, Most AS. Unsuccessful emergency medical resuscitation-are continued efforts in the emergency department justified? N Engl J Med 1991; 329: 1393-8. 36. Knaus WA, Wagner DP, Lynn J. Short-term mortality predictions for critically ill hospitalized adults: science and ethics. Science 1991; 254: 389-94. 37. Knaus WA, Draper EA, Wagner DP, Zimmerman JE. Prognosis in acute organ-system failure. Ann Surg 1985; 202: 685-93. 38. Schneiderman LJ, Jecker NS. Futility in practice. Arch Intern Med 1993; 153: 437-41. 39. Jecker NS, Schneiderman LJ. Futility and rationing. Am J Med 1992; 92: 189-96. 40. Veatch RM, Spicer CM. Medically futile care: the role of the physician in setting limits. Am J Law Med 1992; 18: 15-36. 41. U.S. Department of Health and Human Services, Agency for Health Care Policy and Research. Clinical practice guideline. Acute pain management: operativeor medical proceduresand trauma. Rockville, MD: Agencyfor Health Care Policy and Research, 1992. 42. Hauerwas S. Care. In: Reich WT, editor. Encyclopedia New York: Free Press, 1978: 145-50.
of bioethics.
Vol 1.
43. Nelson AR. Humanism and the art of medicine: our commitment to care. JAMA 1989; 262: 1228-30. 44. Jecker NS, Self JD. Separating care and cure: an analysis of historical and contemporary images of nursing and medicine. J Med Philos 1991; 16: 285-306. 45. Gadow SA. Nurse and patient: the caring relationshrp. In: Bishop A, Scudder J, editors. Caring, curing, coping: nurse, physician, patient relationships. Birmingham: University of Alabama Press, 1985: 31-43. 46. Ray MA. Technological caring: a new model in critical care. Dimen Crit Care Nurs 1987; 6: 166-73. 47. Cooper MC. Principle-oriented ethics and the ethic of care: a creative tension. Adv Nurs Sci 1991; 14: 22-31. 48. Coyle N. Continuity of careforthecancer patientwith chronic pain. Cancer 1989; 63: 2289-93. 49. Walsh TD. Continuing care in a medical center: the Cleveland Clinic Foundation Palliative Care Service. J Pain Symp Manage 1990; 5: 273-8. 50. Printz LA. Terminal dehydration, a compassionate treatment. Arch Intern Med 1992; 152: 697-700. 51. Schmitz P, O’Brien M. Observations on nutrition and hydration in dying cancer patients. In: Lynn J, editor. By no extraordinary means. Bloomington: Indiana University Press, 1986: 29-38.
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