The Challenge of Medical Decision Making Balancing Patient Autonomy and Physician Responsibility
Dr. Hull makes severalcomments conThe accompanying editorials (1,2) related to the American Thoracic Society cerning Section 1 of the Statement that (ATS) Statement on Withholding and deserve specific responses. First, he quesWithdrawing Life-sustaining Therapy (3, tions whether physicians have a respon4) highlight some of the important issues sibility to respect the request of an inthat the ATS Bioethics Task Force mem- formed and capable adult patient to withbers faced in drafting this Statement. We hold or withdraw life-sustaining therapy. welcome these as opportunities for fur- This is the central premise relating pather dialogue on these important issues. tient autonomy to foregoing life support In response to the considerations pre- and represents the patient's right to selfsented by Dr. Klocke, our intent in de- determination. Furthermore, this concept veloping this statement had two practi- of what the patient (if capable and incal goals. The first was to provide appro- formed) would have preferred, is compriate standards of medical practice monly the critical element in discussions relating to the withholding and withdraw- and conflicts involvingsurrogate decision ing of life-sustaining therapy. One of the . makers as well as in judicial decisions. most important elements within this con- This was exemplified in the precedent settext was to affirm the right of a capable ting court decisions related to Karen Ann and informed adult patient, or of an ap- Quinlan (6) and Nancy Cruzan (7, 8). propriate surrogate decision maker for Even if a capable and informed patient the patient, to have life-sustaining thera- makes a seemingly irrational decision, py withheld or withdrawn. The strength this is not a valid justification for simply of this Statement's affirmation of patient overriding the patient's decision and auautonomy as the primary basis to forego tonomy on the basis of beneficence; inlife support reflected a general percep- stead, what is needed is a thorough analtion by our task force that there were ysis and understanding of why the pawidespread inconsistencies in medical tient is making such a decision (9). What practice related to this issue, particularly initially seems like an irrational decision with regard to stopping life support, and may actually best promote that individuthat these inconsistencies arose from al patient's strongly held values, e.g., rediffering opinions by practicing physi- fusal of blood products by a Jehovah's cians about the ethical and legal bases Witness. The Statement emphasizes that, out of respect for patient autonomy, the for these activities (5). The second practice-related goal of the physician should work with the patient Statement was to support the right of in trying to achieve what is in the patient's physicians, other health care providers best interests as determined by the paand health care institutions to be able to tient and not by the physician. Second, Dr. Hull raises an important limit life-sustaining medical interventions under certain circumstances, i.e., due to issue related to the assertion by the Statefutility of the intervention or due to med- ment that there is no ethical difference ically inappropriate usage of scarce re- between withholding and withdrawing sources, even if requested by the patient life-sustaining therapy. Although he does or his or her surrogate decision maker. not disagree with this lack of ethical This issue of refusing to provide futile difference, he states that "it is a distinclife-sustaining therapy was viewed as an tion which has long been recognized in increasingly important one, particularly the law." This is simply not an accurate in the practice of critical care medicine interpretation of the current and recent when the patient's family might request state of the law (10-14). Nor is his opinthat life-sustaining interventions, once ion supported by the report of the Presistarted, be continued even after a mean- dent's Commission for the Study of Ethiingful survival is no longer possible for cal Problems in Medicine and Biomedical that patient. and Behavioral Research, which concludAM REV RESPIR DIS 1992; 145:253-254
ed that there were no moral or legal distinctions between withholding and withdrawing life-sustaining treatment (15). The same Commission also evaluated the traditional moral distinction between ordinary and extraordinary therapy to which Dr. Hull refers in his third point. In its analysis, the Commission's report found the terms to be ambiguous and of questionable value in current medical practice; it also concluded that the distinction betwen them lacked moral significance except if they were understood in terms of a patient's personal perception of how a treatment's benefits weighed against its burdens for him or her (15). Third, Dr. Hull raises the issue that Statement's emphasis on the primacy of patient autonomy may implicitly give support to a patient who wants a physician's assistance in committing suicide. This is despite the Statement explicitly noting that foregoing life support is regarded as distinct from assisted suicide, a viewthat is supported by the President's Commission cited above (15). The ATS does not endorse physician assisted suicide. The principles and procedures described by the Statement were meant to be applied to the vast majority of occurrences in clinical practice of withholding or withdrawing of life support which, we assumed, would be difficult to mistake for what is generally regarded as assisted suicide (16, 17).Because ofthis assumption, the Statement did not include the precautions proposed by Dr. Hull to guard a physician against being misused by patients to assist in their suicide. In parallel with Dr. Hull's concerns about the roles of the physician in making decisions to limit life support, our Task Force members struggled to define the appropriate balance between respect for patient autonomy and that of professional responsibility. Our goal was to reconcile the professional duty to respect patient autonomy, which has displaced medicine's tradition of paternalism over the past several decades, with the other traditional duties of the medical profession, i.e., promotion of well-being and 253
254
Setting limits on what is appropriate relief of suffering, which arise from the Hippocratic principles of beneficence medical therapy is a responsibility for and non-maleficence (18).Although our physicians that is strongly endorsed by Task Force endorsed the concept of the ATS Statement. This is most evident shared decision making (15, 19), we did in the section describing the rights of phynot intend to endorse a limited technical sicians to refuse to provide a futile medirole for the physician in this process. In cal intervention and to limit access to the Statement wenoted numerous profes- scarce health care resources, such as insional responsibilities that involve much tensive care unit beds, based on princimore than activities of a technical nature. ple of medical triage. The physician's These include making medical judgments roles in establishing these limits should and decisions, weighingbenefits and bur- be supported by the physician's health dens of alternative therapies, initiating care institution by means of written policommunication with patients regarding cies and procedures and by provision of their preferences, providing education resources for resolving conflicts by cliniand recommendations to patients, and cal ethics consultation, by internal case selecting surrogate decision makers, to review and, if necessary, by seeking judiname some of the most significant ones. cial review. In summary, the ATS Statement was Despite our affirmation of patient autonomy, westill strongly recommend that written with the intent of achieving two the physician and other health care pro- practice-related goals: (1) defining stanviders be active participants in the medi- dards of medical practice related to limiting life-sustaining therapy at the request cal decision-making process. Because of difficulties that weencoun- of a patient or surrogate decision maker tered when wefirst tried to apply the con- and (2) defining circumstances in which cept of shared decision making in the set- life-sustaining medical interventions can ting of critically ill patients receivinglife- be limited without the consent ofthe pasustaining therapy, weturned to medical tient or surrogate decision maker, e.g., decision making in the setting of outpa- futility. In its approach to the process of tient medical practice as a model (15, 19). medical decision making, the Statement Under these latter circumstances, the pro- also aimed to achieve a balance between cess of decision making commonly oc- the rights of the patient and the profescurs with more time for deliberation com- sional responsibilities of the physician pared with the situation in an intensive that respected both parties. Finally, setcare unit and without the stress associat- ting limits on medical care on the basis ed with critical illness. The medical deci- of futility is just one aspect of this insions themselves in the outpatient setting creasingly important issue in the pracare also different in that they generally tice of medicine. Limiting resources by do not relate to the imminent starting or prioritizing scarce resources, such as one stopping life-sustaining therapy. Despite or two open intensivecare beds, is already these differences we concluded that the occurring. Many more pressures from sodecision-making processes in both set- ciety and others to limit and prioritize tings were essentially congruent. For ex- usage of health care resources can be example, during shared decision making in pected in the future. How issues related both settings, the physician should use to the just allocation of limited health his or her professional judgment to ad- care resources will or should influence vise the patient concerning the medical the balance between patient and physidecision at hand and to set the limits of cian in medical decision making is an imwhat is medically appropriate in response portant question that needs careful conto the patient's problem. Likewise, in sideration and deliberations not only by both settings, the patient's role in this pro- those of us in the health care professions cess should be to assess which medical but also by our colleagues in bioethics, therapy offered within the limits set by by those in other disciplines, and by the physician, if any, best promotes his representatives from the many groups or her personal values and goals (9). that comprise our society. These same roles and responsibilities PAUL N. LANKEN, M.D. hold if a surrogate decision maker acts on behalf of a patient who has lost Chairman, ATS Bioethics Task Force decision-making capacity. Pulmonary and Critical Care Division,
EDITORIAL
Department of Medicine University of Pennsylvania School of Medicine Philadelphia, Pennsylvania References I. Klocke RA. Withholding and withdrawing lifesustaining therapy: practical considerations. Am Rev Respir Dis 1992; 145:251-252. 2. Hull RT. Withholding and withdrawing lifesustaining therapy: ethical considerations. Am Rev Respir Dis 1992; 145:249-250. 3. American Thoracic Society. Withholding and withdrawing life-sustaining therapy. Am Rev Respir Dis 1991; 144:726-31. 4. American Thoracic Society. Withholding and withdrawing life-sustaining therapy. Ann Intern Med 1991; 115:478-85. 5. Lanken PN, Asch DA, Strom BL, HansenFlaschen JH. Survey results regarding withdrawal of life-sustaining therapy by physicians practicing in adult intensive care units in U.S. hospitals (abstract). Am Rev Respir Dis 1991; 143:A469. 6. In re Quinlan, 70 N.E. 10, 355 A2d 647, cert denied 429 US 922 (1976). 7. Cruzan v, Director, Missouri Dept. of Health, no S. Ct 284 (1990). 8. Annas GJ. Nancy Cruzan and the right to die. N Engl J Med 1990; 323:670-3. 9. Brock DW, Wartman SA. When competent patients make irrational choices. N Engl J Med 1990; 322:1595-9. 10. Barber v. Superior Court, 147Cal.App.3d 1006 (1983). n, InreConroy, 98 N.J. 321,486A.2d 1209, 12225 (NJ 1985). 12. Brophy against The New England Sinai Hospital, Inc., 398 Mass. 417, 497 N. 2d 626 (1986). 13. The Hastings Center: Guidelines on the termination of life-sustaining treatment. Briarcliff Manor, NY: The Hastings Center, 1987. 14. Meisel A. The right to die. New York: John Wiley, 1989, Supplements 1990 and 1991; Section
4.4. 15. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to forego life sustaining treatment: ethical, medical and legal issues in treatment decisions. Washington, DC: U.S. Government Printing Office, 1983, 16. Wanzer SH, Federman DD, Adelstein SJ, et al. The physician's responsibility toward hopelessly ill patients. A second look. N Engl J Med 1989; 320: 844-9. 17. Singer PA, Seigler M. Euthanasia - a critique. N Engl J Med 1990; 322:1881-3. 18. Jones WHS. Selections from the Hippocratic corpus. In: Reiser SJ, Dyck AJ, Curran WJ, eds. Ethics in medicine: Historical perspectives and contemporary concerns. Cambridge, MA: MIT Press, 1977; 6-7. 19. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making health care decisions: the ethical and legal implications of informed consent in the patient-practitioner relationship. Vol. I. Washington, DC: US Government Printing Office, 1982.
Dr. Hull makes severalcomments conThe accompanying editorials (1,2) related to the American Thoracic Society cerning Section 1 of the Statement that (ATS) Statement on Withholding and deserve specific responses. First, he quesWithdrawing Life-sustaining Therapy (3, tions whether physicians have a respon4) highlight some of the important issues sibility to respect the request of an inthat the ATS Bioethics Task Force mem- formed and capable adult patient to withbers faced in drafting this Statement. We hold or withdraw life-sustaining therapy. welcome these as opportunities for fur- This is the central premise relating pather dialogue on these important issues. tient autonomy to foregoing life support In response to the considerations pre- and represents the patient's right to selfsented by Dr. Klocke, our intent in de- determination. Furthermore, this concept veloping this statement had two practi- of what the patient (if capable and incal goals. The first was to provide appro- formed) would have preferred, is compriate standards of medical practice monly the critical element in discussions relating to the withholding and withdraw- and conflicts involvingsurrogate decision ing of life-sustaining therapy. One of the . makers as well as in judicial decisions. most important elements within this con- This was exemplified in the precedent settext was to affirm the right of a capable ting court decisions related to Karen Ann and informed adult patient, or of an ap- Quinlan (6) and Nancy Cruzan (7, 8). propriate surrogate decision maker for Even if a capable and informed patient the patient, to have life-sustaining thera- makes a seemingly irrational decision, py withheld or withdrawn. The strength this is not a valid justification for simply of this Statement's affirmation of patient overriding the patient's decision and auautonomy as the primary basis to forego tonomy on the basis of beneficence; inlife support reflected a general percep- stead, what is needed is a thorough analtion by our task force that there were ysis and understanding of why the pawidespread inconsistencies in medical tient is making such a decision (9). What practice related to this issue, particularly initially seems like an irrational decision with regard to stopping life support, and may actually best promote that individuthat these inconsistencies arose from al patient's strongly held values, e.g., rediffering opinions by practicing physi- fusal of blood products by a Jehovah's cians about the ethical and legal bases Witness. The Statement emphasizes that, out of respect for patient autonomy, the for these activities (5). The second practice-related goal of the physician should work with the patient Statement was to support the right of in trying to achieve what is in the patient's physicians, other health care providers best interests as determined by the paand health care institutions to be able to tient and not by the physician. Second, Dr. Hull raises an important limit life-sustaining medical interventions under certain circumstances, i.e., due to issue related to the assertion by the Statefutility of the intervention or due to med- ment that there is no ethical difference ically inappropriate usage of scarce re- between withholding and withdrawing sources, even if requested by the patient life-sustaining therapy. Although he does or his or her surrogate decision maker. not disagree with this lack of ethical This issue of refusing to provide futile difference, he states that "it is a distinclife-sustaining therapy was viewed as an tion which has long been recognized in increasingly important one, particularly the law." This is simply not an accurate in the practice of critical care medicine interpretation of the current and recent when the patient's family might request state of the law (10-14). Nor is his opinthat life-sustaining interventions, once ion supported by the report of the Presistarted, be continued even after a mean- dent's Commission for the Study of Ethiingful survival is no longer possible for cal Problems in Medicine and Biomedical that patient. and Behavioral Research, which concludAM REV RESPIR DIS 1992; 145:253-254
ed that there were no moral or legal distinctions between withholding and withdrawing life-sustaining treatment (15). The same Commission also evaluated the traditional moral distinction between ordinary and extraordinary therapy to which Dr. Hull refers in his third point. In its analysis, the Commission's report found the terms to be ambiguous and of questionable value in current medical practice; it also concluded that the distinction betwen them lacked moral significance except if they were understood in terms of a patient's personal perception of how a treatment's benefits weighed against its burdens for him or her (15). Third, Dr. Hull raises the issue that Statement's emphasis on the primacy of patient autonomy may implicitly give support to a patient who wants a physician's assistance in committing suicide. This is despite the Statement explicitly noting that foregoing life support is regarded as distinct from assisted suicide, a viewthat is supported by the President's Commission cited above (15). The ATS does not endorse physician assisted suicide. The principles and procedures described by the Statement were meant to be applied to the vast majority of occurrences in clinical practice of withholding or withdrawing of life support which, we assumed, would be difficult to mistake for what is generally regarded as assisted suicide (16, 17).Because ofthis assumption, the Statement did not include the precautions proposed by Dr. Hull to guard a physician against being misused by patients to assist in their suicide. In parallel with Dr. Hull's concerns about the roles of the physician in making decisions to limit life support, our Task Force members struggled to define the appropriate balance between respect for patient autonomy and that of professional responsibility. Our goal was to reconcile the professional duty to respect patient autonomy, which has displaced medicine's tradition of paternalism over the past several decades, with the other traditional duties of the medical profession, i.e., promotion of well-being and 253
254
Setting limits on what is appropriate relief of suffering, which arise from the Hippocratic principles of beneficence medical therapy is a responsibility for and non-maleficence (18).Although our physicians that is strongly endorsed by Task Force endorsed the concept of the ATS Statement. This is most evident shared decision making (15, 19), we did in the section describing the rights of phynot intend to endorse a limited technical sicians to refuse to provide a futile medirole for the physician in this process. In cal intervention and to limit access to the Statement wenoted numerous profes- scarce health care resources, such as insional responsibilities that involve much tensive care unit beds, based on princimore than activities of a technical nature. ple of medical triage. The physician's These include making medical judgments roles in establishing these limits should and decisions, weighingbenefits and bur- be supported by the physician's health dens of alternative therapies, initiating care institution by means of written policommunication with patients regarding cies and procedures and by provision of their preferences, providing education resources for resolving conflicts by cliniand recommendations to patients, and cal ethics consultation, by internal case selecting surrogate decision makers, to review and, if necessary, by seeking judiname some of the most significant ones. cial review. In summary, the ATS Statement was Despite our affirmation of patient autonomy, westill strongly recommend that written with the intent of achieving two the physician and other health care pro- practice-related goals: (1) defining stanviders be active participants in the medi- dards of medical practice related to limiting life-sustaining therapy at the request cal decision-making process. Because of difficulties that weencoun- of a patient or surrogate decision maker tered when wefirst tried to apply the con- and (2) defining circumstances in which cept of shared decision making in the set- life-sustaining medical interventions can ting of critically ill patients receivinglife- be limited without the consent ofthe pasustaining therapy, weturned to medical tient or surrogate decision maker, e.g., decision making in the setting of outpa- futility. In its approach to the process of tient medical practice as a model (15, 19). medical decision making, the Statement Under these latter circumstances, the pro- also aimed to achieve a balance between cess of decision making commonly oc- the rights of the patient and the profescurs with more time for deliberation com- sional responsibilities of the physician pared with the situation in an intensive that respected both parties. Finally, setcare unit and without the stress associat- ting limits on medical care on the basis ed with critical illness. The medical deci- of futility is just one aspect of this insions themselves in the outpatient setting creasingly important issue in the pracare also different in that they generally tice of medicine. Limiting resources by do not relate to the imminent starting or prioritizing scarce resources, such as one stopping life-sustaining therapy. Despite or two open intensivecare beds, is already these differences we concluded that the occurring. Many more pressures from sodecision-making processes in both set- ciety and others to limit and prioritize tings were essentially congruent. For ex- usage of health care resources can be example, during shared decision making in pected in the future. How issues related both settings, the physician should use to the just allocation of limited health his or her professional judgment to ad- care resources will or should influence vise the patient concerning the medical the balance between patient and physidecision at hand and to set the limits of cian in medical decision making is an imwhat is medically appropriate in response portant question that needs careful conto the patient's problem. Likewise, in sideration and deliberations not only by both settings, the patient's role in this pro- those of us in the health care professions cess should be to assess which medical but also by our colleagues in bioethics, therapy offered within the limits set by by those in other disciplines, and by the physician, if any, best promotes his representatives from the many groups or her personal values and goals (9). that comprise our society. These same roles and responsibilities PAUL N. LANKEN, M.D. hold if a surrogate decision maker acts on behalf of a patient who has lost Chairman, ATS Bioethics Task Force decision-making capacity. Pulmonary and Critical Care Division,
EDITORIAL
Department of Medicine University of Pennsylvania School of Medicine Philadelphia, Pennsylvania References I. Klocke RA. Withholding and withdrawing lifesustaining therapy: practical considerations. Am Rev Respir Dis 1992; 145:251-252. 2. Hull RT. Withholding and withdrawing lifesustaining therapy: ethical considerations. Am Rev Respir Dis 1992; 145:249-250. 3. American Thoracic Society. Withholding and withdrawing life-sustaining therapy. Am Rev Respir Dis 1991; 144:726-31. 4. American Thoracic Society. Withholding and withdrawing life-sustaining therapy. Ann Intern Med 1991; 115:478-85. 5. Lanken PN, Asch DA, Strom BL, HansenFlaschen JH. Survey results regarding withdrawal of life-sustaining therapy by physicians practicing in adult intensive care units in U.S. hospitals (abstract). Am Rev Respir Dis 1991; 143:A469. 6. In re Quinlan, 70 N.E. 10, 355 A2d 647, cert denied 429 US 922 (1976). 7. Cruzan v, Director, Missouri Dept. of Health, no S. Ct 284 (1990). 8. Annas GJ. Nancy Cruzan and the right to die. N Engl J Med 1990; 323:670-3. 9. Brock DW, Wartman SA. When competent patients make irrational choices. N Engl J Med 1990; 322:1595-9. 10. Barber v. Superior Court, 147Cal.App.3d 1006 (1983). n, InreConroy, 98 N.J. 321,486A.2d 1209, 12225 (NJ 1985). 12. Brophy against The New England Sinai Hospital, Inc., 398 Mass. 417, 497 N. 2d 626 (1986). 13. The Hastings Center: Guidelines on the termination of life-sustaining treatment. Briarcliff Manor, NY: The Hastings Center, 1987. 14. Meisel A. The right to die. New York: John Wiley, 1989, Supplements 1990 and 1991; Section
4.4. 15. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to forego life sustaining treatment: ethical, medical and legal issues in treatment decisions. Washington, DC: U.S. Government Printing Office, 1983, 16. Wanzer SH, Federman DD, Adelstein SJ, et al. The physician's responsibility toward hopelessly ill patients. A second look. N Engl J Med 1989; 320: 844-9. 17. Singer PA, Seigler M. Euthanasia - a critique. N Engl J Med 1990; 322:1881-3. 18. Jones WHS. Selections from the Hippocratic corpus. In: Reiser SJ, Dyck AJ, Curran WJ, eds. Ethics in medicine: Historical perspectives and contemporary concerns. Cambridge, MA: MIT Press, 1977; 6-7. 19. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making health care decisions: the ethical and legal implications of informed consent in the patient-practitioner relationship. Vol. I. Washington, DC: US Government Printing Office, 1982.
