!l
EDITORIAL
Ethics Consultation: Time to Focus on Patients JAMESA. TULSKY, M.D., BERNARDLO, M.D., San Francisco, California
hen patients and physicians face ethical dilemmas, asking for assistance from an expert in medical ethics may seem appealing. La Puma, Siegler, and colleagues [1,2] have argued that such consultations gather important primary data, are prompt and efficient, and provide excellent followup. Their article in this issue of the Journal extends their previous work by developing and evaluating a clinical ethics consultation service in a community hospital setting. This study raises two issues for the critical reader. First, how convincing is the evidence that ethics consultations are beneficial? Second, does this model of ethics consultation center so much on the physician that the patient may get lost in the process?
EVALUATINGAN ETHICSCONSULTATION SERVICE Evaluations of ethics consultation services have lacked scientific rigor. Well-established principles in clinical epidemiology should be applied to evaluations of ethics programs [3]. In the study by La Puma et al [2], the primary outcome measures are physician satisfaction and usage. Although these are informative, it would be more helpful to evaluate patient and surrogate satisfaction, reactions of nurses and house staff, and objective measures of dilemma resolution. By doing this, one could see whether generally accepted guidelines in medical ethics are respected in the cases under review. Although these guidelines are not gold standards, their violation would raise serious concerns. For example, in reviewing a series of consultations, one could ask whether the wishes of competent, informed patients are respected. It would be hard to argue that it is desirable for an ethics consultant to reject the choices of a competent and informed patient, even if the attending physician expresses satisfaction with such a consultation. In many wellpublicized legal cases, the physician or hospital has From the Program in Medical Ethics and the Robert Wood Johnson Clinical Scholars Program, School of Medicine, University of California, San Francisco, San Francisco, California. Requests for reprints should be addressed to James A. Tulsky, M.D., Program in Medical Ethics, School of Medicine, University of California, San Francisco, 521 Parnassus Avenue, Room C-126, San Francisco, California 94143-0903. Manuscript submitted February 12, 1992, and accepted February 12. 1992.
wanted to impose therapy over the refusal of an informed patient or family [4,5]. In many such cases, consultants who support the physicians’ position may not be giving sound ethical advice. It is useful to compare evaluating ethics consultation with evaluating new medical technologies through clinical trials. It is insufficient to show that physicians approve of the technology and find it useful in their practice. Patient outcomes and satisfaction are also consequential. It is particularly important to show that a new technology is safe and effective before seeking reimbursement by thirdparty payers. A new clinical service, such as ethics consultations, should be subjected to rigorous evaluation. For example, geriatric assessment units have been studied in randomized clinical trials. One investigation showed improvements in patient outcome measures such as functional status and likelihood of nursing home placement [6]. Evaluating ethics consultation only from the physician’s perspective provides an incomplete picture of its effectiveness and safety. Also primary among the principles of clinical epidemiology is the use of a control group. To use a well-matched control group, researchers might study ethics consultations in an institution that organizes its house staff in a firm system. In such a study, one firm would have access to the ethics consultant whereas the other would not. This design would help eliminate bias. Another principle is that outcome measures should be as objective as possible. Rating scales used for physician or patient satisfaction must be evenly weighted to allow negative responses as easily as positive ones. In the La Puma study, for example, possible responses were rated on a scale from “very helpful” to “not helpful,” with the midpoint at the positive statement of “somewhat helpful.” Physicians were not given the option to state that the consultation made the situation worse. In this report, the patient was charged for the consultation. If, using good clinical epidemiologic methods, we cannot demonstrate that patients benefit by our actions, then it is hard to justify charging them.
PHYSICIAN-CENTEREDETHICSCONSULTATION Even if ethics consultations were evaluated properly, problems would still persist. The La Puma/ April
1992
The American
Journal
of Medicine
Volume
92
343
ETHICS
CONSULTATION
/ TULSKY
AND LO
Siegler model of ethics consultation is physiciancentered. Each step of the consultation process revolves around the physician. At the beginning, the physician is the person who recognizes that an ethical dilemma exists and contacts the consultant. The consultant evaluates the patient and performs a traditional history and physical, with special attention to data that may be ethically significant. He or she then clarifies the ethical issues, synthesizes the information, and presents a number of recommendations to the primary physician, who requested the consultation. The patient is charged for the service and follow-up is provided as needed. In this model, the consultant need not discuss the ethical issues, the analysis, and the recommendations directly with the patient or the patient’s surrogates, even though they have the greatest stake in the outcome. The consultant’s focus on the referring physician may lead to several problems. Limited Access to Consultations In the medical staff model of consultation, may nurses, patients, or their surrogates request a consultation? In the study by La Puma et al, all of the consultations were requested by physicians. If only doctors can contact the ethics consultant, many unresolved ethical issues may never be discussed. Ethical dilemmas often involve disagreements between the physician and patient or between the attending physician and other health care workers. Even if the attending physician does not perceive an ethical problem, the patient, family, or nursing staff may desire the assistance of an ethics consultant. Of note, in this and other studies, few requests for ethics consultation originate from nonmedical or family practice services [7]. Particularly striking is the apparent under-utilization of ethics consultation by surgical services. Would more ethical dilemmas be discussed if access to the ethicist were increased? Threats to Patient Autonomy The major thrust in medical ethics over the past two decades has been to promote patient autonomy. The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research advocated shared medical decision-making by doctors and patients [8]. Respecting the autonomy of patients requires more than granting them final authority over any decisions affecting their bodies. Patients also need to be involved in ongoing discussions of decisions that affect them sq profoundly and personally. As patients act as autonomous agents, they force physicians to engage in dialogues that usually improve outcomes and increase everyone’s satisfaction.
344
April
1992
The American
Journal
of Medicine
Volume
92
Tumulty [9] has described the traditional model of consultation that clearly increases discussion between the referring physician and the specialist. The consultant reports findings to the referring physician and only with that person’s explicit permission does the medical consultant relate information directly to the patient. However, ethics consultations often differ from medical specialty consultations because in ethics cases patient or family may disagree with the primary physician’s plan of care. When ethics consultants share their expertise and give their recommendations primarily to the referring physicians, patients and families may feel left out of the decision-making process. This traditional model of consultation may undercut the patient’s primary role in decision-making, Losing their sense of control may seriously harm patients. Maintaining control over decisions affecting their bodies may be all that is left to patients with chronic and debilitating illnesses. Dependent patients who already feel like “prisoners of technology” become further alienated when their fate appears to be decided by the experts [lo]. Most of the issues that confront ethics consultants are not technical matters. They should be accessible to laypersons and not cloaked within a shroud of professional expertise. Impaired Communication Between Physicians and Patients In this study, only 38 of 68 referring physicians reported discussing the ethical issues in the case with patients or their families. Like Siegler [ 111, we believe that such discussions are an essential aspect of the primary physician’s role. It is distressing that the ethics consultants could not increase physician discussions of ethical issues with patients or families. It is possible that the availability of an ethics consultant had an adverse effect, with physicians turning such discussions over to the consultant rather than talking directly with patients or surrogates. However, patients and families may be frustrated and angered by a compartmentalized health care system in which no single physician is looking at the patient as a whole person. Such feelings may be exacerbated if yet another physician-expert-specialist is introduced and asked to take over during a period of great emotional turmoil for the patient. Dispute Resolution Many dilemmas in clinical ethics involve disagreements between patients or surrogates and physicians. Consider, for example, a disagreement between a terminally ill patient or family and their physician over the use of mechanical ventilation.
ETHICS
The patient rejects its use under any circumstances, while the physician believes intensive care is appropriate to treat what appears to be an acute intercurrent illness. The physician seeks advice from the ethics consultant. After reviewing the data and speaking with the patient, the consultant analyzes the problem intellectually. Questions arise about the patient’s competence and the presence of informed consent, and the consultant recommends that intubation and mechanical ventilation are appropriate. If the primary physician returns to the patient and says, in effect, “I’m right,” the patient or family may lose trust in an ethics consultant who spoke with the attending physician but not directly to them. When the physician is a party to the disagreement, the patient and family may not regard the ethics consultant as impartial if they do not have equal access and treatment. If the consultant does not explain the issues and the analysis directly to the patient and family, they may feel that the consultant is siding with the physician. Resolving disputes over ethical issues requires discussion and negotiation as well as ethical reasoning. Emotional and interpersonal factors are generally at least as important as logical arguments. The article does not give details on the follow-up provided by the ethics consultant. We suggest that an essential part of that follow-up should be facilitating face-to-face discussions between attending physicians and patients concerning the ethical issues. The consultant might organize a family meeting together with the physician and nursing staff so that values may be explored, difficult issues raised, disagreements expressed, and a mutually agreeable resolution negotiated. Indeed, the role of the ethics consultant might be more to help patients, families, and physicians negotiate their own resolutions to disagreements, rather than to offer recommendations that the parties should accept.
IMPLICATIONS After reading the article by La Puma and colleagues, some readers might conclude that all community hospitals should recruit ethicists and develop ethics consultation services. However, we
CONSULTATION
/ TULSKY
AND LO
caution that until ethics consultations are proven beneficial after rigorous evaluation, it is premature to promote their widespread dissemination. Propagation of ethics consultations without better outcome measures may be dangerous, if it encourages the development of programs where the credentials of the consultants may be less clear and the advice given may be less consonant with established principles of clinical ethics. Furthermore, we would recommend that those ethics consultation programs that do exist be combined with an ongoing, hospital-wide educational program on ethical issues. The service established by La Puma and his coworkers is a promising experiment that needs further careful evaluation before it can be considered the standard of care. As physicians, we need to temper our enthusiasm and approach this development as we would any other new and potentially costly innovation. We seek effectiveness, acceptability to patients, value, and, mainly, safety. Our patients are best served when our efforts are primarily focused on them.
REFERENCES 1. La Puma J. Stocking C, Silverstein M, DiMartini A, Siegler M. An ethics consultation service in a teaching hospital-utilization and evaluation. JAMA 1988; 260: 808-l 1. 2. La Puma J. Stocking CB, Darling CA, Siegler M. Community hospital ethics consultation: evaluation and comparison with a university hospital service. Am J Med 1992; 92: 346-51. 3. Sackett D, Haynes R, Guyatt G, Tugwell P. Clinical epidemiology: a basic science for clinical medicine, 2nd ed. Boston: Little Brown, 1991. 4. Meisel A. The right to die. New York: Wiley, 1989. 5. Weir RF, Gostin L. Decisions to abate life-sustaining treatment for nonautonomous patients. Ethical standards and legal liability for physicians after Cruzan. JAMA 1990; 264: 1846-53. 6. Rubenstein L, Josephson K, Wieland G. English P. Sayre J, Kane R. Effectiveness of a geriatric evaluation unit. A randomized clinical trial. N Engl J Med 1984; 311: 1664-70. 7. Perkins H. Saathoff 8. Impact of medical ethics consultations on physicians: an exploratory study. Am J Med 1988; 85: 761-5. 8. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research: making health care decisions. Washington, DC: U.S. Government Printing Office, 1982. 9. Tumulty P. The effective clinician. Philadelphia: WB Saunders, 1973; 45-8. 10. Angel1 M. Prisoners of technology-the care of Nancy Cruzan. N Engl J Med 1990: 322: 1226-8. 11. Siegler M, Singer P. Clinical ethics consultation: godsend or “god squad?” Am J Med 1988; 85: 759-60.
April
1992
The American
Journal
of Medicine
Volume
92
345
EDITORIAL
Ethics Consultation: Time to Focus on Patients JAMESA. TULSKY, M.D., BERNARDLO, M.D., San Francisco, California
hen patients and physicians face ethical dilemmas, asking for assistance from an expert in medical ethics may seem appealing. La Puma, Siegler, and colleagues [1,2] have argued that such consultations gather important primary data, are prompt and efficient, and provide excellent followup. Their article in this issue of the Journal extends their previous work by developing and evaluating a clinical ethics consultation service in a community hospital setting. This study raises two issues for the critical reader. First, how convincing is the evidence that ethics consultations are beneficial? Second, does this model of ethics consultation center so much on the physician that the patient may get lost in the process?
EVALUATINGAN ETHICSCONSULTATION SERVICE Evaluations of ethics consultation services have lacked scientific rigor. Well-established principles in clinical epidemiology should be applied to evaluations of ethics programs [3]. In the study by La Puma et al [2], the primary outcome measures are physician satisfaction and usage. Although these are informative, it would be more helpful to evaluate patient and surrogate satisfaction, reactions of nurses and house staff, and objective measures of dilemma resolution. By doing this, one could see whether generally accepted guidelines in medical ethics are respected in the cases under review. Although these guidelines are not gold standards, their violation would raise serious concerns. For example, in reviewing a series of consultations, one could ask whether the wishes of competent, informed patients are respected. It would be hard to argue that it is desirable for an ethics consultant to reject the choices of a competent and informed patient, even if the attending physician expresses satisfaction with such a consultation. In many wellpublicized legal cases, the physician or hospital has From the Program in Medical Ethics and the Robert Wood Johnson Clinical Scholars Program, School of Medicine, University of California, San Francisco, San Francisco, California. Requests for reprints should be addressed to James A. Tulsky, M.D., Program in Medical Ethics, School of Medicine, University of California, San Francisco, 521 Parnassus Avenue, Room C-126, San Francisco, California 94143-0903. Manuscript submitted February 12, 1992, and accepted February 12. 1992.
wanted to impose therapy over the refusal of an informed patient or family [4,5]. In many such cases, consultants who support the physicians’ position may not be giving sound ethical advice. It is useful to compare evaluating ethics consultation with evaluating new medical technologies through clinical trials. It is insufficient to show that physicians approve of the technology and find it useful in their practice. Patient outcomes and satisfaction are also consequential. It is particularly important to show that a new technology is safe and effective before seeking reimbursement by thirdparty payers. A new clinical service, such as ethics consultations, should be subjected to rigorous evaluation. For example, geriatric assessment units have been studied in randomized clinical trials. One investigation showed improvements in patient outcome measures such as functional status and likelihood of nursing home placement [6]. Evaluating ethics consultation only from the physician’s perspective provides an incomplete picture of its effectiveness and safety. Also primary among the principles of clinical epidemiology is the use of a control group. To use a well-matched control group, researchers might study ethics consultations in an institution that organizes its house staff in a firm system. In such a study, one firm would have access to the ethics consultant whereas the other would not. This design would help eliminate bias. Another principle is that outcome measures should be as objective as possible. Rating scales used for physician or patient satisfaction must be evenly weighted to allow negative responses as easily as positive ones. In the La Puma study, for example, possible responses were rated on a scale from “very helpful” to “not helpful,” with the midpoint at the positive statement of “somewhat helpful.” Physicians were not given the option to state that the consultation made the situation worse. In this report, the patient was charged for the consultation. If, using good clinical epidemiologic methods, we cannot demonstrate that patients benefit by our actions, then it is hard to justify charging them.
PHYSICIAN-CENTEREDETHICSCONSULTATION Even if ethics consultations were evaluated properly, problems would still persist. The La Puma/ April
1992
The American
Journal
of Medicine
Volume
92
343
ETHICS
CONSULTATION
/ TULSKY
AND LO
Siegler model of ethics consultation is physiciancentered. Each step of the consultation process revolves around the physician. At the beginning, the physician is the person who recognizes that an ethical dilemma exists and contacts the consultant. The consultant evaluates the patient and performs a traditional history and physical, with special attention to data that may be ethically significant. He or she then clarifies the ethical issues, synthesizes the information, and presents a number of recommendations to the primary physician, who requested the consultation. The patient is charged for the service and follow-up is provided as needed. In this model, the consultant need not discuss the ethical issues, the analysis, and the recommendations directly with the patient or the patient’s surrogates, even though they have the greatest stake in the outcome. The consultant’s focus on the referring physician may lead to several problems. Limited Access to Consultations In the medical staff model of consultation, may nurses, patients, or their surrogates request a consultation? In the study by La Puma et al, all of the consultations were requested by physicians. If only doctors can contact the ethics consultant, many unresolved ethical issues may never be discussed. Ethical dilemmas often involve disagreements between the physician and patient or between the attending physician and other health care workers. Even if the attending physician does not perceive an ethical problem, the patient, family, or nursing staff may desire the assistance of an ethics consultant. Of note, in this and other studies, few requests for ethics consultation originate from nonmedical or family practice services [7]. Particularly striking is the apparent under-utilization of ethics consultation by surgical services. Would more ethical dilemmas be discussed if access to the ethicist were increased? Threats to Patient Autonomy The major thrust in medical ethics over the past two decades has been to promote patient autonomy. The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research advocated shared medical decision-making by doctors and patients [8]. Respecting the autonomy of patients requires more than granting them final authority over any decisions affecting their bodies. Patients also need to be involved in ongoing discussions of decisions that affect them sq profoundly and personally. As patients act as autonomous agents, they force physicians to engage in dialogues that usually improve outcomes and increase everyone’s satisfaction.
344
April
1992
The American
Journal
of Medicine
Volume
92
Tumulty [9] has described the traditional model of consultation that clearly increases discussion between the referring physician and the specialist. The consultant reports findings to the referring physician and only with that person’s explicit permission does the medical consultant relate information directly to the patient. However, ethics consultations often differ from medical specialty consultations because in ethics cases patient or family may disagree with the primary physician’s plan of care. When ethics consultants share their expertise and give their recommendations primarily to the referring physicians, patients and families may feel left out of the decision-making process. This traditional model of consultation may undercut the patient’s primary role in decision-making, Losing their sense of control may seriously harm patients. Maintaining control over decisions affecting their bodies may be all that is left to patients with chronic and debilitating illnesses. Dependent patients who already feel like “prisoners of technology” become further alienated when their fate appears to be decided by the experts [lo]. Most of the issues that confront ethics consultants are not technical matters. They should be accessible to laypersons and not cloaked within a shroud of professional expertise. Impaired Communication Between Physicians and Patients In this study, only 38 of 68 referring physicians reported discussing the ethical issues in the case with patients or their families. Like Siegler [ 111, we believe that such discussions are an essential aspect of the primary physician’s role. It is distressing that the ethics consultants could not increase physician discussions of ethical issues with patients or families. It is possible that the availability of an ethics consultant had an adverse effect, with physicians turning such discussions over to the consultant rather than talking directly with patients or surrogates. However, patients and families may be frustrated and angered by a compartmentalized health care system in which no single physician is looking at the patient as a whole person. Such feelings may be exacerbated if yet another physician-expert-specialist is introduced and asked to take over during a period of great emotional turmoil for the patient. Dispute Resolution Many dilemmas in clinical ethics involve disagreements between patients or surrogates and physicians. Consider, for example, a disagreement between a terminally ill patient or family and their physician over the use of mechanical ventilation.
ETHICS
The patient rejects its use under any circumstances, while the physician believes intensive care is appropriate to treat what appears to be an acute intercurrent illness. The physician seeks advice from the ethics consultant. After reviewing the data and speaking with the patient, the consultant analyzes the problem intellectually. Questions arise about the patient’s competence and the presence of informed consent, and the consultant recommends that intubation and mechanical ventilation are appropriate. If the primary physician returns to the patient and says, in effect, “I’m right,” the patient or family may lose trust in an ethics consultant who spoke with the attending physician but not directly to them. When the physician is a party to the disagreement, the patient and family may not regard the ethics consultant as impartial if they do not have equal access and treatment. If the consultant does not explain the issues and the analysis directly to the patient and family, they may feel that the consultant is siding with the physician. Resolving disputes over ethical issues requires discussion and negotiation as well as ethical reasoning. Emotional and interpersonal factors are generally at least as important as logical arguments. The article does not give details on the follow-up provided by the ethics consultant. We suggest that an essential part of that follow-up should be facilitating face-to-face discussions between attending physicians and patients concerning the ethical issues. The consultant might organize a family meeting together with the physician and nursing staff so that values may be explored, difficult issues raised, disagreements expressed, and a mutually agreeable resolution negotiated. Indeed, the role of the ethics consultant might be more to help patients, families, and physicians negotiate their own resolutions to disagreements, rather than to offer recommendations that the parties should accept.
IMPLICATIONS After reading the article by La Puma and colleagues, some readers might conclude that all community hospitals should recruit ethicists and develop ethics consultation services. However, we
CONSULTATION
/ TULSKY
AND LO
caution that until ethics consultations are proven beneficial after rigorous evaluation, it is premature to promote their widespread dissemination. Propagation of ethics consultations without better outcome measures may be dangerous, if it encourages the development of programs where the credentials of the consultants may be less clear and the advice given may be less consonant with established principles of clinical ethics. Furthermore, we would recommend that those ethics consultation programs that do exist be combined with an ongoing, hospital-wide educational program on ethical issues. The service established by La Puma and his coworkers is a promising experiment that needs further careful evaluation before it can be considered the standard of care. As physicians, we need to temper our enthusiasm and approach this development as we would any other new and potentially costly innovation. We seek effectiveness, acceptability to patients, value, and, mainly, safety. Our patients are best served when our efforts are primarily focused on them.
REFERENCES 1. La Puma J. Stocking C, Silverstein M, DiMartini A, Siegler M. An ethics consultation service in a teaching hospital-utilization and evaluation. JAMA 1988; 260: 808-l 1. 2. La Puma J. Stocking CB, Darling CA, Siegler M. Community hospital ethics consultation: evaluation and comparison with a university hospital service. Am J Med 1992; 92: 346-51. 3. Sackett D, Haynes R, Guyatt G, Tugwell P. Clinical epidemiology: a basic science for clinical medicine, 2nd ed. Boston: Little Brown, 1991. 4. Meisel A. The right to die. New York: Wiley, 1989. 5. Weir RF, Gostin L. Decisions to abate life-sustaining treatment for nonautonomous patients. Ethical standards and legal liability for physicians after Cruzan. JAMA 1990; 264: 1846-53. 6. Rubenstein L, Josephson K, Wieland G. English P. Sayre J, Kane R. Effectiveness of a geriatric evaluation unit. A randomized clinical trial. N Engl J Med 1984; 311: 1664-70. 7. Perkins H. Saathoff 8. Impact of medical ethics consultations on physicians: an exploratory study. Am J Med 1988; 85: 761-5. 8. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research: making health care decisions. Washington, DC: U.S. Government Printing Office, 1982. 9. Tumulty P. The effective clinician. Philadelphia: WB Saunders, 1973; 45-8. 10. Angel1 M. Prisoners of technology-the care of Nancy Cruzan. N Engl J Med 1990: 322: 1226-8. 11. Siegler M, Singer P. Clinical ethics consultation: godsend or “god squad?” Am J Med 1988; 85: 759-60.
April
1992
The American
Journal
of Medicine
Volume
92
345
