An opposing view.
In the wake of the Cruzan decision, many are advocating widespread discussions of advance health care directives by physicians with their patients. Dr Bernard Lo recently stated: "Physicians should make sure to discuss life-sustaining treatments with patients while they are still competent. Such discussions have been recommended previously, the stakes are higher now.... Such discussions may consume a substantial amount of time, but the alternative may be to spend even more time in court or to be required to provide treatments that conflict with physicians' professional judgment and the wishes of patients and families. If the physicians do not encourage patients to give directives in advance, the courts may assume medical roles for which they are poorly suited. " I
Should the routine discussion of advance health care directives be prioritized as highly as Dr Lo recommends? It is at best an uncertain investment of the valuable time physicians spend with their patients. It would not have altered Nancy Cruzan's tragic entanglement with the courts. A review of the tenuous legal status and limitations of advance directives will explain why.
THE LEGAL STATUS OF LIVING WILLS
In the wake of the Quinian case and the California Natural Death Act in 1976, 41 states and the District of Columbia have passed "living will" legislation to protect individuals from unwanted death-prolonging medical care. Living wills generally specify when and under what conditions medical procedures can be forgone. Unfortunately, the circumstances under which living wills apply can be quite limited, and implementation has had limited success. After a decade of legal recognition, only 5% to 15% of Americans currently have completed living wills. Hospitals do not routinely inquire about their existence when important medical decisions are being made. (2)
The details of the automobile accident that led to Nancy Cruzan's institutionalization at the Missouri Rehabilitation Center in Mount Vernon, in a persistent vegetative state and fed by gastrostomy tube, have been extensively described. The initial Missouri trial court review, noting the consensus among Nancy's family, a court-appointed guardian ad litem, and her physicians, ordered the tube feedings stopped. The court also praised the "caring compassion of the respondents and their associates." (3)
The Missouri Supreme Court reversed the trial court ruling, not on the basis of any factual concerns, but on the assertion that (1) the common law right to refuse treatment cannot apply to incompetent people, (2) a constitutional right to privacy does not establish a "right to die" or abrogate the State of Missouri's unqualified interest in the preservation of life, and (3) Missouri state law limits a guardian's authority to make such decisions. The radical conclusions of the Missouri Supreme Court conflict with the trend in all other state courts except New York.
Would a living will executed in January 1983 have prevented the current tragedy of Nancy Cruzan's existence? Probably not. First, the Missouri Supreme Court questions the basic premise of living wills. It categorically states, "it is definitionally impossible for a person to make an informed decision--either to consent or to refuse--under hypothetical circumstances; under such circumstances, neither the benefits nor the risks of treatment can be properly weighed or appreciated." (3) The court cites state law to assert that the state's unqualified interest in the preservation of life is based on "the principle that life is precious and worthy of preservation without regard to its quality." (3) Finally the court notes that the Missouri living will statute specifically excludes nutrition and hydration from procedures that can be considered death-prolonging and that Nancy's condition is not terminal. These two elements-death-prolonging and temtinal--are necessary conditions in Missouri for a living will to authorize the withdrawal of treatment. The Missouri Supreme Court decided the state's unqualified interest in life could be countervened only by "clear and convincing evidence" of Nancy Cruzan's wishes, but made those wishes procedurally impossible to express.
In a narrowly worded majority opinion, Chief Justice Rehnquist cast the US Supreme Court decision: "In this Court, the question is simply and starkly whether the United States Constitution prohibits Missouri from choosing the rule of decision which it did. Missouri requires that evidence of the incompetent's wishes as to the withdrawal of treatment be provided by clear and convincing evidence. . . . The question, then, is whether the United States Constitution forbids the establishment of this procedural requirement by the state. We hold that it does not." (4) The US Supreme Court did not directly address many of the central tenets of the Missouri court's reasoning, but in a tantalizing passage stated that "for the purposes of this case, it is assumed that a competent person would have a constitutionally protected right to refuse life saving hydration and nutrition" (4) (emphasis added). in a concurring decision, Justice O'Connor went even further to state, "I agree that a protected liberty interest in refusing unwanted medical treatment may be inferred from our prior decisions, and that the refusal of artificially delivered food and water is encompassed within that liberty interest." (4) How one can gain access to this right in Missouri is not clarified.
ADVANCE DIRECTIVES: NEW AND IMPROVED
In an effort to improve on the limitations of traditional living wills, Emanuel and Emanuel (5) have created what they term a new comprehensive advance care document. Twelve medical procedures are presented in the context of four clinical scenarios. The effort is designed to provide greater flexibility and specificity, with the opportunity to request or deny specific procedures given each clinical scenario. While providing greater clarity, the directive could not be completed by the majority of individuals without a medical interpreter. Its use would involve an enormous investment of physician time. Its complexity dramatizes the dilemma noted by the Missouri Supreme Court: Can such discussions of hypothetical situations lead to truly informed decisions? A survey of Arkansas physicians found their major concern about advance directives was that "patients could change their minds about heroic treatment after becoming terminally ill. (6) Such indecision in the face of suffering is familiar to physicians. A study of women's attitudes toward anesthesia during childbirth found that I month before labor they preferred to avoid anesthesia but during active labor their preferences suddenly shifted toward avoiding pain. The author concludes that "patients may make inherently less reliable value assessments of abstract outcomes they have never experienced." (7)
Exclusive focus on details of specific medical procedures may divert physicians from ways in which they can better understand patients' values. Kohn and Menon (8) have found elderly outpatients and physicians had different frameworks for approaching decisions about life-prolongation issues. While both groups took a pragmatic approach, the elderly weighed more heavily issues of dependency, suffering, and the role of fate and faith. The life-prolongation issue had been faced on an intimate level by nearly every elderly informant interviewed, whereas health professionals responded from a more distant professional perspective. (8) New, but untested, approaches to help physicians bridge this gap include structured formats for taking a "medical future" (9) or "a value history." (10)
The latest form of advance directive has been the appointment of proxy health care decision makers. Currently 20 states and the District of Columbia have adopted durable power of attorney statutes expressly authorizing the appointment of proxies for making health care decisions. They specify how individuals may identify a person to make decisions about their health care for them if they become no longer competent to decide for themselves. Some legal authorities believe that durable power of attorney statutes, currently available in all 50 states, could encompass health care decisions. Appointment of proxy health care decision makers allows the dynamic, situation-specific, informed consent process to continue even if the patient becomes unable to participate. Justice O'Connor, in a concurring opinion on the Cruzan case, endorses the "practical wisdom of such a procedure ... that specifically authorize(s) an individual to appoint a surrogate to make medical decisions." (4) SUrveys have shown that while a minority of citizens have completed living wills, most have discussed their wishes concerning life-prolonging treatment with family members. The New Jersey Supreme Court observed, Family members are best qualified to make substitute judgments for incompetent patients, not only because of their peculiar grasp of the patient's approach to life, but also because of their special bonds with him or her. . . . It is ... they who treat the patient as a person, rather than a symbol of a cause." (11)
ROUTINE DISCUSSION OF ADVANCE HEALTH CARE DIRECTIVES
Surveys have demonstrated that physicians discuss advance health care directives and specific issues, such as do-not-resuscitate orders, with the minority of their patients. Do-not-resuscitate discussions are frequently postponed until patients are so ill, they cannot directly participate. (12) One survey found that such discussion involved family in 86% of the cases, but patients themselves in only 22%. (13) Advocates of early and more routine discussions point out that such discussions can improve the quality of physician-patient communication, clarify important patient values, and identify areas of agreement or conflict between the physician and patient. These advocates further emphasize studies indicating that many older citizens wish to discuss these issues routinely with their physicians. (14) A survey of Arkansas physicians found wide support for the use of advance directives in clinical practice. Those physicians with the most positive attitudes reported personal experience with advance directives influencing treatment decisions in critical situations. Only 28% of the respondents, however, had ever discussed advance directives with more than 25 patients. (7)
Given the evidence that physicians do not currently discuss these issues routinely, can one assume that physicians are prepared for routine discussions with all patients? No published surveys assess physicians' knowledge about advance health care directive legislation in their own states, but Youngner et al (15) demonstrated significant health care professional confusion about legal definitions of brain death. Little information exists to guide physicians on how to raise these issues in a sensitive and supportive way. Studies of the use of advance directives in the office setting have allowed exclusion of patients at risk for significant emotional harm, but predictive characteristics have not been identified. (16) Indiscriminate implementation of advance directive discussions will match less carefully prepared physicians and less carefully selected patients. The poor, the uneducated, and the uninsured, groups disenfranchised from the full benefits of health care in America, may misinterpret physicians' motives for initiating discussions of advance directives. Despite generally good intentions, physicians must also recognize the potential conflict of interest in discussing advance directives with patients if they have a financial interest in the decision. A balanced discussion should offer directives for "maximal care" (17) as well as traditional directives designed to stop or limit care.
Supreme Court Justice Brennan, in an eloquent dissenting opinion on the Cruzan case, observes, "Too few people execute living wills or equivalent formal directives for such an evidentiary rule to insure adequately that the wishes of incompetent persons will be honored . . . . When a person tells family or close friends that she does not want her life sustained artificially, she is expressing her wishes in the only terms familiar to her ... to require more is unrealistic, and for all practical purposes, it precludes the rights of patients to forgo life-sustaining treatment." (14) ThiS SoCial reality cannot be changed by even the most conscientious efforts by physicians to discuss advance directives. Only policies at the state and national levels can equitably address this dilemma.
The need for physicians to improve communication with their patients is clear. Discussions that help physicians understand their patients' values and wishes over the entire spectrum of health care decisions are important. The Cruzan decision has codified the primacy of state law in establishing the legal framework for health care decisions, but many unresolved legal issues remain. Afl physicians are obligated to understand the living will and durable power of attorney for health care statutes in their respective states. Physicians must prepare to explain and disseminate this information to interested patients.
There are potential errors physicians must avoid in discussing advance health care directives. We must not trivialize these difficult, highly personal discussions by excessive reliance on advance directive forms alone. We must not advocate the use of advance directives as a solution to social or economic issues. We must not focus exclusively on advance directives to limit care. We must not ignore the needs of individuals unlikely to have advance directives: the poor, the uneducated, or members of unique cultural or religious groups.
Physicians have no interest in providing care that is unwanted or not medically indicated. We must educate our patients and ourselves about advance directives. We must encourage patients to discuss these issues with their families. We must overcome our own ambivalence about discussing death. We must educate state legislatures and support state laws designed to protect the rights of incompetent persons. We must continue, despite an uncertain legal environment and imperfect models for advance directives, to honor our patients' wishes and protect their best interests.
1 .Lo B, Rouse F, Dorbrand L: Family decision making on trial: Who decides for incompetent patients? N Engl J Med 1990; 322:1228-1232
2. McCrary SV, Botkin JR: Hospital policy on advance directives: Do institutions ask patients about living wills? JAMA 1989; 262:2411-2414
3. Cruzan v Harmon, 760 SW 2d 408 (Missouri 1988)
4. Cruzan v Director, Missouri Department of Health, 110 S Ct 2841 (1990)
5. Emanuel LL, Emanuel EJ: The medical directive: New comprehensive advance care document. JAMA 1989; 261:3288-3293
6. Davidson KW, Hackler C, Caradine DR, McCord RS: Physicians' attitudes on advance directives. JAMA 1989; 262:2415-2419
7. Christensen-Szalanski JJ: Discount functions and the measurement of patients' values: Women's decisions during childbirth. Med Decis Making 1984; 4:47-a
8. Kohn M, Menon G: Life prolongation: Views of elderly outpatients and health care professionals. J Am Geriatr Soc 1988; 36:
9. Kapp MB: Advance health care planning: Taking a "medical future." South Med J 1988; 81:221-224
10. Doukas D, McCallough L: Truthtelling and confidentality. In Reichel W: Clinical Aspects of Aging, ed 3. Baltimore, Williams & Wilkins, 1989, pp 615-616
11. in re Jobes, 198 NJ 394, 529 A 2d 434 (1987)
12. Gleeson K, Wise S. The do-not-resuscitate order: Still too little too late. Arch Intern Med 1990; 150:1057-1060
13. Bedell SE, Pelle D, Maher PL, Cleary BD: Do-not-resuscitate orders for the critically ill patents in the hospital: How are they used and what is their impact? JAMA 1986; 256:233-237
14. Lo B, McLeod GA, Saika G: Patient attitudes to discussing life sustaining treatment. Arch intern Med 1986; 146:1613-1615
15. Youngner SJ, Landefeld CS, Coulton CJ, et al: "Brain death" and organ retrieval: A cross-sectional survey of knowledge and concepts among health professionals. JAMA 1989; 261:2205-2210
16. Finucane TE, Shumway JM, Powers RL, D'Alessandri RM: Planning with elderly outpatients for contingencies of severe illness: A survey and clinical trial. J Gen Intern Med 1988; 3:322-325
17. Kapp MB: Response to the living will furor: Directives for maximum care. Am J Med 1982; 72:855-859
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|Title Annotation:||to the idea that patients should discuss advance health care directives with their physicians|
|Author:||Rodriguez, Glenn S.|
|Publication:||Journal of Family Practice|
|Date:||Dec 1, 1990|
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