SPECIAL ARTICLE * ARTICLE SPECIAL
Advance directives: Are they an advance? Advance Directives Seminar Group, Centre for Bioethics, University of Toronto A n advance directive is a document intended to govern the kind of life-sustaining treatment that a competent person will receive if he or she later becomes incompetent.' An instruction directive, also called a living will, contains a person's preferences regarding the use of life-sustaining treatments. A proxy directive, also called a durable power of attorney for health care, contains a person's preferences regarding who is to make decisions about life-sustaining treatment on his or her behalf. The two types - instruction and proxy - can be combined into a single document. In the United States, since the 1976 California Natural Death Act,2 49 states and the District of Columbia have enacted laws permitting the use of advance directives (Bob Langstaff, Choice in Dying, New York: personal communication, 1991). In 1990 Congress passed an act that included provisions for patient self-determination;3 these required health care facilities receiving federal funds to inform patients of their right to forgo life-sustaining treatment and to complete an advance directive. Since the 1976 Quinlan case4 many state supreme court cases have recognized the right of patients to forgo
life-sustaining treatment. In the Cruzan case,5 in 1990, the US Supreme Court affirmed that this right is protected by the US constitution. In Canada Nova Scotia and Quebec have legislation permitting the use of proxy directives.6,7 No province has legislation regarding instruction directives. In the Astaforoff case, in 1983, the British Columbia Court of Appeal held that forced feeding of a patient was not mandatory.8 In the 1990 case of Malette v. Shulman9 the Ontario Court of Appeal found that a physician is liable for administering blood transfusions to an unconscious patient who carries a card stating that he or she is a Jehovah's Witness and rejects blood transfusions under any circumstances. The Law Reform Commission of Manitoba has published a report on advance directives, including draft legislation.'0 In Ontario in 1990 Mr. Norman Sterling, a member of the provincial Parliament, introduced two private member's bills on advance directives;"",2 these bills passed second reading in the legislature. On May 27, 1991, the Ontario government introduced the Consent to Treatment Act'3"14 and the Substitute Decisions Act,'5 which accompany the earlier Advocacy Act.'6
Principal author and chair. Dr. Peter A. Singer, assistant professor of medicine and associate director, Centre for Bioethics, University of Toronto, Toronto, Ont. Ceaathors: Eileen Ambrosio, registered nurse, Street Health, Toronto; Shelley Birenbaum, policy analyst, Ontario Ministry of Citizenship, Toronto; Arthur Fish, doctoral candidate, Faculty of Law, University of Toronto; Dr. David Hughes, resident in family medicine, University of Toronto; Dr. Abrahim H. Khan, lecturer in religious studies, University of Toronto; Pamela Khan, senior tutor, Faculty ofNursing, University of Toronto; Pat Rundle, adult educator, Ontario Institute for Studies in Education, Toronto; Dr. John Senn, director, Clinical Ethics Centre, Sunnybrook Health Science Centre, University of Toronto; Dr. Ross Upshor, physician, Toronto; Jo-Ann P. Willson, lawyer, Miller Thomson, Toronto; andfrom the Centre for Bioethics: Dr. Frederick H. Lowy, professor ofpsychiatry and director; Dr. Eric M. Meslin, assistant professor ofphilosophy and assistant director; Dr. Carol Nash, program coordinator; and graduate students Dr. Nitsa Kohut, Michelle Mullen, Hussein Z. Noorani, Nancy Ondrusek, Sharon Rea, Mehran Sam and Linda R. Shaw. The Centre for Bioethics is supported by grant 03006 from the Ontario Ministry of Health and by the Bertha Rosenstadt and William C. Harris estates. Dr. Singer is supported in part by a medical scholarship from the Canadian Life and Health Insurance Association. The views expressed herein are the authors' and do not necessarily represent those of the supporting institutions. Reprint requests to: Dr. Peter A. Singer, Centre for Bioethics, University of Toronto, Rm. 303, Tanz Building, 6 Queen's Park Cres. W, Toronto, ONM5S 1A8 JANUARY 15, 1992
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These bills, which contain provisions regarding advance directives, have passed second reading and are currently before a provincial legislative committee. At the federal level Mr. Robert L. Wenman has introduced a private member's bill'7 amending the Criminal Code to explicitly exclude decisions to forgo life-sustaining treatment from the homicide provisions; this bill has passed second reading and is now before a federal legislative committee. The CMA has also prepared a statement regarding advance directives. The Centre for Bioethics, University of Toronto, organized a year-long seminar on advance directives during 1990-91. Participants included undergraduate and graduate students, nurses, physicians, philosophers, health administrators, lawyers and scholars in religious studies. We devoted one session to each of the questions posed in this article. The minutes of the meetings were incorporated into a draft paper, which was revised and recirculated to the group until a consensus was reached. This article represents the final version of the paper. Our purpose was to examine some fundamental questions related to advance directives: Should advance directives be supported in principle? If so, how should they be designed? Who should be offered one? When should advance directives be updated? What should be done if patients change their minds? How should implementation be enforced? How should consideration of their use be promoted?
relieving them of the obligation to make life-or-death treatment decisions or, at least, by assuring them that they are making the decision the patient would have wanted them to make. Fourth, advance directives may reduce the psychologic distress of health care providers who do not know whether to provide life-sustaining treatment (that patients may not have wanted) or not to provide such treatment (that patients may have wanted).23 Finally, advance directives may increase physician-patient communication. They provide a framework and focus for discussion of medically and ethically relevant issues.
Seven arguments oppose the use of advance directives.24 First, people who have become incompetent, such as those in a persistent vegetative state, are greatly changed from when they were competent, and the decisions they would make if they could communicate might be different. It may be inappropriate to project the autonomous wishes of competent people onto future situations of incompetence. Second, justice does not require equal treatment of groups that vary in morally relevant ways. Competent patients are fully autonomous; incompetent patients are not. This may represent a morally relevant difference. Should advance directives be supported in Third, people change their minds and may principle? forget to change their directives, in which case care may be provided that the patient does not want or Arguments in favour would adamantly reject if he or she could. Fourth, most advance directives are biased toFive arguments support the use of advance ward refusal of. treatment. If vulnerable groups are directives. First, because they permit competent selectively encouraged to complete them directives people to project their preferences regarding life-sus- may become an instrument of discrimination. Moretaining treatment onto situations of future incompe- over, it might be assumed that patients who have not tence advance directives extend people's autonomy. completed a directive want life-sustaining treatment Studies have found that most patients want to to be provided. discuss life-sustaining treatment with their physFifth, policies on advance directives may restrict icians'8-2' and that 93% of outpatients and 89% of patients' rights. In the United States some states the public want advance directives.22 Moreover, allow only patients who are terminally ill to commaking an advance directive is itself an exercise of plete advance directives, and some exclude artificial autonomy - people may benefit from knowing that feeding from the types of treatments that may be they have done all they can to decide about treat- contained in an advance directive. ment issues in the event of incompetence. Sixth, advance directives may lead to inapproSecond, advance directives promote the fair priate choices if situations arise that the person did treatment of incompetent patients by conveying not foresee or consider. There may be a medical their prior wishes. Since competent patients have the advance that would restore the person to full health. right to forgo life-sustaining treatment5s8 justice re- Conversely, treatment may be futile in a particular' quires that incompetent patients also have this right situation, and yet the person requested it in the and not be treated differently. directive when the hopelessness of the situation was Third, advance directives may reduce the emo- not apparent. tional anguish to the patient's family members by Finally, by substituting a written form for phys128
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ician-patient dialogue advance directives may undercut the goal of informed consent - extensive and open discussion between patients and health care professionals.
functioning, pain, social interaction, other elements of quality of life and medical technology. Another directive, the Values History,26 contains a series of questions about "attitude toward life" and "personal relationships."
Balancing the arguments
Value-based directives may be easier for patients to complete, because they do not require a knowledge of health problems or medical treatments. However, preference-based directives may be easier for health care professionals to interpret and implement, because they provide more explicit directions regarding treatment. It is difficult to know how to balance these conflicting goals. Since values and preferences represent fundamentally different, but complementary, approaches, instruction directives should contain both these components.
There are arguments of autonomy and justice that support and oppose the use of advance directives. The remaining arguments in favour - families' emotional anguish, the distress of health care professionals and improved communication - reflect anecdotal experience but will require empirical validation. The remaining arguments against - changing preferences, the biased design of advance directive forms, applicability to patients who are not terminally ill, inappropriate treatment choices and undermining of the patient-health care professional dialogue - are practical issues of implementation. We conclude that although advance directives may be desirable in principle, if they are not carefully designed and implemented they may have undesirable effects in practice.
Instruction or proxy directive?
It is difficult to design instruction directives to anticipate all possible clinical situations. Proxy directives avoid this problem by allowing the proxy to make an informed choice based on the clinical circumstances, but not everyone has a potential How should advance directives be designed? proxy he or she can trust. Because instruction and proxy directives complement one another we recommend that patients be offered both in one document. Refusals of or requests for life-sustaining People who do not want to consider the use of treatment? life-sustaining treatments and prefer to entrust someSome instruction directives permit patients only one else with decision-making authority should comto refuse, not to request, life-sustaining treatment. plete only the proxy component. People without For example, the Ontario private member's bill proxies whom they trust should complete only the defines a living will as "a written declaration that instruction component. sets out that the person executing the declaration does not wish to have a life-sustaining procedure Can a specific advance directive be carried out on him or her if the person is suffering recommended? from a terminal condition and is no longer mentally Many advance directive documents are currentcompetent."'2 The Medical Directive25 permits patients to decline or request life-sustaining treatment ly available and have been developed by a number of and has options that include "undecided" and "I bodies: "right to die" groups (e.g., the Society for the want a therapeutic trial."25 Since the goal is to record Right to Die, Concern for Dying and Dying with for the future the preferences of competent patients Dignity), religious organizations (e.g., the Catholic it seems unreasonable to offer advance directives Health Association), the American Bar Association that provide only for refusal. Advance directives in cooperation with the American Association of should permit patients to refuse or request life-sus- Retired Persons, states (e.g., New Jersey27), professional associations (e.g., the American College of taining treatment. Chest Physicians) and individual investigators.25'26,28 It is likely that the patient self-determination proviTreatment preferences or general life values? sions of 19903 will increase the number of advance Instruction directives can focus on preferences directive documents. We cannot recommend any or values. By preference we mean a specific choice one document over another, since empirical data regarding the use of life-sustaining treatments in would be needed for comparison: Which directive is identified clinical situations. The Medical Directive preferred (and why) by patients, families and health permits patients to choose or refuse 1 1 specific care providers? Which is most likely to ensure that treatments in four specified clinical situations.25 By patients receive the care they request when they value we mean a person's attitudes toward various become incapacitated? Such questions are in urgent domains of human life such as physical and mental need of research. JANUARY 15, 1992
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Who should be offered an advance directive?
tients have likely already considered their death, their completing a directive may not be distressing Advance directives could be offered not only to and may provide comfort by returning to them people who have requested information about them control over the future course of treatment. Morebut also to the public, patients admitted to hospital, over, such patients may be the most receptive to patients who have specific target conditions and advance directives. They are likely to have a repeople who are making or updating their testamen- lationship with a physician who can raise the topic tary wills. (By "offering" we mean systeniatically of life-sustaining treatment in a sensitive manner providing information about and the opportunity to and at an appropriate time. On the other hand, an complete an advance directive with assistance when advance directive may distress some patients, espenecessary.) cially in emergencies, when there is only limited time Information about advance directives and even to consider the choice. Health care providers may the forms themselves could be distributed with not want to raise the issue of advance directives drivers' licences, health cards, income tax returns because of the time involved, the lack of reimburseand census questionnaires, at post offlces or through ment or the emotional stress of such discussions. mass mailing. Information could also be provided The criteria for target groups may be difficult to through special toll-free telephone numbers. The define, and identifying an already vulnerable group main advantage of this approach is that it would of patients as being in need of advance directives reach all those who might need life-sustaining treat- could be considered discriminatory. ment; for example, young adults admitted to hospital People who are making or updating their wills unconscious after a motor vehicle accident. More- (testators) could be offered an advance directive. In over, it would meet an egalitarian standard of this way a large number of people would be reached. justice, since all citizens would be offered the oppor- Testators are already thinking about their death and tunity to complete a directive. The disadvantage is so are likely to be receptive to discussing such issues. that language, literacy and educational barriers may The lawyers involved often have their clients' trust, a prevent many people from understanding the direc- detailed knowledge of their personal affairs and tives and completing them appropriately. experience in discussing intimate and delicate matAdvance directives could be offered to all pa- ters with them. They are also experienced in recogtients at the time of hospital admission, as required nizing people whose competence is likely to be by the patient self-determination provisions of challenged, so that such clients can be referred for 1990.3 An advantage of this approach is that patients medical or psychiatric assessment and their compeadmitted to hospital are more likely than members tence documented convincingly in case of a later of the public to need advance directives. Many challenge. One disadvantage of offering these people patients have conditions with foreseeable clinical an advance directive is the implicit suggestion that a courses, and discussions can be focused on the will concerning disposal of property is of equal life-sustaining treatments that they might need; the importance to a will concerning "disposal" of a choices are not as hypothetical and abstract as they person's life and that they can be dealt with through are for healthy people. There are several drawbacks: a similar process. Another is that without the assisdiscussions might be distressing to sick patients; tance of a physician, lawyers often cannot properly advance directives cannot be completed by patients draft or discuss specific instruction directives. who are incompetent at the time of admission; Patients who are chronically or terminally ill are patients in the midst of a medical emergency may most likely to become incompetent and therefore not understand the choices being offered; the hospi- have the most urgent need for an advance directive. tal environment is potentially coercive; and if facili- People making or updating their wills are already ties are obliged to offer advance directives the thinking about death and so may be more receptive. different versions developed may prove to be a We do not claim that these are the only groups to problem if the patient is subsequently transferred to whom advance directives should be offered or that another facility. physicians and lawyers are the only people who Another group to be offered advance directives should be offering them. could be patients with specific illnesses. Such patients could be chronically or terminally ill or have When should advance directives be updated? such illnesses as early Alzheimer's disease, acquired immunodeficiency syndrome, end-stage renal disease Advance directives should be updated when or amyotrophic lateral sclerosis. The advance direc- people change their minds about their choices. tive would embody a considered and authentic Moreover, a policy of regular updating may increase choice, since patients would be in the situation to the confidence of health care professionals and which their instructions apply. Because these pa- families that they are following the patients' most 130
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current wishes. An adequate advance directive process must have some mechanism whereby changes can be easily incorporated and made known to all involved parties. How often and under what circumstances people change their minds regarding the content of their advance directive is an empirical question. Four studies have examined the stability of preferences for life-sustaining treatment. Everhart and Pearlman29 found that for critically ill patients. these preferences at the time of discharge from an intensive care unit and 1 month later were stable. Silverstein and associates30 reported that patients with amyotrophic lateral sclerosis changed their preferences over a 6-month period. Emanuel and collaborators3' found that on average the durability over 6 to 12 months of patients' preferences regarding situation-treatn¶?ent choices in the Medical Directive was 87%. Teno, Mor and Fleishman32 found moderate stability over 1 year of the preferences of patients with human immunodeficiency virus infection (x = 0.16 to 0.35). We believe that updating should be done when there is a change in the patient's clinical status (improvement or deterioration), when the patient is admitted to a health care facility, when it is deemed appropriate by the physician or lawyer and when there is a major event such as divorce, death of a spouse, birth of children or move to a new jurisdiction. In addition, for patients in institutions advance directives should be considered part of the medical record in the same way details of medication are; as such, they would be subject to review on a semiannual or annual basis. It is probably unnecessary to set fixed periods after which advance directives are automatically null and void. A lesson from the decision in the Malette case9 is that when people complete a directive their preferences will now be taken seriously. Linking advance directives to other documents (e.g., a driver's licence) may ensure that people review their directives regularly. However, they should be informed at the time they complete an advance directive that it is not cast in stone, that if they change their mind they should change their directive and that all those who are aware of the earlier directive should be informed of the change.
What should be done if patients change their
When patients complete advance directives they are, presumably, competent. When they change their minds later they may be competent or they may not. (The terms "competent" and "incompetent" are the subjects of considerable philosophic, medical and legal discussion33'34 JANUARY 15, 1992
that is beyond the scope of this article.) If a competent patient is able to communicate a preference that is contradictory to the one in the advance directive physicians should honour the later preference. Informed consent is a process and not an event, and patients have the right to change their minds. Safeguards should ensure that the patient did not change his or her mind under duress, but there is no reason to be more suspicious of changes of preference than of advance directives themselves. Since the ability to express a preference is a key element of competence a competent patient who is unable to communicate is more a theoretic than a practical problem. Some members of our seminar group, however, felt that this was a serious consideration and provided the example of a schizophrenic patient who just stares at the examiner when asked a question. A patient who is incompetent and able to communicate is controversial. Some members of our group held that the patient's last competent wish, not the wish expressed during the state of incompetence, should be followed regardless of whether the patient had recently declined a previously requested treatment or recently requested a previously declined treatment. The rationale is the overriding priority of autonomy as embodied in the advance directive. Others argued that the physician should act generally in favour of preserving life. If the patient initially declined treatment but later requested it, then treatment should be given. If the patient initially requested treatment but later declined it, then again treatment should be given. The rationale is that in the face of contradictory evidence about the patient's authentic wishes the physician should err in favour of preserving life, because wrongful death is worse than wrongful life.35 If time permits we recommend broad consultation with the family, other health care professionals and possibly institutional ethics committees or consultants. Since the patient who is incompetent and unable to communicate is unable to express a change in preference this situation, too, is more theoretic than practical.
How should implementation be enforced? A recent study by Danis and colleagues36 has shown that 75% of patients received the type of care that they requested in an advance directive. Was this rate of compliance too low, too high or just right? How should compliance with patient's advance directives be enforced? We considered three mechanisms: legislation, case law and a system of graded referral through ethics committees and administrative tribunals. (The problem of conscientious objection to a patient's CAN MED ASSOC J 1992; 146 (2)
treatment has been addressed elsewhere.37'38) First, compliance with advance directives could be enforced through sanctions contained in provincial legislation and buttressed by federal legislation, including the Criminal Code and the Canadian Charter of Rights and Freedoms. For example, the Ontario private member's bill"2 provided for imprisonment of up to 1 year and a fine of up to $1000 for physicians who fail to follow a patient's advance directive. The perceived benefits of legislative sanctions depend on one's view of the problem that advance directives attempt to address. If one believes that patients' preferences are usually unknown but if they were known health care professionals would act in good faith to carry them out, then legislative sanctions are unnecessary. If one believes that even if patients' preferences were known health care professionals would not follow them, then legislative sanctions are necessary. There are potential hazards to legislative sanctions. Patients' directives may be followed even if there is evidence that the patient had changed his or her mind, perhaps as a result of the clinical circumstances. Sanctions may deter health care professionals from offering advance directives to their patients because they fear that they will be forced to follow the poorly considered or inauthentic wishes of the patients who complete them. Finally, health care professionals are generally sceptical of legal solutions to patient care problems, and the presence of heavyhanded legislative sanctions may cause them to abandon the entire project of advance directives. Some would argue that legislation that recognizes advance directives without ensuring that they will be followed is unnecessary. However, a clear benefit of such legislation is its symbolic value: the message that society approves of advance directives. Legislation would likely promote the use of these documents. It would dispel the concerns of health care professionals regarding the legality of advance directives. (It could also provide immunity from civil prosecution or disciplinary action for physicians who follow patients' advance directives.) It would offer an opportunity for public education through the news media as the proposed legislation is debated in provincial legislatures or the federal Parliament. Second, compliance with advance directives could be enforced solely by the common law and the courts. However, the adversarial nature of the courtroom is not well suited to the human problems of the hospital or clinic, and family lawyers increasingly realize that conflicts are best resolved outside the courts. Moreover, if all cases of disagreement were referred to the courts an already burdened system would be overloaded. Access to the court system requires financial resources 132
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that many families may not possess. Finally, compliance could be enforced by graded referral, which occupies a middle ground between legislative sanctions and common-law solutions. Legislation could establish a process of selective referral of cases in which the health care professional wishes to deviate from or seek clarification about the patient's advance directive or in which there is conflict between providers and family members regarding its implementation. Such a system would operate at three levels. First, cases involving conflict would be referred to the institutional ethics committee.39 Second, cases not thus resolved would be referred to a professional disciplinary board or multidisciplinary administrative tribunal. (The advantage of a professional disciplinary board administered by licensing bodies such as the College of Physicians and Surgeons of Ontario or the College of Nurses of Ontario is that these bodies are already in place and have a mandate to protect the public; the advantage of creating an administrative tribunal is that it would be constituted specifically to address the problem of advance directives.) Third, decisions made by the administrative tribunal or disciplinary body could be appealed to the courts. Such appeal procedures are well established. Neither legislative sanctions nor common-law solutions alone satisfactorily address the problem of noncompliance with patients' advance directives. We recommend legislation without sanctions for noncompliance in addition to a system of graded referral of individual cases.
How should consideration of the use of advance directives be promoted? There are no published data on how many Canadians have completed advance directives. US surveys have shown that 9% of people in Wisconsin40 and 15% of Americans overall4' have completed such documents. How can more people be given the opportunity to consider the use of advance directives? (By "considering their use" we mean offering people the opportunity to complete advance directives; a public policy focusing solely on encouraging people to complete them might foster coercion and violate the principle of self-determination, on which advance directives are based.) Consideration of the use of advance directives could be promoted by public education, professional education, policy in health care facilities, legislation and remuneration. Public education (which may include advertisements in the media) should not be used merely to direct or encourage people to complete a directive but also to inform them of the problem that such directives seek to address, their purpose, the main types of directives, the procedures LE 15 JANVIER 1992
for completing them and where people can turn for further information. The professional education of health care providers, lawyers and all other counsellors on advance directives complements public education. Health care professionals should be aware of the legal status of advance directives, the need to raise the topic of directives at an appropriate time, effective methods of communication during their completion and the limitations of advance directives. Lawyers should understand the clinical situations and life-sustaining treatments involved and the need to refer clients for further discussion of their health to their physicians. Professional organizations whose members are called on to assist people to complete advance directives should make educational programs on this topic available to their members. It may be appropriate for facilities to develop a policy of making advance directives available to patients, especially if the facility also provides education for health care providers. Only education can ensure that there are staff trained to assist patients to complete directives and that physicians and other members of the health care team are prepared to implement the directives appropriately when they come into effect. Legislation recognizing the validity of advance directives could ensure that the documents are legally binding and protect physicians and other health care providers from civil liability for following them. (The Criminal Code should also be amended to protect them from criminal liability.) If the legal validity of advance directives is confirmed physicians may be more willing to recommend them to their patients and the public more willing to complete them. Remuneration of health care professionals for time spent discussing advance directives may encourage their use. It is likely that under provincial health care insurance plans at present such discussions qualify for remuneration as routine office visits or counselling. However, if advice on directives were an item in the fee schedule more physicians might be encouraged to offer it. (The perception may remain that when there is a financial incentive patients may be coerced into completing advance directives.) Remuneration of lawyers will tend to be driven more by client demand than by public policy. However, policy-makers should encourage publicly funded legal clinics to provide clients with advance directives; in addition, they should include advance directives among the services for which legal-aid remuneration is available and encourage private legal service plans (like those provided by unions) to include advance directives among the services offered. Public and professional education is necessary JANUARY 15, 1992
to facilitate the introduction of advance directives. Legislation, institutional policies and remuneration all play a role in clarifying the official status of these documents and encouraging their use. Asked to pick a single best strategy, we prefer public education. A combined strategy that makes use of several or all of the options may be even better. For example, public education would be more effective if the legal validity of advance directives were established and health care providers were educated about advance directives, so that patients requesting them could be accommodated. Despite the focus on legislation in the public debate other steps are necessary to promote the appropriate use of advance directives.
Conclusions * In principle, advance directives are a valuable method for people to express their preferences about life-sustaining treatment. * In design, directives should permit refusal of and requests for life-sustaining treatment. Instruction directives should be framed in terms of specific treatment preferences and general life values. Combined directives are preferable to instruction or proxy directives alone. No specific directive can be recommended. * Advance directives should be offered to anywho one requests them. Chronically or terminally ill will need them most, and clients who are patients their testamentary wills may be or updating making of completing one. idea to the receptive * Advance directives should be updated on the person's request, when there is a change in clinical status or admission to a health care facility, when deemed appropriate by a physician or lawyer and when the person undergoes a major life change. Those completing a directive should be advised to revise it if their preferences for life-sustaining treatment or the identity of the proxy decision-maker changes. * If competent people change their preferences the most recently expressed wishes should be followed. If incompetent patients change the preferences expressed while they were competent it is questionable whether the physician should follow the original wishes or those that would preserve the patient's life. * Advance directives should be enforced through a system of graded referral of controversial cases to institutional ethics committees, administrative tribunals or professional disciplinary boards and the courts. * Consideration of the use of advance directives should be promoted through public and professional education, health facility policy, legislation and remuneration. CAN MED ASSOC J 1992; 146 (2)
This article is the first step toward addressing the practical details of implementing advance directives. Our conclusions are likely affected by the membership of our seminar group and the problem of group decision-making. Other important questions remain: How will advance directives be made transportable; that is, made available when they are needed? Which people are best placed to give advice about advance directives? Are advance directives an advance? We believe that they are. However, as we realized and as will become apparent when advance directives are more broadly used, they contain many limitations. Having identified and addressed some of these limitations we hope that the introduction of advance directives in Canada will proceed with due caution.
References 1. Singer PA, Siegler M: Elective use of life-sustaining treatments. In Stollerman GH (ed): Advances in Internal Medicine, vol 36, Yr Bk Med Pubs, New York, 1991: 57-79 2. California Natural Death Act, 1976, Cal Code Health and Safety, s 7185-7195 (West, 1990) 3. Omnibus Budget Reconciliation Act, 1990 (US Public Law 101-508), s 4206, 4751 4. In re Quinlan (1976), 70 NJ 10 5. Cruzan v. Director, Missouri Department of Health (1990), 110 SCt2841 6. Medical Consent Act, RSNS 1989, c 279 7. Public Curator Act, SQ 1989, c 54 8. Attorney-General of BC v. Astaforoff 6CCC, 3d 498 (BCCA 1983) 9. Malette v. Shulman (1990), 72 OR (2d) 417 (Ont CA) 10. Self-Determination in Health Care (Living Wills and Health Care Proxies), Manitoba Law Reform Commission, Winnipeg, 1991 11. Bill 7, An Act to Amend the Powers of Attorney Act, 1st Sess, 35th Leg Ont, 1990 12. Bill 8, An Act Respecting Natural Death, 1st Sess, 35th Leg Ont, 1990 13. Bill 109, Consent to Treatment Act, 1st Sess, 35th Leg Ont, 1991 14. Bill 110, Consent and Capacity Statute Law Amendment Act, 1st Sess, 35th Leg Ont, 1991 15. Bill 108, Substitute Decisions Act, 1st Sess, 35th Leg Ont, 1991 16. Bill 74, An Act Respecting the Provision ofAdvocacy Services to Vulnerable Persons, 1st Sess, 35th Leg Ont, 1991 17. Bill C-203, An Act to Amend the Criminal Code (Terminally Ill Persons), 3d Sess, 34th Parl, 1989-91 18. Lo B, McLeod GA, Saika G: Patient attitudes to discussing life-sustaining treatment. Arch Intern Med 1986; 146: 16131615 19. Shmerling RH, Bedell SE, Lilienfeld A et al: Discussing cardiopulmonary resuscitation: a study of elderly outpatients. J Gen Intern Med 1988; 3: 317-321
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20. Frankl D, Oye RK, Bellamy PE: Attitudes of hospitalized patients toward life-support: a survey of 200 medical inpatients. Am JMed 1989; 86: 645-648 21. Gamble ER, McDonald PJ, Lichstein PR: Knowledge, attitudes and behavior of elderly persons regarding living wills. Arch Intern Med 1991; 151: 277-280 22. Emanuel LL, Barry MJ, Stoeckle JD et al: Advance directives for medical care - a case for greater use. N Engl J Med 1991; 324: 889-895 23. Pellegrino ED, Thomasma DC: For the Patient's Good: the Restoration of Beneficence in Health Care, Oxford U Pr, New York, 1989: 136-147 24. Fisher RH, Meslin EM: Should living wills be legalized? Can Med Assoc J 1990; 142: 23-26 25. Emanuel LL, Emanuel EJ: The Medical Directive: a new comprehensive advance care document. JAMA 1989; 261: 3288-3293 26. Lambert P, Gibson JM, Nathanson P: The Values History: an innovation in surrogate medical decision making. Law Med Health Care 1990; 3: 202-212 27. Advance Directives for Health Care: Planning Ahead for Important Health Care Decisions, New Jersey Commission on Legal and Ethical Problems in the Delivery of Health Care, Princeton, NJ, 1991 28. Molloy DW, Mepham V: Let Me Decide, 2nd ed, McMaster U Pr, Hamilton, Ont, 1990 29. Everhart MA, Pearlman RA: Stability of patient preferences regarding life-sustaining treatments. Chest 1990; 97: 159-164 30. Silverstein MD, Stocking CB, Antel J et al: Amyotrophic lateral sclerosis and life-sustaining therapy: patients' desires for information, participation in decision making, and preferences for life-sustaining therapy. Mayo Clin Proc 1991; 66: 906-913 31. Emanuel LL, Barry MJ, Stoeckle JD et al: A detailed advance care directive: practicality and durability [abstr]. Clin Res 1990; 38: 738A 32. Teno J, Mor V, Fleishman J: Stability of preferences among patients with HIV-related disease [abstr]. Clin Res 1991; 39: 632A 33. Weisstub DN: Enquiry on Mental Competency: Final Report, Queen's Printer for Ontario, Toronto, 1990 34. Appelbaum PS, Grisso T: Assessing patients' capacities to consent to treatment. N Engl J Med 1988; 319: 1635-1638 35. Singer PA, Lowy FH: Refusal of life-sustaining treatment: the Malette case and decision-making under uncertainty. Ann R Coll Physicians Surg Can 1991; 24: 401-403 36. Danis M, Southerland LI, Garrett JM et al: A prospective study of advance directives for life-sustaining care. N Engl J Med 1991; 324: 882-888 37. Making Health Care Decisions: a Report on the Ethical and Legal Implications of Informed Consent in the PatientPractitioner Relationship, vol 1, President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Washington, 1982 38. Miles SH, Singer PA, Siegler M: Conflicts between patients' wishes to forgo treatment and the policies of health care facilities. NEngl J Med 1989; 321: 48-50 39. Singer PA, Pellegrino ED, Siegler M: Ethics committees and consultants. J Clin Ethics 1990; 1: 263-267 40. Shapiro RS, Tavill F, Rivkin G et al: Living will in Wisconsin. Wis Med J 1986; 85: 17-23 41. Harvey LK, Shubat SC: Physician and Public Attitudes, Am Med Assoc, Chicago, 1989: 113
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