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Society's Choices: Social and Ethical Decision Making in Biomedicine Limiting Life-Prolonging Medical Treatment: A Comparative Analysis of the President's Commission and the New York State Task Force BARUCH A. BRODY, Ph.D. Professor of Medicine, Baylor College of Medicine In 1983, the President's Commission for the study of Ethical Problems in Medicine and Biomedical and Behavioral Research produced a report on the topic of limiting life-prolonging therapy entitled Deciding to Forego Life-Sustaining Treatment.1 Three years later, in 1986, the New York State Task Force on Life and the Law produced a report on some aspects of this topic entitled Do Not Resuscitate Orders. It produced in 1987 a second report on other aspects entitled Life-Sustaining Treatment: Making Decisions and Appointing a Health Care Agent. In 1992, it produced still a third report entitled When Others Must Choose.2 The report of the President's Commission has been widely acclaimed. It is often felt that its report shaped a social consensus on this difficult topic. On the other hand, the work of the Task Force has attracted considerable criticism and controversy. It seems to have been much less of a success. If one accepts these perceptions, then it seems natural to raise a series of questions in the hope of learning what makes some commissions work better than others. Was it a function of the membership? Did the President's Commission benefit, for example, from not attempting to include representatives of many diverse religious groups, all of whose concerns needed to be addressed? Was it a function of how the work was done? Did the President's Commission benefit from holding many public hearings before it began shaping its report? Was it a function of the duration of the commission? Did the President's Commission benefit from knowing that it was working under a strict time limit and that it would have
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Society's Choices: Social and Ethical Decision Making in Biomedicine to accomplish its goals in that confined period? Such procedural questions are inevitable if the above-mentioned perceptions are accepted. The main thesis of this paper, to which the bulk of it is devoted, is that these perceptions are incorrect, both about the President's Commission and about the New York State Task Force. The report of the President's Commission was a success in summarizing a consensus that had emerged, and in beginning the process of moving beyond it, not in shaping that consensus. The reports of the New York State Task Force were a success in producing legislation that incorporated this consensus, and the controversy was nothing more than the expected accompaniment of any important legislative initiative. The nature of their successes differed because they were operating in different contexts and had different roles. A second thesis, to which we shall return briefly in the conclusion, is that the structural and procedural differences mentioned above are reflections of these different contexts and roles, and that the proper conclusion to be drawn is that structure and process should be a function of context and roles. The strategy for my analysis is as follows: In the rest of this introduction, I will present a statement of the current consensus about limiting life prolonging treatment. For the sake of this analysis, I will take its validity for granted. In the next two sections, I will discuss the relation of the work of the two groups to the current consensus, to the context in which they operated, and to their roles. It is in those two sections that I will defend my claims about the nature of their successes. Finally, in the conclusion, I will briefly return to some of the structural and procedural issues. I offer the following, which is a modification of an analysis recently presented by Meisel,3 as my statement of the current consensus: The mere fact that some treatment exists that would prolong the life of some patient does not by itself suffice to justify providing that therapy to that patient, because extending life by providing the treatment in question may not be beneficial to the patient in light of the patient's values and patients have a right to refuse therapy whose provision they judge to be against their interests. Both competent and incompetent patients have that right to refuse life-prolonging therapy; of necessity, the way in which that right is exercised is different in the two cases. Despite the differences, decision making for both types of patients should usually occur in the clinical setting without recourse to the courts. The main role of legislatures is to see that these rights are adequately recognized in law, and the main role of health care institutions is to insure that there are proper policies and mechanisms in their institutions for facilitating proper processes for such decision making and for insuring that they are appropriately documented.
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Society's Choices: Social and Ethical Decision Making in Biomedicine These refusals may be of all forms of therapy, including artificial nutrition and hydration, and they may involve both the withholding of life preserving therapy and the withdrawing of such therapy. Such refusals of life-prolonging therapy must be distinguished both from active euthanasia and from assisted suicide. When the patient is not competent, the attending physician, who normally makes that decision of incompetency, may rely upon a patient's advance directive to refuse treatment incorporated in such documents as living wills. If there is no living will or its equivalent, the patient's right to refuse treatment may be exercised on behalf of the patient by a surrogate decision maker appointed by the patient in advance (by use of such mechanisms as the durable power of attorney) or specified by some statutory scheme (usually, family members in some ordering of priority). The surrogates should apply a substituted judgment standard, or, if they cannot, a best interests standard. The same principles should apply to parental decision making about life-prolonging therapy for their children, especially severely ill newborns, but the emphasis must be on the child's best interests since the substituted judgment standard cannot apply. With this statement of the current consensus in mind, I turn to an analysis of the work of the President's Commission and of the New York State Task Force on limiting life-prolonging treatment. ACCOMPLISHMENTS OF THE PRESIDENT'S COMMISSION As indicated above, the received view is that the report of the President's Commission, Deciding to Forego Life-Sustaining Treatment, was very successful in shaping the current consensus about decisions to limit life prolonging treatment. My argument will be that this claim is much too simplistic, and that once the factors of context and role are taken into account, a much more complex picture emerges. In particular, we shall see (a) that most of the elements of the consensus were prominently present in the public debate before the appearance of that report; (b) that the report organized and added one crucial element to, offered a sound foundation for, and placed an official imprimatur on, a very new consensus that had just emerged; (c) that the report raised many crucial issues that were to become central to the later debate, and adopted positions, often quite ambiguous, on these issues. This ambiguity was possible because the report was not designed to lead to any specific legislation or hospital policy. None of this is to say that the report was unsuccessful. It is rather to say that its success needs to be understood in terms of its context and its role.
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Society's Choices: Social and Ethical Decision Making in Biomedicine The report contains a detailed account (pp. 9-11 and pp. 259-74) of its own genesis and it is worthwhile noting a number of major points made by the Commission to which we shall return. The first is that the whole topic of limiting life-prolonging treatment was not part of the statutory mandate for the President's Commission. The definition of death was however part of that mandate and the Commission began work on that topic in January of 1980. But in the course of hearings on that topic, it was led to realize that a report was also needed on limiting care to certain patients, especially vegetative patients. Secondly, the report was seen by the Commission as an outgrowth of what it had to say in two other reports which dealt with mandated topics, its report on decision making, Making Health Care Decisions4 and its report on the allocation of health care resources, Securing Access to Health Care.5 Finally, as in the case of all of its other activities, the Commission began with public hearings on the topic and then moved on to extensive internal deliberations aided by external reports and additional public comments. Throughout the work on its report, the Commission's process was a very open process. With this understanding of the Commission's process, let us turn to the substance of its report. A comparison of the principles of the current consensus with the summary of the 24 conclusions contained in the introduction to Deciding to Forego Life-Sustaining Treatment reveals both considerable overlap and some differences. We will first examine the extent to which our consensus principles are incorporated in its summary conclusions and we will then examine those of its summary conclusions which are not included in our consensus principles. Our principle (a) is incorporated in its summary conclusions (1), (2), and (21b). Our principle (b) is incorporated in its summary conclusions (9), (11), (17c), and (20), although the reference to limitations on surrogate authority in (9a) and (21c) is not fully in accord with principle (b), and will be analyzed below when we discuss ambiguities in the report. Our principle (c) is incorporated in its summary conclusions (6), (9e), and (18), with some useful comments about when recourse to the courts would be appropriate. Our principle (d) is incorporated in its summary conclusions (7), (9b), (9d), (17a), (22), and (23). Our principle (e) is incorporated in its summary conclusions (5) and (11). Our principle (g) is incorporated in its summary conclusion (8) about the assessment of incompetency and (9c) about living wills, although (9c) offers only lukewarm support for living wills, preferring the use of durable powers of attorney. Our principle (h) is incorporated in its summary conclusions (9a) and (9c). Finally, our principle (i) is incorporated in its summary conclusions (13), (15), and (17). There is no doubt then that the President's Commission advocated nearly all of the elements of the current consensus. The only exception is principle (f), which is not clearly articulated in the
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Society's Choices: Social and Ethical Decision Making in Biomedicine summary of the conclusions but is discussed in the text of the report. We shall return to it below when we discuss ambiguities in the report. What other conclusions are presented in the report which are not part of our list of consensus principles? A few are unproblematic. These include summary conclusion (4) calling for better options for those who refuse life-prolonging therapy, summary conclusion (16) calling for decision makers to have access to the best up-to-date information, and summary conclusion (24) calling for better education of health care professionals about these issues. Much more important are summary conclusions (3b), (3c), and (12) on the impact of resource allocation on this type of decision making, summary conclusion (10) on the special status of PVS patients, and summary conclusion (14) on the lack of any need to provide futile care to severely ill newborns. We shall return to these issues below when we discuss ambiguities in the report. Although there are differences then between the principles of the current consensus and the summary conclusions of the President's Commission, differences which we shall discuss below, they should not blind us to the obvious tremendous overlap between the current consensus and the views of the President's Commission. All of this leads us to ask about the role of the Commission in forging that consensus. To what extent was the consensus present before the appearance of Deciding to Forego Life-Sustaining Treatment? What were its contributions to the emergence of that consensus? In order to answer these questions, we need to examine the report in the context of the discussions about limiting life-prolonging therapy in the period 1975-1983. Our goal will not be to identify who said what first; it will be, instead, to identify major trends in prominent discussions during that crucial period. I want to begin with several prominent discussions in the professional literature. The first is a well-known and very influential article in the New England Journal of Medicine in 1976 authored by the Clinical Care Committee of the Massachusetts General Hospital.6 The article describes a newly introduced system for classifying patients according to the level of therapeutic effort they would receive. Patients in Class C had selective limitations placed on the therapeutic measures provided while patients in Class D had all therapeutic measures, except those indicated for comfort, discontinued. Many of the elements of the current consensus are clearly present in that policy. It is recognized that life-prolonging treatments may be inappropriate in some cases. That decision is to be made in the hospital without recourse to the courts. The role of the institution is to insure that there are policies and procedures in place (including a consultation committee) to facilitate such decision making and its documentation. All forms of therapy may be withheld or withdrawn. Other elements of the current consensus are missing from that document. It places the locus of decision
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Society's Choices: Social and Ethical Decision Making in Biomedicine making in the attending physician rather than in the patient or those who speak for the patient. The only exception is for Class D patients, where consultation with, and concurrence of, the family is required. As a result of this emphasis on physician decision making, there is no mention of certain crucial patient-centered elements of the consensus such as the rights of patients to refuse treatment, the use of advance directives, and the family as surrogate decision makers attempting to apply the substituted judgment rule. Another important discussion was published in Critical Care Medicine in 1978 by members of the Critical Care faculty at Presbyterian University Hospital in Pittsburgh.7 It also described a system introduced in 1975 for classifying patients according to the level of therapeutic effort they would receive. This system is closer to the system currently used in many institutions, as it divides patients into four categories: total support, all but CPR, no extraordinary measures (ranging all the way from ICU admission to parenteral nutrition), and dead. The system described contains all of the elements of the current consensus contained in the Massachusetts General Hospital system. Most crucially for our purposes, the policy required that orders about the level of care to be provided be accompanied by a progress note indicating that a discussion had taken place with the patient or the family and that they agreed with the order. As a result of that change from physician-centered decision making, the document also referred in its discussion of the policy to the patient's right to refuse treatment and to advance directives such as living wills. So the Pittsburgh publication contains many of the patient-centered elements of the current consensus. The only ones to which I see no allusion are the emphasis on substituted judgment by surrogate decision makers and the question of parental decision making for newborns. I am not claiming that the Pittsburgh policy is a fully articulated statement of nearly all of the elements of the current consensus; the patient-centered elements are not given the emphasis they are given either in the report of the President's Commission or in the current consensus. What I am saying is that the Pittsburgh policy moves us much closer to most of the elements of that consensus. Many elements of that consensus were also present in two statements by the Judicial Council of the American Medical Association, published in 1982.8 One discussed issues related to quality of life in both newborns and adult patients and the other discussed issues related to terminal illness. Both statements affirmed that life-prolonging therapy can sometimes be withheld or withdrawn. Both statements assigned a significant role to those who speak for the patient, although parents of newborns are identified as the decision makers for them while the wishes of the family speaking on behalf of the adult patient are only factors to be considered by the physician who makes the decision. Both statements dealt with all forms of life prolonging therapy.
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Society's Choices: Social and Ethical Decision Making in Biomedicine There are many more statements in the professional medical literature in the period 1975-1982 related to limiting life-prolonging medical treatment; we have only presented a small selection from that much more extensive literature, a literature whose history deserves a much fuller analysis. But we have seen that Deciding to Forego Life-Sustaining Treatment goes beyond what was already in the professional literature primarily by emphasizing the point that the organizing theme for all policies and decisions to limit care should be the decisions of the patient or those who speak on behalf of the patient, because the patient has the right to refuse life prolonging therapy. Even that theme was present in some of the professional literature, but none of that literature made it the organizing theme. In this way, Deciding to Forego Life-Sustaining Treatment is an application of the general principles about decision making enunciated in Making Health Care Decisions. We turn from the medical literature to legal developments. I want to emphasize at least two developments, the development of natural death statutes and the development of right-to-die decisions in the courts. We shall see in that material ample evidence of the acceptance of most of the elements of the current consensus. California passed the first natural death statute in 1976. It was followed in 1977 by Arkansas, Idaho, Nevada, North Carolina, Oregon, and Texas.9 By the time the Commission report came out, 14 states and the District of Columbia had passed such statutes. This is not the place to offer a full analysis of all of them. We shall only focus on the extent to which the first seven, which antedated by several years the work of the President's Commission, incorporated the elements of the current consensus. The full force of principle (a) of the current consensus, that life-prolonging care can be withheld because the patient has a right to refuse it, is the whole point of all of these natural death statutes. But it is worth noting that several of them (Arkansas, California, Idaho, and North Carolina) begin with an explicit statement of that right. I note, parenthetically, that Arkansas defines it as both the right to refuse such therapy and the right to request it and that North Carolina defines it as the right to a peaceful and natural death. It is also worth noting that while most of them (California, Idaho, Nevada, Oregon, and Texas) confine their provisions to patient refusals in certain cases, thereby seeming to limit the recognition of patient rights, all who do so make it clear that the statute does not limit any more general right to refuse treatment. Principle (b), that the right extends to incompetent as well as competent patients, is once more the whole point of these statutes, but it is worth noting that two of the statutes (Arkansas and North Carolina) add more provisions which provide for surrogate decision making on behalf of incompetent patients. As all of the statutes allow attending physicians to rely upon directives without the authorization of a
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Society's Choices: Social and Ethical Decision Making in Biomedicine court, they all incorporate principle (c) of the current consensus. None of them talk about the role of health care institutions mentioned in principle (d), but they all exemplify the role for legislatures mentioned in principle (d), viz., seeing that the right to refuse treatment is recognized in the law. Five of the seven (California, Idaho, Nevada, Oregon, and Texas) both offer very broad definitions of the forms of therapy that are covered and explicitly cover both withdrawings and withholdings of these therapies; the other two offer somewhat more limited definitions of the forms of therapy covered, but North Carolina does explicitly cover both withdrawings and withholdings of the covered therapies. So while none explicitly mention artificial nutrition and hydration (perhaps because that issue was not very prominent in 1976-1977), principle (e)'s spirit is found in all seven statutes. Principle (f), the distinction between authorizing the limiting of life prolonging therapy and authorizing suicide or euthanasia, is articulated in six of the seven statutes (all but the Arkansas statute). Principle (g), the recognition of living wills, is, of course, the whole point of these statutes. Elements of principles (h) and (i), about other aspects of surrogate decision making, are found in several of the statutes, although that is obviously not their main point. Of particular importance is the fact that Arkansas addressed the issue of pediatric patients. The conclusion that emerges from this analysis is that by 1977, seven states had passed statutes that incorporated most of the elements of the current consensus. And, of course, eight more jurisdictions passed such statutes by the time that the report of the Commission came out. Of particular importance is that these statutes, unlike the professional medical policies analyzed above, were firmly grounded in an emphasis on the right of individuals to refuse therapy. However, some elements of the current consensus (the role of institutional policies, the standards for surrogate decision making, and the use of durable powers of attorney) were not present, usually because they were not relevant to the purposes of the statutes. The period in question also saw the appearance of many fundamental court decisions about limiting life-prolonging therapy. We will focus on decisions that predated the work of the President's Commission. The most important are the New Jersey case of In re Quinlan (1976), 10 the Florida case of Satz v. Perlmutter (1978),11 the New York cases of In re Eichner (1981),12 and In re Storar (1981),13 and the Massachusetts cases of Superintendent of Belchertown State Hospital v. Saikewicz (1977),14 In re Dinnerstein (1978),15and In re Spring (1980).16 Nearly all of the principles of the current consensus that were relevant were adopted in 1976 by the Supreme Court of New Jersey in the case of Karen Quinlan, where the father of a PVS (persistent vegetative state) patient was appointed as her guardian with the authority to authorize the
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Society's Choices: Social and Ethical Decision Making in Biomedicine discontinuation of all extraordinary life-prolonging therapy. This decision overruled the opinion of a lower court that thought that the decision should be left in the hands of the medical profession. Treatment could be withdrawn because the patient's right to refuse treatment was to be exercised on her behalf by her father. So the opinion incorporated principles (a) and (b) of the current consensus as they apply to that case. The opinion also ruled that recourse to a court would be inappropriate, so it adopted principle (c) of the current consensus. In calling for hospital processes including consultation with an ethics committee (not necessarily what is currently meant by that term), it incorporated much of principle (d). In authorizing the withdrawal of a respirator, it incorporated much of principle (e). It adopted principle (f) by explicitly distinguishing the refusal of life-prolonging therapy from suicide. Finally, since the court authorized a parent to make the decision for his child, it incorporated some components of principle (i). Moreover, it explicitly indicated that he was to do so on the basis of his best judgment as to whether she would refuse the therapy; this emphasis on substituted judgment incorporates some of principle (h). None of the other principles were relevant in that case. So the opinion in the Quinlan case was a major statement of the current consensus. Perhaps the one exception was its somewhat confusing discussion of ordinary and extraordinary measures. In fact, when the respirator was removed from Karen Quinlan, she lived for nine years sustained by antibiotics and nasogastric feedings. It is hard to be sure, however, whether this represented the wishes of her father or the court's unwillingness to accept the full force of principle (e). In 1978, a Florida District Court of Appeal authorized a 73-year-old competent ALS patient, Abe Perlmutter, to remove his respirator. It based its decision on a broad appeal to the patient's rights of self-determination and privacy, thereby incorporating principle (a). Because the case involved a withdrawal of life-prolonging therapy, the decision incorporated components of principle (e). It explicitly incorporated principle (f) by distinguishing the removal of the respirator from suicide. When the Supreme Court of Florida affirmed the decision in 1980, it called upon the legislature to legislate in this area, thereby incorporating an element of (d). The Saikewicz case, the first of our Massachusetts cases, represents the first of our cases that challenged a component of the current consensus, principle (c). In its decision, the Supreme Judicial Council of Massachusetts ruled in 1987 that decisions involving incompetent patients must be brought to a court. Nevertheless, even that decision incorporated many components of the current consensus. It incorporated principle (a) by grounding withholdings of therapy in the right of patients to privacy and self-determination. It incorporated principle (b) by insisting that incom-
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Society's Choices: Social and Ethical Decision Making in Biomedicine petent patients have the same right to refuse treatment as competent patients, although the process would have to be different. It explicitly adopted the substituted judgment principle, thereby incorporating elements of (h). This emphasis on judicial intervention was limited in the subsequent cases of In re Dinnerstein (1978) and In re Spring (1980). So while it is true that one element of the current consensus was rejected by the Massachusetts courts in the period before the appearance of the Commission's report, it is also true that many more elements of that consensus were affirmed by those courts and by the subsequent professional literature reflecting on its decisions. The court that was the furthest from adopting what was to become the consensus was the New York Court of Appeals in two companion cases, In re Eichner and In re Storar (1981). In the former case, the New York Court of Appeals upheld a decision that a respirator could be removed from a PVS patient who had clearly expressed his wishes that he not receive such life prolonging therapy in such a case. In the latter case, the court rejected a decision authorizing a denial of life-prolonging blood transfusions to a never competent, retarded patient. Several observations need to be made here: (1) the elements of the current consensus most clearly rejected were the insistence in Eichner on clear and convincing evidence of the patient's previously expressed wishes rather than substituted judgments by others about what the patient would have wished, thereby rejecting a portion of (h), and the unwillingness in Storar to rely upon any surrogate's judgment about the patient's best interests, thereby rejecting another portion of (h); (2) nevertheless, the Court of Appeals still accepted limitations on life prolonging therapy based upon the right to refuse treatment, thereby accepting principle (a), and extended that to incompetent patients, thereby accepting principle (b). As Eichner involved the withdrawing of a respirator, the Court of Appeals accepted an important element of (e). Since living wills are excellent examples of clear and convincing evidence of the patient's previously expressed wishes, the Eichner decision laid the foundation for their recognition, thereby laying the foundation for the acceptance of (g). In short, an analysis of court decisions which preceded the work of the Commission reveals that major elements of the consensus were accepted in the most important judicial rulings on these issues. While it is true that there were some elements rejected by some courts, this cannot take away from the extent to which the judicial rulings were in consonance with both the legislation and the professional medical literature analyzed above. Our first conclusion must therefore be that most of the elements of the current consensus were prominently present and widely accepted before the appearance of Deciding to Forego Life-Sustaining Treatment. If it were needed, one could provide further evidence from both the secular and
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Society's Choices: Social and Ethical Decision Making in Biomedicine religious bioethics literature, but I believe that the evidence already presented is sufficient. What then was the role of that report in the development of the current consensus? I believe that the report of the Commission played four roles in the development of the current consensus: (1) It summarized in one well organized and authoritative statement the consensus whose elements had emerged in the years just before its work. It needs to be remembered that all of the material we analyzed was from the last ten years before the publication of its report. There is some even earlier material, but it is neither very extensive nor very authoritative. Moreover, no one other document contained all of the elements of the consensus. The report of the Commission was needed to give very authoritative approval to, and advocacy of, the full consensus that had just emerged. (2) It offered valuable criticisms (pp. 159-60) explicitly directed at the Massachusetts view about the need for judicial approval, suggesting ethics committees as an alternative, and it offered a valuable defense (pp. 132-6) of the substituted judgment/ best interests approach, thereby implicitly criticizing the New York decision in In re Storar. In these ways, it defended the new consensus against some alternatives. (3) It also placed great emphasis on durable powers of attorney for health care decision making, a tool that had not received enough attention before the report of the Commission. (4) Finally, the report made it very clear that the organizing theme for the new consensus was the patient's right to refuse treatment based upon the patient's perception of what was in the patient's best interest. Although much of the legal material we examined contained that theme, this was not as true of the professional material. There was a real need then for this emphasis. In all four of these ways, then, the report of the President's Commission made a valuable contribution to the emergence of the current consensus, even if its outline and most of its elements were widely accepted before the appearance of the report. I believe that there was another contribution made by the report, a contribution that has not been adequately noticed. On a considerable number of issues, the President's Commission took positions that went beyond the consensus then and even the consensus now. Some of the positions were not clearly articulated, but this ambiguity was possible because the report was not advocating some specific legislation or some specific hospital policy. Despite these ambiguities, the report was often the starting point for further discussions about limiting life-prolonging therapy, discussions that still continue today. The issues were: (1) What is the best form of advance directives, living wills or durable powers of attorney? (2) What are the limits of surrogate decision making, both in the case of newborns and in the case of incapacitated adults? (3) Can society legitimately prohibit active euthanasia and/or assisted suicide when requested
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Society's Choices: Social and Ethical Decision Making in Biomedicine What was the content of the reports? Do they incorporate the current consensus outlined above? Do they go beyond that consensus in valuable ways? The answer to these three crucial questions requires a careful analysis of the three reports. The initial report on DNR orders provided for a presumption for the use of cardiopulmonary resuscitation (CPR) unless the patient or the surrogate consents to the issuance of a DNR order. The report made it clear (pp. 9-12) that this approach is grounded in the value of self-determination and that refusals of CPR should therefore be honored even when the patient does not have a terminal illness (this was one of the items that was dissented from by Rabbi Bleich, a member of the Task Force associated with the Orthodox Jewish community). In these ways, the report accepted principle (a) of the current consensus. By providing for DNR orders for both competent and incompetent patients, the report accepted principle (b) of the current consensus. Although it did provide for judicial review under certain circumstances (pp. 87-8), the report's main emphasis was on decision making outside the judicial system, so it accepted principle (c) of the current consensus. By calling for legislation and for institutional policies and dispute mediation systems (pp. 49-51), the report accepted principle (d) of the current consensus. Principles (e) and (f) were irrelevant to the report's discussion, which was confined to DNR orders because of the immediate needs in New York in light of the factors noted above. The report allowed both for patients indicating in advance that they do not want CPR and for their appointing surrogates to make that decision for them. It also rejected the opinion of the Court of Appeals, at least for the case of CPR (the only therapy it covered), in that it allowed (pp. 43-4) surrogates to use the substituted judgment and/or the best interests standard. Therefore, the report accepted principles (g) and (h) of the current consensus. Finally, the report accepted (pp. 46-9) parental decision making for minor children, thereby incorporating principle (i) of the current consensus. There were some additional components of the report that went beyond the current consensus and should be noted. To begin with, it dealt with the problem of patients who have no surrogate decision maker, allowing for the writing of a DNR order when resuscitation would be futile (defined by the legislature35 as "CPR will be unsuccessful in restoring cardiac and respiratory function or that the patient will experience repeated arrest in a short time period before death occurs") or when a court directed that such an order be written (the legislature made it clear that the court could do so using either a substituted judgment or a best interest standard). Secondly, it addressed the issue, raised by the President's Commission, of limitations on surrogate decision making to refuse CPR. The Task Force (pp. 41-3) limited this authority to cases where the patient has
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Society's Choices: Social and Ethical Decision Making in Biomedicine a terminal illness, is permanently unconscious, or is so sick that resuscitative measures would probably be unsuccessful and only prolong the dying process. The legislature36 modified those standards by changing the third to refer to cases in which resuscitation would be futile and by adding the fourth possibility that resuscitation would be extraordinarily burdensome in light of the patient's condition and expected outcome. Both of these standards are quite close to the Baby Doe standards for parental surrogate decision making; more crucially, both provide far more guidance than the standard provided by the President's Commission. Thirdly, it allowed for the unilateral withholding of futile CPR at least in some cases; the precise extent of this became, as we shall see below, a matter of considerable controversy. Fourthly, it began the very difficult process of defining the role of hospital ethics committees (although it used the name of dispute mediation system), addressing such issues as who may call for their use, what happens while their work is going on, and what happens if they fail to bring about agreement (pp. 49-51). Finally, it dealt with a great many questions of concrete details, including the written documentation required for a DNR order, the conditions under which a physician can invoke the therapeutic exception to consult surrogates rather than the patient, the process for determining patient incompetency, the role of friends as surrogates, the special procedural protections needed by institutionalized patients, the need for review of DNR orders, and the validity of DNR orders after interinstitutional transfers. To summarize, when the legislature adopted with some changes the Task Force's proposed legislation, it incorporated into New York law, at least in connection with CPR, all of the relevant elements of the current consensus. Moreover, it also incorporated, and even added to, some of the crucial ideas of the Task Force that went beyond the current consensus. In light of the context in which the Task Force operated, and given its chosen role, that was a significant accomplishment. No doubt, there was considerable controversy generated both by the report and by the legislation; we shall discuss that controversy below. But none of that takes away from its accomplishments in its initial report. We turn now to the second of its reports, the 1987 report on appointing a health care agent to make decisions. Once more, context is crucial for understanding the significance of that report. In light of the New York court decisions about surrogate decision making which required surrogates to meet the very high standard of clear and convincing evidence of previous patient wishes, surrogate refusals of life-prolonging therapy were severely limited in New York. The essential point of the report was to propose legislation that would partially remedy this problem. At least in those cases in which the patient, before he or she became incompetent, appointed a health care agent (the name they proposed for the person
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Society's Choices: Social and Ethical Decision Making in Biomedicine awarded a durable power of attorney for health care), the report recommended that the agent be authorized to make decisions on all health care matters, including but not limited to decisions about life-prolonging therapy, using either the substituted judgment or the best interest standard (pp. 91-2). The legislature37 limited this provision in decisions to forego the provision of nutrition and hydration to surrogates who have reasonable knowledge, but not necessarily clear and convincing evidence, of the patient's wishes. Leaving this aside for the moment, we can certainly conclude that one of the accomplishments of the report was to lead to the passage of legislation that moved New York closer to the current consensus, at least for patients who had appointed a health care agent. The second report, like the first report, did more than that. It moved beyond the current consensus in the following ways: (1) Following the lead of the President's Commission, it emphasized durable powers of attorney over living wills. In addition to noting the traditional problem of the uncertainty of the meaning of living wills, it pointed out (pp. 75-83) that durable powers of attorney cover all health care decisions, not just decisions to forego life-prolonging therapy, and also serve as a vehicle for those who want to direct that life-prolonging therapy be continued even when their condition was grave, and not just as a vehicle for those who want to direct that it be limited. (2) It provided a mechanism for the informal determination that the patient was incompetent and that the agent therefore had authority, it dealt with the patient's right to be notified of that determination, and it structured an appeals process for that determination (pp. 152-3). All of these are crucial details for policies and laws that are to be implemented in the real world; (3) it raised and addressed (pp. 93-4) the question of liability for costs of the health care chosen by the agent. There was some controversy about this second report, although it was on the whole much less controversial than the first report. We shall discuss this controversy, and the modifications made by the legislature to deal with the freedom of conscience issues that were central to it, below. None of this takes away, however, from its accomplishments in bringing New York closer to the current consensus and in moving beyond it in important ways. The last of the reports, the 1992 report on deciding for incapacitated patients (together with its April 1993 supplement), attempted to complete the process of incorporating the current consensus into New York law. It called attention (p. ix) to the fact that the major gap in that incorporation is a failure to deal with surrogate decision making that limits life-prolonging treatments other than CPR when the patient has not appointed a health care agent and there is no living will to supply clear and convincing evidence of the patient's wishes, and it attempted to fill that gap. It also attempted to provide for surrogate decision making about health care in general when the patient has not appointed a health care agent. As one
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Society's Choices: Social and Ethical Decision Making in Biomedicine would expect, its major recommendations (pp. x-xi) were that such decision making should be allowed using the substituted judgment and/or the best interests standards. As with the other reports, this last most comprehensive report moved beyond the current consensus to deal with a large number of issues which need to be resolved if such laws are to be implemented in actual cases. Many of these issues were already treated by the Task Force in its work on DNR orders. The following seem to be the most important issues addressed: (1) Incompetent patients without surrogates: the Task Force had already addressed this issue in its DNR report, but it returned to it in this latest report. Its recommendations (pp. 157-71) were to allow the physician to provide routine care using his/her own judgment, to provide major medical treatment after approval by another physician designated by the hospital, and to forego life sustaining treatment only after additional approval by a hospital bioethics review committee; (2) Limitations on surrogate decision making to limit life-prolonging therapy: the Task Force, following in the path of the President's Commission, had already addressed this issue as well in its DNR report, but it returned to it both in the third report and in its 1993 supplement to that report. In the report itself (pp. 109-15), it limited that authority to cases (i) where the surrogate judged, using the substituted judgment and/or best interests standards, that the therapy was too burdensome and (ii) where the patient would die within six months, or where the patient was permanently unconscious, or where an attending physician and a bioethics review committee or a court concurred with the decision. In the supplement (p. 2), the last two conditions were replaced with the conditions either that two physicians concurred that the provision of treatment would be inhumane or extraordinary under the circumstances or that the decision was in accord with the reasonably known wishes of the patient (3) Issues of futility: as in the CPR report, the new report allowed for the unilateral withholding of futile therapies (now called therapies without medical benefit) in some cases. The clearest case (pp. 259-60) is where life-prolonging treatment can be limited for incompetent patients with no surrogates if the attending physician, with the concurrence of a second physician designated by the hospital, judges that the patient will die imminently even if the treatment is provided. Restrictions on that provision, together with a fuller discussion of the Task Force's views on futility, will be discussed below when we discuss the controversies surrounding its work (4) The role of bioethics review committees: The Task Force had already begun working on the role of bioethics committees in hospitals in its DNR report, but it saw them in that report serving only in an advisory capacity. This may explain the name given to them in that report, where they were seen as one of several alternative "dispute mediation systems." The new report goes way beyond that. Such committees are now
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Society's Choices: Social and Ethical Decision Making in Biomedicine mandatory, and there are certain cases of limiting life-prolonging therapy (e.g., from incompetent patients without surrogates) in which their prospective approval is now required. As a result, the report (pp. 137-55) now contains extensive provisions about composition, procedure, documentation, etc. (5) Finally, as a continuation of modifications made by the legislature in response to criticisms of the Task Force's second report, the third report contains (pp. 187-93) extensive provisions protecting the right of conscientious objection by institutions and providers. We will return to these provisions below when we talk about the controversies surrounding the Task Force's work. Having reviewed the content of all three reports, and some aspects of the legislation adopting, in a modified fashion, the first two reports, what can we say in response to our initial questions about the content of the Task Force's reports? I think that we can say that the reports were based primarily on the current consensus. I think we can say that the legislation based upon them incorporated into New York law much of the current consensus, and that what is missing will be incorporated if and when the proposed legislation in the third report is enacted into law. I think that we can say that the reports and the legislation based upon them also attempted to deal with many crucial issues left unresolved by the current consensus. In light of the context in which the Task Force operated, and given its legislative role, these are very considerable accomplishments. But what about the controversies surrounding the work of the Task Force? Don't they reveal some very fundamental problems and shortcomings either in the content of the reports or in the operating methods of the Task Force? In order to answer these questions, we need to look more carefully at those controversies. There is one that I want to note and to then put aside. This is the internal controversy within the Task Force represented by the dissenting opinions of one of its members, Rabbi J. David Bleich. In each of the reports on life-prolonging therapy, Rabbi Bleich dissented because of his strong moral/religious convictions, based on his reading38 of the Orthodox Jewish sources, that the goal of decision making should be ''. .. cure or, de minimis, maximum prolongation of life." 39 This led him to want to confine the writing of DNR orders to cases in which little or nothing can be gained by resuscitation and to want to limit the authority of surrogates, appointed by the patient or by the law, to refuse life-prolonging therapy. These dissents have not, as far as I can tell, attracted that much of a following outside of his own particular community, so I will not focus on them here. Most of the controversy centered around the initial DNR report and the legislation based on it. Fortunately, a great deal of the material associated with that controversy was presented and analyzed in a 1990 confer-
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Society's Choices: Social and Ethical Decision Making in Biomedicine ence at Union College, the proceedings of which were to shortly appear. 40 I think that there are really several different issues at stake in that controversy, and I want to analyze each of them separately. Two of the controversies dealt with items of detail that were readily correctable and were corrected in the 1991 amendments to the DNR statute.41 The first had to do with whether or not patient and/or surrogate agreements to DNR orders had to be in writing. The original statute required written agreements from surrogates, although oral agreements from patients were acceptable. Despite this clear difference, it was widely reported that many hospitals required written agreements both from patients and from surrogates. It was also widely believed that this requirement was burdensome on staff and difficult for patients and/or surrogates. All of this led to the claim that increased paperwork and inhumane demands on patients and/or families, rather than improved discussion and communication, were the main outcomes of the statute. 42 The 1991 amendments resolved this problem by allowing both surrogates and patients to agree orally to a DNR order, requiring only that physicians record that agreement in the medical record. The second had to do with DNR orders on nonhospitalized patients who were anticipated to suffer an arrest at home. Would the emergency medical technicians have to resuscitate them? Several clinicians and family members had highlighted the difficulties posed by inadequate attention to that issue.43 The 1991 amendments clarified the procedures for such orders being written and honored, addressing even the very difficult question of what to do when family members insist to the emergency medical personnel that resuscitative efforts be attempted despite such orders. These controversies are reflective of what you would expect when broad philosophies are operationalized in specific legislation; important problems about details that were not anticipated emerge. The occurrence of these controversies is a sign of a problem only if they persist because of legislative inaction. In fact, however, the legislature did correct these problems. If there were controversies that reflected problems with the work of the Task Force, they had to be more fundamental controversies. Two possibilities exist. The first was the controversy over whether or not it was appropriate to discuss DNR orders with patients who were competent rather than with their family members. There was a feeling on the part of some that this was inhumane and inappropriate. This claim is, of course, a challenge to the fundamental presuppositions of the current consensus (a) that the foundation of limiting life-prolonging therapy is the decision of the competent patient that the benefits of such therapy are not sufficient and (b) that all surrogate decision making is an attempt to deal with cases in which the patient is no longer competent. Both the Task Force's initial report and the DNR legislation based on it allowed for a carefully defined exception to
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Society's Choices: Social and Ethical Decision Making in Biomedicine consulting patients when that would pose a serious threat of an immediate and severe injury to the patient, but both continued to insist upon the fundamental validity of the current consensus. I find it hard to fault the Task Force for doing so. The second was the controversy over futile DNR orders. The claim was made that the Task Force's report, and the legislation based upon it, required the provision of CPR even when it was futile as long as the competent patient or the incompetent patient's surrogate insisted on it. The only case where the report and the legislation explicitly and unambiguously allowed physicians to write DNR orders on the grounds of futility was when there was no surrogate available. Many felt that this led to inappropriate resuscitative efforts. This controversy is not about details, but about a fundamental issue of principle. It is not about a challenge to the current consensus, but about what the Task Force did when it went beyond the current consensus. Does this controversy, which was probably the most contentious controversy surrounding the Task Force's work in this area, reveal a fundamental shortcoming in its approach? Before answering this question, I want to note the Task Force's own response to this issue. Although Commissioner Axelrod44 attempted to defend the above understanding of the law at the Union College conference, arguing to an unsympathetic audience that futile resuscitation was not that common, the Task Force has adopted a different approach: (a) Since 1988, the Department of Health, with the support of the Task Force, has maintained the view that despite the lack of an explicit provision saying so, the law creates no requirement to provide futile CPR so long as physicians don't use the invocation of futility so commonly as to create a new system of unwritten DNR orders.45 In the current proposed legislation, that view is incorporated in the provision that physicians are not required to provide at the request of a surrogate any form of care they "would have no duty to provide at the request of a patient with decision-making capacity."46 Unfortunately, that concept is left undefined both in the report and in the legislation (b) At the same time, the final version of the current proposed legislation 47 actually makes it harder to invoke futility even in decision making for incompetent patients without surrogates since it imposes the additional requirement that the provision of the life-prolonging treatment "would violate acceptable medical standards." It seems clear to me that the Task Force has not yet found an acceptable solution to this most vexing problem, one that has produced tremendous controversy. In a crucial footnote in the third report (p. 203), it admits that its own members are split on this issue. But this failure is hardly a criticism of the Task Force. The uncertainties it feels about this issue are reflective of a lack of a social consensus rather than of a Task Force failing. When the President's Commission raised this issue but failed to resolve it,
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Society's Choices: Social and Ethical Decision Making in Biomedicine this gave rise to continued discussion but not to criticism of the President's Commission. When the New York Task Force failed to resolve it, there was controversy and criticism. Why the difference? I think that it was due to the fact that the ambiguity was left in legislation that people had to live with on a day-to-day basis, rather than in a general policy statement. Once more, we see the importance of understanding context and role when we assess accomplishments and failures. Let me conclude with a brief analysis of the controversies surrounding the health care agent report and the resulting legislation. The two major issues, raised primarily by the Catholic Conference, related to surrogate decision making to limit the provision of nutrition and hydration and to protecting the rights of conscience of individuals and institutions. Resolving the first issue in the legislative process did require a modest withdrawal from the current consensus, since surrogate decisions to limit such therapies must by statute be based upon more substantial evidence of patient wishes than decisions to limit other therapies. Resolving the second issue in the legislative process actually moved New York beyond the current consensus in very sensitive and informative ways. New York now has separate and very thoughtful rules on these matters. If we see the Task Force's efforts as part of a larger legislative process, then a quick analysis suggests that this larger process worked very well to insure that the resulting legislation was sensitive to the context of a state in which there is tremendous religious/ethical pluralism on the difficult questions raised by the limiting of life-prolonging therapy. What are we to conclude then about the accomplishments of the New York State Task Force in its work on limiting life-prolonging therapy? I would conclude that if its third report is incorporated into legislation, it will have succeeded, in a context in which these issues were very controversial, in incorporating the current consensus into law, in making that consensus operational by filling in many of the details, and in moving beyond that consensus in important ways. Some controversy surrounding its work was inevitable as broad policy was incorporated into legislation and followed on a daily basis, but the New York legislative process has successfully handled much of that controversy. The remaining controversy about futility is a very different matter, but its continuation is more of a reflection on a current social uncertainty about that issue than a reflection on the work of the Task Force. CONCLUSION The analysis we have offered of the President's Commission and of the New York State Task Force has shown the centrality of the understanding of context and of role in the assessment of these two commissions. This is,
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Society's Choices: Social and Ethical Decision Making in Biomedicine of course, the main thesis of the paper. But I want in this conclusion to add a speculative suggestion relating to the structure of, and the processes used by, these two commissions. In particular, I want to suggest that their different contexts and roles made different structures and processes appropriate for these two groups. If your role is to develop, and to serve as advocates for, legislation in a context in which there is much disagreement on the topic of the proposed legislation, it is probably very important that the many groups (including the religious groups) with the diverse views on the topic be represented in the process of developing the legislation so that as few as possible feel that the legislation is being imposed on them. It may well be a good idea to first try to work out a common legislative proposal in informal private discussions, allowing for less posturing and for more attempting to find a common consensus, and to present it for public discussion only after a common plan has emerged. Given the vagaries of legislative timetables and given the need to fashion further compromises in a legislative process, it is probably a mistake to set a firm date for the conclusion of activities. The situation is very different if your role is to articulate and systematize a recently emerged consensus and to begin discussions of moving beyond the consensus. Here, what may be needed is a very public process, where the diverse groups appear and present their positions before a group of well-respected individuals (with a strong staff) who are good at listening and synthesizing. It is, moreover, easier to talk of a limited time frame for these activities. These are, of course, very speculative claims, but I find them quite plausible. Moreover, they help complete the explanation of the successes of the two commissions. I do think therefore that they are deserving of serious consideration. NOTES 1. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment (Washington, D.C.: U.S. Government Printing Office, 1983). 2. The New York State Task Force on Life and the Law, Do Not Resuscitate Orders (New York: Task Force, 1986), Life-Sustaining Treatment: Making Decisions and Appointing a Health Care Agent (New York: Task Force, 1987), and When Others Must Choose (New York: Task Force, 1992). That last publication is supplemented by Supplement to Report and Proposed Legislation (New York: Task Force, 1993). 3. Meisel, A. "The Legal Consensus about Forgoing Life-Sustaining Treatment: Its Status and its Prospects" Kennedy Institute of Ethics Journal vol. 2 (1993) pp. 309-45. 4. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Making Health Care Decisions (Washington, D.C.: U.S. Government Printing Office, 1982). 5. President's Commission for the Study of Ethical Problems in Medicine and Biomedi-
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Society's Choices: Social and Ethical Decision Making in Biomedicine cal and Behavioral Research, Securing Access to Health Care (Washington, D.C.: U.S. Government Printing Office, 1983). 6. Clinical Care Committee of the Massachusetts General Hospital, "Optimum Care for the Hopelessly Ill" New England Journal of Medicine vol. 295 (1976) pp. 362-4. 7. Grenvik, A. et al. "Cessation of Therapy in Terminal Illness and Brain Death" Critical Care Medicine vol. 6 (1978) pp. 284-91. 8. Judicial Council, Current Opinions of the Judicial Council of the American Medical Association (Chicago: American Medical Association, 1982). The opinions in question are numbered 2.10 ("Quality of Life") and 2.11 ("Terminal Illness"). 9. The statutes in question are Ark. Stat. Ann. 82-3801-3804 (March 30, 1977), 1976 Cal Stat Chapter 1439, Health and Safety Code, 7185-7195 (Sept. 30, 1976), Idaho Code 39-4501-4508 (March, 1977), Nev. Rev. Stat. 449.550-590 (May 6, 1977), N.C. Gen. Stat. 90-320-322 (July 1, 1977), Or. Rev. Stat. 97.050-090 (June 9, 1977), and Tex. Rev. Civ. Stat. Ann. 4590h (August 29, 1977). 10. In re Quinlan 70 NJ. 10, 355 A. 2d 647 11. Satz v. Perlmutter 362 So. 2d 160. 12. In re Eichner 52 N.Y. 2d 363, 420 N.E. 2d 64 13. In re Storar 52 N.Y. 2d 363, 420 N.E. 2d 64 14. Superintendent of Belchertown State Hospital v. Saikewicz 373 Mass. 728, 370 N.E. 2d 417. 15. In re Dinnerstein 6 Mass. App. 466, 380 N.E. 2d 134 16. In re Spring 380 Mass. 629, 405 N.E. 2d 115 17. For an introduction to some of these issues, see Emanuel, EJ. and Emanuel, L.L. "Proxy Decision Making for Incompetent Patients" JAMA vol. 267 (1992) pp. 2067-71. 18. P.L. 98-457 (Oct. 9, 1984). A good introduction to the continuing controversy is Kopelman, L.M. et al. "Neonatologists Judge the 'Baby Doe' Regulations" New England Journal of Medicine vol. 318 (1988) pp. 677-83. 19. As a good example of that controversy, consider the discussion prompted by publication of Quill, T.E. "Death and Dignity: A Case of Individualized Decision Making" New England Journal of Medicine vol. 324 (1991) pp. 691-4. 20. Schneiderman, L.J. et. al. "Medical Futility: Its Meaning and Ethical Implications" Annals of Internal Medicine vol. 112 (1990) 949-54. 21. Truog, R.D. et al. "The Problem with Futility" New England Journal of Medicine vol. 326 (1992) 1560-4. 22. Angell, M. "The Case of Helen Wanglie" New England Journal of Medicine vol. 325 (1991) pp. 511-2. 23. Brody, B.A. "Special Ethical Issues in the Management of PVS Patients" Law Medicine and Health Care vol. 20 (1992) pp. 104-15. 24. Blackhall, LJ. "Must we Always Use CPR" New England Journal of Medicine vol. 317 (1987) pp. 1281-4. 25. Youngner, SJ. "Who Defines Futility" JAMA vol. 260 (1988) 620-1. 26. A classical statement, which still recognizes some physician roles in cost-containment, is Angell, M. "Cost Containment and the Physician" JAMA vol. 254 (1985) 1203-7. 27. Menzel, P. Strong Medicine (New York: Oxford University Press, 1990) and Morreim, E.H. Balancing Act: The New Medical Ethics of Medicine's New Economics (Dordrecht: Kluwer, 1991). 28. In re Westchester County Medical Center (O'Connor) 72 N.Y. 2d 517, 531 N.E. 2d 607. Judge Wachtler has defended his position in Wachtler, S. "A Judge's Perspective: The New York Rulings" Law Medicine and Health Care vol. 19 (1991) pp. 60-2. 29. Belkin, L. "New York Rule Compounds Dilemma over Life Support" New York Times May 11, 1992, p. 1 30. McClung, J.A., and Kamer, R.S. "Legislating Ethics: Implications of New York's Do- Not-Resuscitate Law" New England Journal of Medicine vol. 323 (1990) pp. 270-2.
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Society's Choices: Social and Ethical Decision Making in Biomedicine 31. ibid. 32. Reprinted in Annual Report of New York State Task Force on Life and the Law for 1988 pp. 10-11. 33. N.Y. Public Health Law Article 29-B. 34. N.Y. Public Health Law Article 29-C. 35. Article 29-B, Section 2961. 36. Article 29-B, Section 2965. 37. This special provision is discussed in New York State Department of Health, The Health Care Proxy Law: A Guidebook for Health Care Professionals (Albany: Department of Health, 1991) pp. 16-7. 38. For an alternative reading, see Brody, B. "A Historical Introduction to Jewish Casuistry on Suicide and Euthanasia" in Brody, B. Suicide and Euthanasia (Dordrecht: Kluwer, 1989) pp. 39-75. 39. Life Sustaining Treatment, supra note 2. pp. 147-8. 40. Baker, R. and Strosberg, M.A. Legislating Medical Ethics (Dordrecht: Kluwer, 1994). 41. Amendments to New York Public Health Law 29-B (July 15, 1991). 42. Letter of Baker and Strosberg (April 23, 1991), reprinted in Baker and Strosberg, supra note 40. 43. O'Brien, D.D. "One Family's Experience with the New York DNR Law" and Quill, T.E. "When the Ambulance Goes Home", both to appear in Baker and Strosberg, supra note 40. 44. Rosenthal, E. "Rules on Reviving the Dying Bring Undue Suffering, Doctors Contend" New York Times (October 4, 1990) p. 1. 45. Swidler, R.N. "The Presumption of Consent in New York State's Do-Not-Resuscitate Law" New York State Journal of Medicine (Feb. 1989) pp. 69-72. 46. Found in the 1993 supplement, p. 16. 47. Ibid p. 23. 48. See Gutis, P.S. "Accord Near on Proxy Plan for Life-Support Decisions" New York Times (May 30, 1989) p. B3 and Miler, T. "New York State's Health Proxy Law" New York Law Journal (August 16, 1990) p. 1.
Representative terms from entire chapter: