SOME REFLECTIONS ON
by Thomas A. Mappes
(This article originally appeared in NEWSLETTER ON PHILOSOPHY AND MEDICINE, in APA NEWSLETTERS, vol. 98, no. 1, Fall 1998, pp. 106-111. Copyright 1998 by the American Philosophical Association.)
There is no doubt in my mind that advance directives can be a valuable and important tool for many of us, but it has become increasingly clear that these instruments (especially living wills) are more problematic than originally anticipated.(1) In calling attention to some of the problems associated with the construction and implementation of advance directives, I do not really mean to suggest that advance directives are unworthy of enthusiasm, but I do want to insist that our enthusiasm needs to be somewhat tempered by an awareness of various limitations and problems.
There are two basic types of advance directives. In executing an instructional directive, a competent person specifies instructions about his or her care in the event that decision-making capacity is lost. An instructional directive, especially when it deals specifically with a person's wishes regarding life--sustaining treatment in various possible circumstances, is commonly called "a living will." In executing a proxy directive, a competent person specifies a substitute decision maker (i.e., a health-care agent) to make health-care decisions for him or her in the event that decision-making capacity is lost. The legal mechanism for executing a proxy directive is often called a "durable power of attorney for health care."
It is helpful at this point to remind ourselves of the sense behind a living will. Most of us can easily imagine medical circumstances in which the continuation of our lives would be of no value to us. I would certainly say, in the event that I should fall into a persistent vegetative state (PVS), that the continuation of my life would have no value for me. [All references to PVS in this paper assume that the vegetative state is reasonably believed to be irreversible (i.e., permanent).] Moreover, in some cases, I--and I think many others--would want to say something even stronger--not just that the continuation of my life has no value for me, but that it has negative value. If I were terminally ill and undermined by pain, constraint, and/or indignity, with no reasonable prospect of relief, I would be inclined to say that I am better off dead; that is, it is in my best interests for my life not to continue. Now, if I am competent (i.e., if I retain decision-making capacity) at this point, I can refuse life-sustaining treatment. But, as we all know, the rigors of incurable illness and the dying process frequently deprive previously competent agents of their decision-making capacity. A living will is a device that allows me to exercise some measure of control over the circumstances of my death. In a living will, I express my personal wishes with regard to life-sustaining treatment in various possible circumstances. At its core, then, the living will is an expression of patient autonomy; the principal value that is being expressed is the value of self-determination. I am presently incompetent and cannot make decisions about life-sustaining treatment, but the living will allows me to make such decisions prospectively. I make decisions--while I am still competent--about how I want to be treated if I become incompetent, and the living will is the instrument that confers authority on these decisions and renders them efficacious.
A Common Shortcoming in Standard-Form Living Wills: The Circumstances Typically Required for Activation of a Living Will are Too Restrictive
In speaking now of standard-form living wills, I have in mind principally the various forms that have emerged in conjunction with state statutes. In my judgment, most of these standard forms share a central shortcoming, to this effect, the circumstances typically required for activation of a living will are too restrictive. The problem I have in mind here was more extreme in the first generation of living wills but is still cause for concern in many states, including my own (Maryland).
The core of the problem is the way in which activation of a living will is so frequently tied to the presence of "terminal illness" or a "terminal condition"--categories that have usually been interpreted to exclude both a patient in a persistent vegetative state and one who is mired in a severely compromised state, for example, as a result of stroke or Alzheimer's disease. Although the definition of a "terminal condition" is itself a notoriously problematic issue, a terminal condition is often understood as a condition that is incurable and irreversible and, regardless of medical intervention, will lead to death in some suitably short period of time. Thus, a PVS patient is not necessarily terminally ill. Although irreversibly unconscious and hopelessly compromised, the patient might be sustained in this state for 10, 20, 30, 40 or more years. Similarly, a desparately compromised stroke victim might be in a relatively stable state and thus not qualify as terminally ill. And the Alzheimer's patient, despite the fact that he or she is significantly debilitated and on a progressively worsening trajectory, also fails to qualify as terminally ill.
Many states (including my own) have by now effectively acted to deal with the first aspect of the problem that I am worried about; they have simply revised their standard-form living wills to ensure that the existence of PVS is an independent basis upon which to activate a living will. Although I find this development with regard to PVS an entirely welcome one, I am convinced that the other aspect of the overall problem remains largely unsolved. Even if the PVS issue has been effectively resolved in second generation standard-form living wills, it still remains the case that the circumstances typically required for activation of a living will are too restrictive.
Many of us, I believe, are deeply concerned about the prospect of existence in a severely debilitated but non-terminal condition, and we would like our living will to somehow address this concern. Would I, for example, want to be sustained as an Alzheimer's patient if I no longer had any idea who my friends and family were? Would I want antibiotics for my pneumonia in such a state? Would I even want nutrition and hydration in such a state? But with the emergence of such questions things get much more complicated. In fact, we are now faced with a whole new layer of complexity.
Another Layer of Complexity: Designing an Instructional Directive Responsive to the Prospect of Existence in a Severely Debilitated but Non-Terminal Condition
I am ruminating for a moment in terms of my own value system, recognizing of course that diverse personal and cultural values will lead different individuals to very different points of view on the issues at stake in this new layer of complexity. For one thing, I am not a religious person, so my attitudes and beliefs do not take account of any doctrinal authority or tradition. Obviously, many others will want to ensure that anything they say at this point would be in accord with the religious tradition they have embraced.
Certain general phrases come to my mind. I would not want life-sustaining treatment for myself in the event that I no longer have, and there is no reasonable possibility that I will regain, a "meaningful quality of life." That phrase certainly captures part of what I want to say, but were I to put it (or something like it) in an instructional directive, what would I really accomplish? Unless I go on to specify in some detail what counts for me as a meaningful quality of life, my instructional directive will be hopelessly vague. Other ideas are floating around in my mind. I certainly do not want to be condemned to an existence that I (as a presently competent person) would consider--here are the words--"demeaning" or "degrading" or "undignified." Perhaps I should add something like the following to my instructional directive: I do not want life-sustaining treatment if there is no reasonable prospect that I will recover from an undignified state of existence. Once again, we encounter the problem of vagueness. Unless I go on to specify in some detail what counts for me as an undignified state of existence, I will have provided very little effective guidance in my instructional directive.
Here is one other concern that I would consider very central to any instructional directive that I might want to prepare. I do not wish for my continued existence in a severely compromised state to be a burden--either an emotional or a financial burden--on those with whom I have shared my life--that is, my family and friends. I'm not at all sure exactly how to phrase what I want to say on this score; I only know that I am very strongly invested in this consideration, and I think many other people are as well. Perhaps I want to say something like this: Even if my life in a severely compromised state seems on balance to provide more benefits than burdens for me, I would not want my life to be sustained if the collective burdens to me, my family and friends are significant enough to outweigh the collective benefits to me, my family, and friends. At any rate, I think I have the prerogative as a presently competent person to stipulate that I do not want decisions about the continuation of my life in a severely compromised state to be made without regard for the impact of these decisions on my family and friends.
In focusing attention on some phrases that I resonate with, here is where I wind up. I don't want my life in a severely compromised state to be sustained if I no longer have a "meaningful" quality of life or if I am mired in an "undignified" state or if my continued existence constitutes a "significant burden" for those who love me. Now, on the one hand, I am interested in incorporating such phrases into an instructional directive that is more comprehensive than standard-form living wills. But, on the other hand, I recognize that numerous problems of interpretation are likely to arise unless I more effectively specify the meaning of these various phrases. Although this task is not an insurmountable one, I believe it is a very difficult one, even for those of us who have already thought a good bit about the issues at stake. One natural alternative is simply to include such phrases in an instructional directive and concurrently execute a proxy directive with the intention of having one's health-care agent resolve any problems of interpretation. If this strategy is chosen, of course, it would certainly be important for a person to discuss these matters in some detail with one's health-care agent.
The Relative Value of Advance Directives
Should everyone have advance directives? It is very doubtful that an affirmative answer to this question could be sustained, but it does seem to me that there are very good reasons for many people to have at least some type of advance directive. Perhaps the best way to think about this is simply to say that, depending on individual circumstances, and depending on the type of advance directive we have in mind, there are more powerful reasons for some people to have advance directives than for other people to have them.
Let's focus attention first on the relative importance of a proxy directive. In many states, there is now established an explicit hierarchy for the identification of a surrogate decision maker for an incompetent person who has not executed a proxy directive. In Maryland, for example, the hierarchy looks like this:
--close friend or other relative
I am reflecting, once again, in terms of the circumstances of my own life. There is no doubt in my mind that were I to lose decision-making capacity, I would want my spouse to make health-care decisions for me. But in Maryland, she will be empowered to do so even if I never execute a proxy directive appointing her as my health-care agent. So, in a way, it seems like I don't have a very compelling incentive to execute a proxy directive. But now I reflect further: What would happen if, for whatever reason, my spouse could not function as my surrogate? According to the established Maryland hierarchy, my parents are next in line, but they are approaching 80 and I would not want this responsibility to fall on them. So I reach this point in my deliberations: It makes sense for me to have a proxy directive in which I appoint my spouse as my health-care agent and, taking account of the possibility that she might ultimately be unable to function as my health-care agent, I name one of my three sisters as my backup health-care agent. And yet, since my first choice for a health-care decision maker is in accord with the state hierarchy, it may not seem like I have a really powerful incentive to have a proxy directive in place.
Suppose on the other hand that I were a gay male in a long-term relationship with my male partner. I would certainly execute a proxy directive naming my male partner as my health-care agent, because the more traditional logic of the state hierarchy is not about to lead to the identification of my partner as my surrogate decision maker. And similarly, anyone whose first choice for a surrogate decision maker does not accord with the reigning hierarchy has a very powerful motive for establishing a proxy directive. Suppose a person looks at the relevant state hierarchy and says: "You mean it's my brother who would make health-care decisions for me? My brother's a space cadet! I wouldn't trust him to take out the garbage." The person who says that is a person who has a very powerful incentive to execute a proxy directive.
Now, there is another consideration in all of this and, for me, it turns out to be a consideration of decisive importance. In Maryland, the health-care agent--that is, the person formally named in a proxy directive--has broader powers with regard to end-of-life decision making than does a surrogate identified in terms of the state hierarchy. A surrogate is authorized to reject life-sustaining treatment only if the patient is in a terminal condition, is in a so-called end-stage condition, or is in a persistent vegetative state; a health-care agent is not restricted to these three circumstances. Thus, for me, taking account of the fact that I would very much like to guard against the possibility of a prolonged existence in a severely compromised state, it would be very imprudent not to execute a proxy directive.
A more remote possibility also enters my mind. What if I were tragically injured and hospitalized in a state such as New York, where at present a surrogate (as contrasted with a designated health-care agent or proxy) essentially has no legal right to refuse life-sustaining treatment for a patient who has lost decision-making capacity? As a resident of Maryland, I already have a very strong reason to establish a proxy directive. When I consider that I am also a potential visitor to a state such as New York, I realize that the overall case for my having a proxy directive is at least slightly stronger. Of course, if I were a resident of New York, I would conclude that my need for a proxy directive (especially in the absence of a very explicit living will) was truly compelling.
Let's shift our focus now to the relative importance of instructional directives. I think I want to say, other things being equal, that the older a person is, the more compelling is the reason to think seriously about executing a living will. Do we really want to suggest that it is important for (healthy) young adults to have a living will? In teaching biomedical ethics to undergraduate students, I find that I do not so much want to encourage young adults to execute a living will at this point in their life as to educate them so that they will have the understanding necessary to think seriously about the possibility of doing so in due time.
A related consideration seems more or less obvious to me. Other things being equal, the more endangered a person's health, the more compelling is the reason to think seriously about the possibility of executing a living will. Further, in this vein, once a person is identified as a "heart" patient, or a "kidney" patient, or an ALS patient, it becomes possible to forsee with greater concreteness what sort of decline and dying process might lie ahead. And then, with appropriate education and support from both health-care professionals and family, it becomes more realistic to think through exactly what one might want in terms of life-sustaining treatment. Thus it becomes more feasible to craft a customized instructional directive, and I think there is often very good sense in doing so.
Instructional directives might well be of special value for individuals whose treatment preferences are unusual or at odds with what family members might be expected to favor. Instructional directives might also be of special value for those who would like to insulate their loved ones from the perceived burdens of end-of-life decision making, those who do not consider any likely surrogate or possible health-care agent sufficiently trustworthy or otherwise adequate to the task, and those who are essentially devoid of close personal ties. Of course, living wills originally evolved as a form of protection against overtreatment, and for most of us, that concern--despite a competing concern that cost controls now operative in the health-care system create a significant risk of undertreatment--may still provide a fairly strong incentive for establishing a living will, regardless of our age, degree of health, or special circumstances.
Let's ask then why so few people do in fact have living wills. One reason is obvious. On any given day, if I have a choice between working on my living will and working in the garden (or some such thing), I will probably decide to work in the garden. Thinking about my death is a rather unpleasant task; designing a new garden plot is a much more engaging activity. Moreover, the cultural and religious attitudes of many people are in various ways at odds with the whole idea of planning for death.(2) Closely related is the fact that some people are simply repelled by the thought that their choices could actually be implicated in the moment and manner of their death. However, I also want to suggest that the issues and concerns that can arise in drafting a living will can be very intimidating. I do not say that I am typical in the following regard, but I also do not think I am alone in saying that I have never seen a standard-form living will that did not make me nervous in some way, and often nervous in four or five different ways at once. On the other hand, how many of us are prepared to strike out on our own and craft our own document?(3)Better perhaps to share our thoughts and concerns with our health-care agent and trust his or her judgment.
Joanne Lynn develops a related line of thought in an article entitled, "Why I Don't Have a Living Will." Lynn registers a host of complaints against standard-form living wills but, in the end, simply prefers a model of family decision making. She writes:
I believe I have a trustworthy family and a supportive circle of friends. I would prefer to endure the outcome if they "err" in predicting my preferences, or even if they choose to ignore my preferences other than the preference for family decision-making, rather than to remove from them the opportunity and the burden of making the choices. I do not want anyone else presuming to impose what are taken to be my desires as expressed elsewhere upon that family.(4)
Many people, I believe, do not have living wills essentially because they feel secure within the fabric of family life. If difficult end-of-life decisions must be made for a family member who has lost decision-making capacity, then so be it; the decision-making resources of the family will be adequate to the task. Thus, from this point of view, there is simply no compelling need for living wills.
Justified Versus Unjustified Refusals to Honor Advance Directives
When patients have in fact gone to the trouble of establishing advance directives-- and here I am thinking primarily of instructional directives--do physicians typically pay sufficient attention to them? There is perhaps good reason to believe the answer to this question is no, but rather than directly exploring worries that might arise on this score, I will briefly consider a closely related and more fundamental question: Is it ever justified for physicians to refuse to honor the advance directives of patients?(5)
Surely the value of patient autonomy is sufficient to ground a very strong moral presumption that advance directives should be followed, but a moral presumption is one thing and an unconditional moral requirement is something else. Advance directives must be accorded a very weighty moral authority, but I believe it is just wrongheaded to say that refusals to honor them can never be justified.
Suppose a person has explicitly written the following into an instructional directive: "Never put me on a ventilator." At face value, this instruction is as plain as anything could possibly be. It says, "never put me on a ventilator." But suppose further that this person, otherwise in good health, has been injured, is presently incompetent, and needs the temporary assistance of a ventilator in order to recover. The family of the patient insists that this instruction should be disregarded. The patient's daughter speaks for the family: "Look, Mom didn't really mean she wouldn't want a ventilator in this instance. She wrote that instruction after watching granddad's tortured existence on a ventilator in his last days. Mom only meant that she did not want her dying process to be prolonged on a ventilator." In this sort of case I think it would be morally perverse to "honor" a patient's advance directive. Surely we do not show respect for patient autonomy by slavishly following a written instruction when there is compelling reason to believe the written instruction does not convey what the patient really meant to say.
Here is a similar case that once arose at a hospital in my community. An ALS patient essentially decided that he would not want his life to be prolonged past the point at which he had lost all awareness, and he wanted to write an instructional directive to this effect. He explained what he wanted to say to a lawyer, who responded, very wrongly, "oh, you mean brain death." So the patient wound up with an instructional directive saying that he wanted life-prolonging treatment until he was brain dead, but this instruction was clearly not the one he meant to give. Now, I would say, in such a case, to the extent that there is clear evidence--based on the testimony of family and friends--that a written instruction does not in fact represent the actual wishes of a formerly competent patient, that a refusal to follow this instruction is morally permissible and perhaps even morally required.
I will briefly mention one other consideration relevant to the claim that the refusal to honor the provisions of an instructional directive might sometimes be justified. There is certainly an important difference in an instructional directive between a patient's refusing and requesting certain forms of treatment. If a patient's instructional directive requests an experimental and very expensive form of treatment, and there is no mechanism in terms of which the treatment can be funded, there is certainly no obligation to provide it. Similarly, if a patient's instructional directive requests a so-called "medically ineffective" or "futile" treatment, there may well be no obligation to provide it.
Two Remaining Problems
Two final problems are sufficiently important to warrant explicit mention. The first can be identified as the "past wishes versus present interests problem." The second can be identified as the "problem of incompetent revocation."
The past-wishes-versus-present-interests problem is associated with the following kind of case. Someone has unambiguously stipulated in an advance directive that life-sustaining treatment should not be provided if she becomes seriously mentally debilitated; this patient is now severely mentally debilitated but is "pleasantly senile" and does not appear to be suffering. The problem is that life-sustaining treatment, although clearly incompatible with her past wishes, appears to be in her present interests. And there is a body of opinion that insists that the patient's present interests should take priority over the patient's past wishes.(6) A related issue involves the concept of personal identity. If mental deterioration is so severe that there is good reason to doubt that the present patient is essentially the "same person" as the one who executed the instructional directive, then what is the moral authority of the one to determine what happens to the other?(7)
My own view on the past-wishes-versus-present-interests problem is that the patient's past wishes should ultimately take priority over the patient's present interests, but I think this is a very difficult problem and I have constructed a more developed case to help us feel its force.
Albert H is a 77-year-old man who lives in a nursing home. His wife is deceased but their only child, a son, visits his father at least three times a week. Albert H began to exhibit the first signs of senility in his late sixties and his condition rapidly deteriorated. At this point he is categorized as severely but "pleasantly" demented. Albert H needs constant supervision and assistance with basic tasks but seems undisturbed by his situation. He loves to watch TV and smoke cigars. He seldom recognizes his son but talks enthusiastically with him and anyone else who will listen. He tells the same stories over and over again; in fact, he often tells the same story to a person 4 or 5 times in a row, forgetting that he has just told the story. Almost all of his stories derive from memories of childhood; he seems to have virtually no memories of his adult life. Apart from his mental deterioration, Albert H has no notable health problems.
When Albert H was in his early sixties, he had executed a formal advance directive. Among other things, he had clearly specified that, were he to become seriously mentally impaired, he should not be given life-sustaining treatments, including antibiotics. The problem now is that Albert H has contracted pneumonia, and this disease will probably be fatal unless it is countered with an antibiotic. Although Albert H's son is aware of his father's advance directive, he nevertheless believes that an antiobiotic should be provided. He argues that his father presently has no conception of the "indignity" of his existence. Since his life, however compromised, clearly has value to him (i.e., to Albert H), his son contends, it is in his best interest that the antiobiotic be provided.
Should Albert H's advance directive be overridden in this case? Is Albert H presently the same person as the person who wrote the advance directive? If not, does that former person have the right to dictate what happens to Albert H?(8)
Our final problem--a closely related one--is the problem of incompetent revocation.(9) A previously competent patient has unambiguously rejected some form of life-sustaining treatment in his or her living will. But now the patient, presently incompetent, confused and perhaps scared, insists on the treatment. The conflict here is between the past wishes of the previously competent patient and the present wishes of the now incompetent patient. Which should have priority? To my knowledge, state living-will statutes ordinarily provide for a patient--whether competent or incompetent--to revoke a living will at any time. Thus the system essentially gives priority to the present wishes of the incompetent patient over the past wishes of the previously competent patient. But one might feel that this is not a satisfactory resolution of the issue, and some people have attempted to deal with this contingency by incorporating something like the following provision into their living wills: "And if I ever say, while incompetent, that I do want treatment, I hereby instruct you to disregard what I say."
I think we must say that difficult and unresolved problems attend the construction and implementation of advance directives, especially living wills. At the same time, these documents can be immensely valuable within the context of many people's lives. We should acknowledge the valuable role that advance directives can play; we should not lose sight of the associated problems.
1. For one avenue of approach to the many problems associated with advance directives, see the series of articles in Special Supplement, "Advance Care Planning: Priorities for Ethical and Empirical Research," Hastings Center Report, 24:6 (1994), pp. S1-S36.
2. See, for example, Sheila T. Murphy et al., "Ethnicity and Advance Care Directives," Journal of Law, Medicine & Ethics, 24 (1996), pp. 108-117.
3. Norman Cantor presents one example of a very sophisticated, fully individualized document in "My Annotated Living Will," Law, Medicine & Health Care, 18:1-2 (1990), pp. 114-122.
4. Joanne Lynn, "Why I Don't Have a Living Will," Law, Medicine, & Health Care, 19:1-2 (1991), p. 104.
5. For one approach to this issue, see Dan W. Brock, "Trumping Advance Directives," Special Supplement, Hastings Center Report, 21:5 (1991), pp. S5-S6.
6. See, for example, Rebecca S. Dresser and John A. Robertson, "Quality of Life and Non-Treatment Decisions for Incompetent Patients: A Critique of the Orthodox Approach," Law, Medicine, & Health Care, 17 (1989), pp. 234-244.
7. For an extensive discussion of this issue, see Allen E. Buchanan and Dan W. Brock, Deciding for Others: The Ethics of Surrogate Decision Making (New York: Cambridge University Press, 1989), Chapter 3, "Advance Directives, Personhood, and Personal Identity."
8. This case originally appeared in Thomas A. Mappes and David DeGrazia, eds., Biomedical Ethics, 4th ed. (New York: McGraw-Hill, 1996), pp. 637-638.
9. Nancy M. P. King discusses this problem in Making Sense of Advance Directives, rev. ed. (Wash., D.C.: Georgetown University Press, 1996), pp. 204-213.
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