Week 1. Respect for patient values: competent patient decisions
I. The Basic Problem
II. Who Judges the Best Interest of a Patient?
III. Allowing Patients to Die: The Case of Rita M.
IV. The Case of Dax
V. The Concept of Patient Autonomy
VI. Respect for Patient Autonomy: The Larger Picture
The purpose of this introductory essay is to provide you with a somewhat larger moral and socio-cultural framework for understanding the range of problems we will be discussing in this session. As the title suggests, there are two concepts that are central to the organization of this session: respect for patient autonomy and treatment refusal. They are linked to one another through this question: When is it the case that physicians should respect the refusal by a competent patient of medical treatment they have recommended?
I. The Basic Problem
Before you read any further, perhaps you ought to actually try to answer that question. Maybe you find the question is just too abstract as it is stated. You might conclude that it is impossible to answer it at that abstract a level, that you really need some very particular cases with particular circumstances to know how you might be inclined to answer. That would be a fair response. But you might also be inclined to offer another sort of answer, not at all unreasonable. You might say, "If a competent patient is refusing some form of recommended medical therapy, then that decision must always be respected. Doctors have no moral right to force therapy on patients. A doctor is free to carry on a conversation with a patient about their decision, perhaps seeking to make clearer why she made the recommendations that she did, perhaps seeking to elicit from the patient a clearer explanation for why they refuse this recommendation, perhaps seeking to test how firm the decision by the patient really is. But if a patient makes clear that they have really made their decision, then that should be the end of the discussion. A good doctor will respect that decision." A response like this would certainly be congruent with what many would regard as the defining feature of the beginning of contemporary medical ethics, somewhere in the vicinity of 1970. At that time we see the beginning of a movement to give moral primacy to the value of respecting patient autonomy, giving patients the right to make decisions about their own medical care since, after all, what we are talking about is their welfare and their bodies. No one else has as much to gain or lose as a result of the medical decisions that are made. Before pursuing this line of thought further, we need to return to our original question.
A third response to our original question might go like this: "A good doctor will be very reluctant to acquiesce to patient refusals of recommended treatment. After all, physicians make the treatment recommendations they do because they are making medical judgments about what is in the best interest of their patients. They genuinely care about their patients. They want patients to have improved health and functioning, a longer life, a better life. They have invested long hours in study to develop the expertise necessary to make sound medical recommendations to their patients. If they simply acquiesce to such refusals, they are either saying they doubt their own expertise, or that they really do not care sincerely about the well-being of their patients (since they are allowing their non-medically expert patients to make potentially harmful decisions for themselves). So a good and caring doctor will strongly resist such patient refusals as contrary to the values and ideals that define the medical profession." This sort of response also has a quite reasonable character to it. It really reflects what we can refer to as "traditional" (pre-1970) medical ethics. Some writers refer to this as the "beneficence model" of what medicine ought to be guided by. No one reading this should attach any pejorative connotations to my use of the term "traditional" to characterize this approach to medical ethics, as if I meant to suggest this way of thinking was old fashioned or outdated. On the contrary, we (now healthy individuals, but very likely seriously ill individuals sometime in the future) want our doctor’s medical judgments guided by what they judge to be in our best interest. In fact, we trust that our doctors will be faithful agents of our best interests, that they will not allow their judgment to be corrupted by the interests of anyone or anything other than us.
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II. Who Judges the Best Interest of a Patient?
So, we might ask, where precisely is the moral problem that we see as the focus of our discussion? We might put it this way: "What should we do when there is a conflict between my judgment of what is really in my best interest and my doctor’s judgment of what is really in my best interest?" Lo provides us with a case that is nicely illustrative of this problem at the beginning of Chapter Four. This is the case he labels "Refusal of Surgery for Critical Aortic Stenosis." The case involves a 76-year old woman with an aortic stenosis. She is refusing the surgery that would repair that defect, a defect that could end her life suddenly and prematurely. This is not an irrational refusal of the surgery. She knows there is a risk of blood clots forming from the surgery, that these could result in her suffering a stroke that would leave her with cognitive deficits for the rest of her life, deficits that might reduce substantially the quality of her life. If she would die suddenly as a result of failing to have this defect repaired, that would be acceptable to her. She is willing to trade off a potentially [not certainly] shorter life for a life that is more likely to be of higher quality than what would otherwise be. Her physician is strongly urging her to have the surgery because he sees it as being in her best interest. He would certainly want the surgery for himself, were he in her position. But, we need to ask, "Does what he would want for himself in these circumstances have any moral relevance at all to the decision that this lady wants to make for herself?"
You might take a few minutes to reflect before reading on what you might do in these circumstances. The "you" can be characterized in different ways. This lady might be your mother or grandmother. If she were, what would you expect as a morally appropriate response from the physicians caring for her? The "you" could also be the primary care physician advising this lady; and you can imagine she has been a patient of yours for thirty years. The "you" might also be a future version of yourself. That is, you are the patient in this case. What would you expect as a morally appropriate response then? Finally, how should you integrate all these different perspectives, given that in the final analysis only one decision can be made?
Think too about what some of the considerations are that tug your moral judgment in one direction or another. Lo uses this case to introduce a discussion of medical paternalism. The term "paternalism" is often used as a pejorative term by those who want to give moral primacy to the value of respect for patient autonomy in medical ethics today. We see good parents as always trying to act in ways that will promote the best interests of their children. That sort of parental beneficence is something we value. But we might be inclined to see that as an inappropriate value when doctors treat their patients as if they were imprudent and ignorant children, incapable of making good decisions about how their lives ought to go. Certainly parents of adult children who continue to try to direct the lives of their children too strongly for their best interests are typically seen as being meddlesome or worse; they are generally not praised for their beneficent attitudes. So, concerns about paternalism represent one moral consideration that tug at us in this case.
Tugging in another direction are concerns about the premature loss of a life. Minor harms might accrue to patients or adult children as a result of bad judgment. Such harms seem tolerable. But a premature death looks like an ultimate and irreversible harm. It seems like caring doctors would not just stand by and let harms like that befall patients, especially if they have the ability to intervene to prevent a loss such as that. This does not sound like an unreasonable thought to have. Historically, however, there are tugs from yet another direction of which we need to be mindful, namely, imposing on patients prolonged unnecessary suffering out of proportion to what patients themselves would judge as reasonable benefits.
We have to recall that in the ‘60s and ‘70s there was the rapid development of many sorts of life-saving/ life-sustaining therapies that were generally welcomed as therapeutic advances in medicine. But the major moral problem that emerged was that many patients who were clearly in the end stages of heart disease or various cancers or COPD had their lives prolonged against their will, which is to say that they had to endure considerable terminal suffering that they saw as pointless. For them (many, not all [another complicating factor]) an earlier death would have been a welcome relief, not something to be dreaded or forestalled. Physicians, however, for a variety of reasons (some having to do with moral beliefs, some having to do with religious beliefs, some having to do with personal psychology) resisted the idea of "allowing patients to die" when they had at their fingertips the medical power to sustain those lives (even if only for extra days or weeks). Added to that is the inherent uncertainty of medicine, and the occasional medical miracle (more frequent in the TV depiction of medicine). This is the stuff of genuine, wrenching moral conflict (and personal and professional conflict as well). These are the sorts of cases that make real and significant the "debate" between those who are advocates for the "respect for patient autonomy" model of medical ethics as opposed to the "beneficence" model of medical ethics.
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III. Allowing Patients to Die: The Case of Rita M.
The discussion we are pursuing here is not just a sterile or academic philosophic debate. Again, to make certain that this is real in your mind, I want you to consider the case of Rita M.
I want you to think about the Rita M. case in relation to Lo’s case of the lady with the aortic stenosis. It is easy to imagine someone saying that the Rita M case is morally challenging, but it really has nothing at all to do with Lo’s case. After all, Rita M has clearly started on a terminal course. The lady is Lo’s case may be older, but she is not on a terminal course. In fact, the whole point of the surgery would be to prevent that terminal course from starting (and maybe concluding very quickly). Does the fact that you (as this woman’s physician) are trying to prevent a terminal event give you moral authority for at least urging the surgery upon her much more vigorously, perhaps also minimizing the risks that might be associated with the surgery? One of the real virtues of the Lo book is that he consistently provides you with some very practical moral guidelines and behavioral suggestions for addressing cases like this. Review the guidelines Lo suggests for these sorts of cases. If you were to follow them, do you imagine that you would get a more satisfactory resolution of this case? What do you imagine that resolution might look like?
We have used earlier in this essay the phrase "good doctor," just sort of assuming that everyone would know and agree about what that meant. However, it would not take much practical experience or reflection to discover quickly that there are a number of competing conceptions of what a "good doctor" is, especially in addressing the kinds of cases we have introduced in this essay. We can sharpen up our question in this way: How should good doctors talk with patients about the sorts of issues that are raised in either the Rita M case or the aortic stenosis case? The article by Emanuel and Emanuel is part of your required reading because it is intended to give you a handle on that question. They suggest there are at least four models of what a "good doctor" ought to do by way of addressing cases like these. There is something morally attractive about each model. The Emanuels do a good job of conveying that in their essay. They in fact argue for the superiority of one of these models. Do you agree with their choice? Would you make that choice yours? Why or why not? What do you imagine the results would be of applying each of these models to our two cases?
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IV. The Case of Dax
One of the things we require you to do for this module is watch a one-hour videotape of the case of Dax Cowart. This is an old case----1973; but it has clearly had enormous staying power in medical ethics. That fact in itself is worth some degree of moral reflection. As you will see, Dax was burned very badly in a fire in a gas field in Texas. At the time he arrived in the emergency room it was uncertain that he would survive [70% third degree burns over his body]. But he did survive that initial period. After nine months of very intensive and painful burn therapy (which you get some very painful glimpses of in the videotape), it was clear that Dax would survive and have a normal life expectancy. But he still had another five months of therapy of this sort to have to endure. At this point in time he began to express his wish to be allowed to die. He wanted to refuse all further Hubbard tankings so that infections would set in and he would die from those infections. I do not want to bias your viewing of that tape, so I will not say any more about what motivated him to make that request at that time. You can form your own judgment on that matter as you view the tape, listen to Dax, listen to his doctors, do the related readings. [As an aside you might wonder why we take an hour of your time for watching this tape when we could just as easily give you a long case description you could read in five minutes, as we do with all the other cases we discuss in this course. But we insist on your spending this hour watching the tape because this is the sort of very complex experience that will be attached to your future patients who are seriously chronically ill or having to deal with a potentially terminal illness. What you see in that tape cannot be adequately captured in writing.]
You will see that Dax was interviewed by a psychiatrist nine months after his accident. This was Dr. White, whom you will see in the tape. Dr. White videotaped his original interviews with Dax. We have a copy of those tapes in our office. The most significant feature of those interviews is that Dax is as clear and lucid in those tapes as he is ten years later in the tape you will view. The point of noting this will become clear shortly. The critical question raised by the Dax case (going back to the beginning of this essay) is: Should Dax’s doctors have respected his refusal of life-sustaining care? Should his doctors have allowed him to die, as he requested? Or, alternatively, were his physicians morally obligated to act in his best interests, whether or not he could appreciate then what his future best interests would be?
You can begin to orient your thinking about this case by going back to our other two cases. How is the Dax case like or unlike (morally speaking) those two cases? You will see Dax explaining why he wanted to be allowed to die then by saying that he did not want to live "as a blind and crippled person, sitting on some street corner selling pencils from a tin cup." Dax did understand correctly at nine months that he would always be a blind and crippled person. To his mind this was an unacceptable quality of life. That was not a life worth living. Death was really preferable to that. And, he would add, death was preferable now rather than having to endure another five months of suffering through the Hubbard tankings. This looks something like the line of reasoning associated with our aortic stenosis case. That lady was refusing the surgery because of the risk of clotting and strokes and cognitive deficiencies that might be one of the outcomes of the surgery. I deliberately put the words "risk" and "might" in italics to emphasize that these were very far from certain outcomes. Realistically, that risk might have been in the vicinity of 10% or so. So, ask yourself what your judgment was with regard to that case, especially the amount of moral weight you attached to that quality of future life consideration in determining whether a good doctor ought to respect her refusal of the surgery. Then note the fact that in Dax’s case his being blind and crippled for the rest of his life was not a matter of probability; this was a certainty. In this connection be sure to read carefully what Lo has to say in Chapter Four by way of assessing the moral significance of these "future quality of life" considerations, especially with regard to the fact that many individuals with very serious disabilities lead what they themselves judge to be very satisfactory lives. Ask yourself: "Is that a consideration that can be quickly dismissed by saying, ‘That’s them; this is Dax.’?"
In further exploring our initial moral judgments with regard to the Dax case we find another factor to which many would attach a lot of moral weight. At nine months Dax is clearly going to survive, as long as the physicians continue to provide him with the same effective medical care. He is not terminally ill in the way that Rita M is terminally ill. He has no medical problem that will certainly result in his death sometime in the foreseeable future. Further, he is a young person with a long life expectancy in front of him; he is not a 76-year old person with aortic stenosis. Further, what Dax wants to do to end his life is reject effective medical therapy. This is not therapy where there is considerable uncertainty as to whether or not it will accomplish its objectives. This is not therapy that imposes considerable burdens on a patient for the sake of merely marginal benefits (as Rita M might judge in her case). For the physicians who were caring for Dax (as you will hear them say) it sure feels like they are being asked to assist Dax to bring about his own death, and it just does not seem that this fits what the goals and ideals of the profession are all about.
We need to follow up a bit on this last point. Again, I would refer you to Chapter Four in Lo, this time the later parts of that chapter. Lo introduces several other short case scenarios there. In order to appreciate the point of the those scenarios, I would ask you to concede that in general doctors ought to respect the autonomous choices of patients. [We discuss below what this concept of an autonomous choice means.] But the point Lo makes is that there are limits to the extent to which doctors ought to respect autonomous patient choices. Those limits might be broadly identified by means of two principles. Principle One would be this: "Patients have no moral right to treat physicians as if they were mere tools in their hands to be used for whatever purpose a particular patient might have in mind." The general idea behind this principle is that physicians have their own moral integrity, just as ordinary moral agents. In addition, they have their moral integrity as physicians, responsible for maintaining a commitment to the core moral values that define the profession of medicine. Consequently, patients have no moral right to ask physicians to perform medical actions that those physicians find to be deeply morally objectionable, even if only just to themselves as individuals. Hence, physicians are not morally obligated to provide abortions or agree to physician-assisted suicide just because a particular patient has made such a choice for themselves autonomously.
Principle Two is closely related to the first: "Patients have no moral right to demand that physicians practice what the profession as a whole would judge to be bad medicine." There are degrees here of what will count as "bad medicine." Lo’s cases will help you to become more reflective on that point. An obvious example of what I have in mind would be an 18-year old high school athlete seeking steroids from his family physician so that he can "bulk up" and improve his chances of securing a college football scholarship. No matter how much this athlete insists he understands the risks associated with steroid use, no matter how much he insists his long term best interests involve playing college level football, he has no moral right to insist under the rubric of respect for patient autonomy that this physician must provide him with the steroids, even though this is clearly contrary to good medical practice.
The question you want to ask yourself now is whether either of these principles have appropriate relevance to the Dax case and what Dax is expecting of his physicians by way of cooperation. That is, is what Dax is requesting (or Rita M) outside the bounds of what respect for patient autonomy would require of a physician?
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V. The Concept of Patient Autonomy
We now should turn our attention to more careful reflection on this concept of "autonomy." Again, it is easy to imagine any of Dax’s physicians saying, in effect, "I generally am in favor of respecting autonomous choices patients have made with regard to their own medical care. However, it first must be clear that a patient has made an autonomous choice that commands moral respect. If a patient wants to make a choice whose autonomous character is at least questionable, then a physician is not morally obligated to respect a choice like that. On the contrary, a good doctor should definitely resist acquiescing to such a choice, opting instead to have medical decisions made in accord with her best judgment of what is in the medical best interests of that patient." To help you think through this aspect of the case more carefully, we ask that you read the essay by Bruce Miller. Miller will distinguish four "senses" of autonomy. Does each of those senses seem reasonable and meaningful to you? How do you see them applying to the Dax case, or the other cases we have introduced in this essay? Does thinking about the case from this perspective help you to get clearer about what the right thing to do is here, all things considered? Like Lo, Miller starts his essay with several short case scenarios that help to illustrate what is intended by each of those senses of autonomy. They also provide us with cases where our moral judgments can be made pretty easily and confidently. We can then use cases such as that to make comparisons with more difficult cases, such as Dax, where our moral intuitions are pulled in many different directions. So you might want to ask how the Dax case is like or unlike each of those four cases. [Note: The Miller article is almost twenty years old. This sometimes bothers medical students. You might be inclined to think there must be something more recent, more up to date, as you would find in medical journals. However, as in some parts of medicine, some therapies have been around for decades and have not been improved on. Some articles discussing some moral issues are like that as well. We believe this is one such article.]
There is a closely related concept that often enters the discussion of cases that involve patients refusing life-sustaining treatment. This is the concept of competence (and incompetence). This word is often associated with the law, so we will put it aside for our purposes. In medical circumstances laws often prove to be crude instruments for making what are really decisions that require great sensitivity. An alternate phrase that Lo introduces in Chapter Ten (and is the preferred phrase for most medical ethicists) is "decisional capacity." This phrase is closely related to the concept of autonomy we discussed above, but they are not perfectly synonymous. In brief, a patient has decisional capacity if they can understand well enough the medical information that has a bearing on their medical circumstances, if they can use that information to assess rationally the medical options available to them, if they understand the risks and benefits of the options available to them, and if they have a stable enough set of values that grounds or informs their decision. The very important qualifying notion attached to decisional capacity is "task-specific." What this means, in brief, is that varying degrees of decisional capacity will be appropriate, depending upon what is at stake in the case of a specific medical decision. Patients may have the capacity to make a very broad range of either medical or financial decisions in their lives, but it might be the case that their capacity to make a very serious, literally life or death medical decision, is substantially compromised by some specific failure in decisional capacity (which would imply that their choice was not autonomous, and therefore , was not a choice that health professionals were morally obligated to respect). Now, go back and reflect again on the Dax case, asking yourself this time whether you would judge that Dax lacked decisional capacity when it came to refusing those Hubbard tankings. There is, of course, a critical follow-up question: Who has the moral authority to decide whether or not a patient has demonstrated sufficient decisional capacity with respect to a particular decision? Is the attending physician the ultimate authority in that regard? If so, how do avoid the risk of rampant paternalism, that is, gross and unjustified failure to respect patient autonomy? As you view the Dax videotape, you will see several of his physicians interviewed. Are you inclined to think that any of them could be fairly criticized for behaving paternalistically when such paternalism was not warranted?
We spend a significant amount of time discussing the Dax case, and cases like it that involve the refusal of life-sustaining treatment. This is because these are issues that are deeply morally troubling, not just intellectually, but emotionally. This latter sort of troublesomeness is very effectively addressed in the Edwards and Tolle article we have included in the recommended readings. The basic story in that article is that Edwards and Tolle are members of an ethics committee asked to make a recommendation for the withdrawal of a respirator from a 67-year old patient who appears to be quite capable of making that decision for himself. They agree that his request should be granted and arrangements are made for the family to be present to say their farewells just prior to the removal of the respirator. The intensivists who were supposed to take responsibility for this task were called away by another case just before the respirator was to be removed. As a result responsibility for following through on this decision fell to Edwards and Tolle. What they describe in the article so well is the emotional distress they experienced as they accomplished that task, in spite of the fact that intellectually they were morally confident this was a morally permissible choice. This was a distress they clearly would not have experienced if the intensivists had carried out the disconnection and merely reported the results at the next meeting of the committee. What, if any, moral significance should be attached to those feelings of distress? Should this be taken as an indication of moral error, that allowing the patient to die in this way was really contrary to the core values and ideals of the practice of medicine? Would there have been any less distress if, alternatively, the request for ventilator removal were denied and these physicians had to witness the last days of this patient struggling with extreme shortness of breath?
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VI. Respect for Patient Autonomy: The Larger Picture
A good supplemental case for discussion, which will allow you to get a new slant on the following four issues, is the Case of Mr. B.
(A) Refusing to be told a diagnosis of Alzheimer’s Disease. In the concluding part of this essay I want to call your attention to some other autonomy-related issues which we may be able to discuss only briefly in the session itself. These are also morally important, though they may not be as dramatic as the Dax case or the case described by Edwards and Tolle. First, we have been talking about patients who want to refuse some specific medical intervention. Do patients have an equally strong moral right to refuse information related to future medical decisions that will have to be made? For example, patients may not want to be told that the most probable diagnosis for their "forgetfulness" is Alzheimer’s dementia. That will make it much more difficult to elicit from such patients informed and autonomous choices about future medical care if the basic premise of the conversation is rejected by them. If you were the physician caring for a patient like this, how do you imagine you would begin to get a handle on this problem?
(B) Interpreting autonomy in culturally diverse circumstances. Second, there may be cultural diversity considerations that complicate discussions of autonomy. For example, what if in some culture husbands traditionally make decisions for their wives about medical matters? Should any effort at all be made to elicit a decision from the woman herself in order to give her an opportunity to make her own autonomous choice? What if she has breast cancer, and the tumor is large enough that the intervention which would maximize her long term survival odds is a mastectomy? But the husband refuses permission for such an intervention (because he does not want his wife disfigured by the surgery/ refusing even to discuss the option of breast reconstruction), and his wife remains entirely silent in the face of his announced decision. Is that a decision that a good doctor is morally obligated to respect? How would you begin to think through the relevant moral considerations in a case like that? If you expressed some concern about the husband’s decision and his reaction was to say: "This whole notion of respect for patient autonomy is just one of your cultural values. You have no right to impose that value on us," how would you respond? That is, what would you take to be a morally reasonable response?
(C) The disability community and treatment refusal. Third, there are issues connected with the concerns of disability rights activists. Lo briefly calls your attention to these issues as well. The typical sort of case that generates controversy involves an individual severely disabled as a result of a serious accident. Imagine a high spinal cord injury resulting in an individual being a vent-dependent quadriplegic. Imagine too that they have had a couple years to adjust to these disabilities, but they simply fail to find enough in the way of satisfaction in life. Their lives are too limited, too confined, too deficient in the pleasures that they could enjoy before their accident. So they ask that they be disconnected from the ventilator and allowed to die. For the sake of argument, I ask you to assume that the patients we have in mind have satisfied well enough the four senses of autonomy that Miller discusses (in the real world with an individual case this issue would be a major focal point for inquiry). Does respect for patient autonomy then morally obligate physicians to respect the requests of such patients for ventilator removal (and death)? Or would doctors be morally justified in overriding such requests, in part on the grounds that these patients are not terminally ill? Or, more relevant to our present concerns, disability advocates argue that acceding to such requests threatens the lives and dignity and worth of all disabled individuals, that acceding to such requests confirms popular prejudices that living as a person with disabilities is a very unsatisfactory life and that a compassionate society should quickly comply with requests for removing life-sustaining care. Consequently, these advocates contend that a caring society will not allow such individuals to choose death for themselves. Is this a concern that you as future physicians should give considerable moral weight to? Or would you want to argue that such third party interests have no moral relevance to the choices any one individual with disabilities would care to make? In thinking this through you might bring to bear the article by Engelhardt in your reading packet. He is a very strong advocate of respect for individual liberty. He believes that doctors should do their best to make sure that patients have all the information they need to make a wise decision, and that they understand that information, but once a patient announces a firm decision that is the decision physicians must respect, no matter how foolhardy or tragic it may appear to others who are on the outside of that decision. Are you inclined to agree with this view? What would you see this view implying in the case of Dax?
(D) Autonomy and the best interests of others. Here is another sort of treatment refusal case (common enough) that forces us to think more carefully about the limits of respect for patient autonomy and third party interests. Imagine a man who is 84 years old, severe end-stage heart disease complicated by arthritis and a number of other health problems. There is very little that he is able to do for himself. He is cared for in his home by his wife, who is 83 and who has significant health problems of her own. He requires constant care, so much so that his wife’s health and well being are seriously threatened. They can only afford a small amount of formal home health care. The recommendation is that he ought to be placed in a nursing home, but he is adamant that he wants to live and die in his own home, that his wife is perfectly capable of caring for him, and he does not want to have his life disturbed by a bunch of strangers in a nursing home. His mental faculties are intact; he knows exactly what he wants. Does respect for patient autonomy require that this choice be respected, that neither his doctor nor anyone else has a right to override this choice and place him in a nursing home against his will? His wife is silent as to her own wishes.
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Essay by Leonard Fleck