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Week 3: Respect for patient values: decisions for incompetent patients

Introductory Essay

NOTE: You may choose to read this essay; or you may instead read the chapters in the Lo textbook listed under Assigned Readings.

Index

Ethical Principles

Substituted Judgment and Best Interests

Who Decides?

Persistent Vegetative State

Dementia

Artificial Nutrition and Hydration

This topic covers decisions made on behalf of patients who are currently incapable of making their own health care choices. Some of these patients, including adults with a variety of acute and chronic incapacitating conditions, the elderly with dementia, and the permanently unconscious, were in most cases previously capable of making choices and so the opportunity exists for consulting the values that guided those choices. This in turn has led to tools such as advance directives and advance care planning. Other patients, including the mentally retarded and seriously ill newborns, were never capable of making their own choices, and so we have little if any direct way of attributing values to them to guide the choices we must make on their behalf. (Decisions involving children will be discussed in another unit of this course.)

Besides differences among the sorts of persons who may be incapacitated from decision-making, we could discuss whether it makes any difference which sort of treatment is being contemplated. We will discuss one particular category of treatment which has been ethically controversial– artificial nutrition and hydration.

Most bioethicists use the term "competence" to refer to the legal determination of whether a person can make his or her own decisions; and "capacity to choose" to refer to the clinical determination of whether or not a patient can make choices about health care. It is common in medical discourse to use "incompetence" as a shorthand phrase for "lacking the capacity to choose," and this phraseology is harmless so long as we do not confuse the clinical and legal arenas of decision-making.

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Ethical Principles

The two ethical principles which most inform this set of issues are respect for autonomy and beneficence. Respect for autonomy, as we have seen with regard to competent patients, requires that we permit persons to make their own choices freely as much as possible and as much as they wish to do so. Beneficence requires that whenever I am making a decision on behalf of another, I try to choose whatever would make that person better rather than worse off. We usually refer to this as deciding in accord with the other person’s best interests.

Some religious ethicists would urge that another principle be included here– respect for human life. Medical decisions should generally be made so as to attempt to prolong life, and any decision in the other direction should be made with a deep appreciation of the awesome responsibility involved. The principle has been stated here as respect for human life rather than as sanctity of human life, even though the latter formulation is preferred by some. Strictly understood, a principle of absolute sanctity of human life would require that no other value could outweigh the value of life in any circumstance. Very few religions or other belief systems actually entail a principle this strict. (For instance, it would require that one never kill in war or in self-defense and never accept capital punishment.)

Most secular bioethicists would reply that the two principles we began with suffice to deal with respect for human life. If we respect others’ autonomy and treat them beneficently, we will most of the time elect to prolong life. The few exceptions– where an autonomous person chooses to forgo life extension; or where it seems on careful consideration that prolonging life would not truly confer benefit upon the patient– point out precisely when other important ethical principles (such as relief of suffering) would override a principle of respect for life. The secular ethicist would also argue that we can handle religious commitment by adhering to the principle of autonomy. If a particular religious group feels very strongly about maintaining life at almost any cost, and a member of that group is under our care, we preserve respect for patient autonomy by adhering to that individual’s freely chosen values, including this religious commitment. (Members of that group might reply, however, that they feel profoundly disrespected by being treated in accordance with autonomy, as that amounts to imposing on them a secular belief system which they do not share– they may see the issue of prolonging life as following God’s law, and not as an exercise in individual autonomy.)

The strong emphasis modern bioethics has placed on the principle of respect for autonomy has colored the way this entire category of cases has been treated. For instance, the popularity of advance directives among the bioethics community may be explained by the way that an advance directive appears to change the case of a person whose autonomy cannot be respected (because she is currently unable to make choices) into a case in which autonomy can be respected (because we can follow the advance directive as a guide to the present medical decision, and so respect the values of the patient as she previously expressed them). To some critics, this has led to a temptation to misrepresent the actual nature of the decision process. For example, suppose that we know only vaguely what values the patient previously held with regard to the medical treatment choice now facing us. A good deal of interpretation may be required to extrapolate from those values to a specific decision in this setting. We might claim that our choice is justified by the principle of respect for patient autonomy. A critic might claim that what we have actually done is to try our best, based on what we know, to do whatever would be in the incompetent person’s best interests. If that is what we did, we should say so and not try to wrap ourselves in the mantle of autonomy inappropriately.

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Substituted Judgment and Best Interests

The law has taken this debate into account and courts have formulated two standards that might be applied to a medical decision on behalf of an incompetent patient– substituted judgment and best interests.

The substituted judgment standard is invoked when it seems reasonable to appeal to the moral principle of autonomy– that is, when we can reasonably claim that we are carrying out the known wishes and values of the previously-competent person. The legal ideal is that we are substituting our judgment for the judgment of the now-incompetent patient; but we have every reason to believe that the actual content of the decision matches what the patient herself would do were she able to choose at this time.

By contrast, the best interests standard makes no appeal to autonomy or to the known wishes or values of the patient; it simply claims that the decision will promote the interests of the individual as much as possible in the circumstances. A popular bioethical formula for this is that of the ratio of benefits and burdens. Each treatment plan– including no treatment– can be seen as providing certain benefits for the patient and also imposing certain burdens on the patient. To choose in someone’s best interests is therefore to choose whatever treatment provides the most favorable ratio of benefits to burdens. In cases where the end of life is near and life-prolonging treatment is likely to increase suffering considerably, withdrawing life-prolonging treatment and providing comfort care only may be the choice with the best benefit-burden ratio.

The court decisions on such cases may confuse non-lawyers because of the use of two different sorts of standards– one relating to the actual content or substance of the decision, and the other for the level of evidence brought forth that the right decision has been made. Substituted judgment and best interests standards refer to the content or substance of the decision. By contrast, the standard of "clear and convincing evidence" relates to how one knows either that the patient would have wanted this treatment, or that this treatment is in the patient’s best interests. Two state high courts, New York and Missouri, have imposed this latter standard on decisions to withhold or withdraw life-sustaining treatment from an incompetent patient. Most of the rest of the states use the lower standard of "preponderance of the evidence." ("Beyond a reasonable doubt" is a still higher standard but is used only in criminal law.) The Supreme Court of Michigan, in the 1995 Martin ruling, spoke in favor of a clear and convincing evidence standard, though legal commentators disagree on the exact scope of this ruling. (That is, it is unclear if the Court intended to discuss all decisions for incompetent patients; or only decisions for patients like Martin, who are severely brain damaged yet not in a vegetative state.)

It seems reasonable to regard clinical decisions on behalf of incompetent patients as falling along a spectrum between the substituted-judgment and best-interest poles. The extreme case which seems clearly to be a substituted judgment is when a patient has left detailed, written directions which cover precisely the clinical situation which now applies. The extreme case of best interests involves a person with no advance directive and no close family or friends, where all we can do is try to decide what the average person would or would not want under these circumstances. Most cases we encounter will fall somewhere in the middle. A case may fall at different places with regard to different dimensions of the decision. For instance, suppose a patient, Mr. Jones, has filled out a durable power of attorney for health care, naming his niece Sally as his appointed surrogate or proxy decision-maker, but he has left no written instructions for Sally and has never had conversations with Sally about what he would or would not want in the present clinical situation. When we do what Sally tells us to do, we are respecting a substituted judgment, since we have a high level of confidence that Mr. Jones truly wanted Sally and not someone else to choose for him. But when Sally chooses, she seems to have no way to proceed except by a best-interests determination.

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Who Decides?

The point of determining whether any patient possesses or lacks the capacity to choose is to determine whether we should assign the choice to the patient, or if a proxy needs to be appointed to make decisions on the patient’s behalf. While physicians have a lot to do with determining whether a patient lacks the capacity to choose; and while many proxies will defer to the physician’s judgment a good deal of the time, the physician, as such, is not supposed to become the proxy for an incompetent patient.

A proxy might be any of the following:

The agent or surrogate selected by the patient in a durable power of attorney document
A "natural" proxy– the family member (or group of members) who is closest to the patient and knows the patient best
A legal guardian appointed by a court following a formal competency hearing
A proxy selected by a hospital ethics committee. This might occur when a patient has not executed a durable power of attorney, and when no relative seems to be an appropriate proxy; but the patient has a friend or acquaintance who knows the patient well and is in a position to reflect the patient’s values and desires regarding health care. On review of the case, the ethics committee might decide that the friend is the best proxy to choose on the patient’s behalf and might ask that person to provide input. So long as there is no legal challenge, the decision might be made without the necessity of formal legal proceedings.

The physician’s duty to the proxy closely parallels the duty owed to a competent patient– to provide all pertinent information (including advice and recommendations if requested) and then to allow or assist the proxy to make the decision.

Physicians sometimes act as if their ethical duty is over once a proxy has been designated and is willing to make decisions. But just as a physician might have a moral duty in the case of a competent patient who appears to be making a mistaken decision, the physician owes the patient a duty of protection if the proxy seems to be failing to protect the patient’s known wishes or best interests. In an extreme case, a physician could approach the court (in Michigan, the Probate Court) to ask that a proxy be removed and a guardian appointed instead.

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Persistent Vegetative State

One class of incompetent patients which has received special attention in the bioethics literature (and in case law) is persistent vegetative state. These patients are characterized by a very high probability (but not absolute certainty) that they will never regain consciousness. They may, however, survive for 30 years or more in some cases with tube feeding. Neurologically they exhibit maintenance of brain stem functions (including spontaneous respiration) with the complete absence of higher cortical activity.

A practical reason for the attention paid to this group is the relative (though not complete) lack of controversy about the value of prolonging life for them, compared to many other patients. Some in our society believe that these patients should be kept alive as long as possible; but these views appear to be a distinct minority. In opinion polls, as much as 90 percent in the U.S. say that they would not wish to be kept alive in such a state.

Philosophically, this category is of interest because it may be questioned whether a "best interests" standard can be applied at all. A prevalent view of what counts as a person focuses upon a minimal level of conscious self-awareness as a necessary condition for being a person with interests. If I am completely unaware of myself as existing over time, and cannot know any difference if I live for 5 years or for 5 minutes, then it seems odd to propose that I have an interest in being kept alive (or, for that matter, in being allowed to die). Similarly, if nothing that you do or don’t do to me makes any difference whatever in what I perceive (since I perceive nothing at all), then it would seem that nothing you do could either promote or violate my interests.

Others would dispute this philosophical theory of what counts as a person as being too mentalistic, and argue that what makes us a human person may be different attributes, including our relationships with others.

If, however, one adopts this philosophical theory, then there would seem to be two sorts of good reasons as to what to do with an individual in persistent vegetative state. One would be respect for the autonomous choices of the previously competent and aware person, if she had left an advance directive specifying her wishes for this circumstance, or if her relevant values were known. Another would be a concern over the use of scarce medical resources– since, according to this argument, we cannot violate any interests of the patient by deciding to withdraw care in order to reduce costs.

U.S. case law has never recognized the idea of a "living human non-person," which this philosophical theory would entail. But court decisions have nudged close to this position, by stating, for instance, as did the New Jersey Supreme Court in Quinlan, that the state’s duty to preserve and protect life is markedly attenuated when a person can never regain consciousness.

Given the recent publicity and controversy generated by the case of Terri Schiavo, it is worth noting that the supporters of the Schindlers, Ms. Schiavo's parents, who bitterly opposed removing the feeding tube of a woman who had been in a persistent vegetative state for (in the end) 15 years, did not make a claim that life should be prolonged even if one is permanently unconscious. A major part of the case argued by the Schindlers' supporters (and eventually undermined by the autopsy findings on their daughter) was that Ms. Schiavo was not properly diagnosed as being in a vegetative state and actually showed signs of recovery.

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Dementia

Patients with dementia present a number of ethical issues, some of which overlap those brought up by persistent vegetative state.

A practical problem in dementia is the patient with fluctuating levels of orientation, who may appear competent to make her own choices at some times but not at others. Family members may be called upon to help decide which wishes are those most authentically belonging to the patient. This suggests, in turn, a treatment goal for patients with lowered but not absent autonomy– instead of being too quick to declare the patient incompetent, try to find ways to support the competent functions that remain as long as possible.

Many ethicists are starting to take a fresh look at ethical issues in nursing home and long term care settings. For example, some have addressed the apparent irony of putting a great deal of focus on advance directives and do-not-resuscitate orders, in an institution which will not allow a resident to decide whether to use the phone and when to eat breakfast. What truly counts as optimal preservation of autonomy in such a setting? What most contributes to the patient’s quality of life? (Consider ethical issues raised by the use of chemical and physical restraints for patients with dementia.)

Analogous to the philosophical question of absent personhood in persistent vegetative state is the question of changed personhood in advanced dementia. This concept also applies to seriously brain-damaged individuals such as Michael Martin in the Michigan Supreme Court case. Imagine Mr. Jones at two points in his life, calling these individuals Jones-1 and Jones-2. Imagine that Jones-1 prides himself on his independence and has a horror of ever losing his faculties; he leaves a directive that he should be allowed to die rather than exist as a demented nursing home resident. Without his health deteriorating in any other way, Jones gradually becomes more and more demented. Now he is Jones-2, who has no memory whatever of Jones-1's views on these matters. But Jones-2 seems to be enjoying life as much as possible for a person with his limited perceptions. He exhibits no pain, and seems gratified by simple human contact, watching TV, etc. Now Jones-2 develops pneumonia. Should he be treated with antibiotics?

One view is that respect for patient autonomy requires that we allow Jones-2 to die. He is the same individual as Jones-1, who left very explicit directives regarding just such a situation, and we should feel duty bound to respect that directive. But another view holds that for all purposes, Jones-2 is actually a different person. There is no thread of memory connecting Jones-1 and Jones-2, and we have no reason to believe that Jones-2 shares the values of Jones-1 on such matters as independence (indeed Jones-2 seems incapable of the mental sophistication to imagine Jones-1's views). Unlike the person in persistent vegetative state (according to the line of argument discussed above), Jones-2 is a person with interests. It makes a difference to him how he is treated, whether he is fed, whether he is in pain, etc. It would be wrong to allow a different person (Jones-1) to sentence this newly emerged person (Jones-2) to death, in the absence of any reason to think that Jones-2 would prefer death to his apparently pleasant enough life. The relative pros and cons of these two philosophical views can be debated at length.

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Artificial Nutrition and Hydration

All of the above discussion has been addressed generally to making treatment decisions on behalf of incompetent patients. Does it make a difference if the treatment is artificial nutrition and hydration?

The majority view of the bioethics community today seems to be no. IV lines, feeding tubes, etc. are simply forms of medical treatment; they should be provided if the patient wants them and they provide a benefit rather than a burden; they should be avoided if the patient refuses them or if the burden outweighs the benefit. The view that they belong in a special category is an emotional reaction based on the symbolism of "starving a patient to death" or "dying of thirst." Oxygen is just as basic to life as food and water, but we do not say one is "smothering a patient to death" when a ventilator is withdrawn in the ICU.

On this view, the emotional reaction is especially unfortunate given the actual facts about dying in a state of malnutrition or dehydration. The idea that being deprived of artificial nutrition and hydration is a painful or unpleasant way to die is commonly held by both the general public and health care workers; but the available data do not support it. If anything, the data suggest that one can cause patients more suffering by excessively intervening with these means at the end of life. Feeding tubes may promote nausea or aspiration; IV hydration may cause excessive throat and pulmonary secretions.

Even if one agrees with this "majority" view (and of course there are dissenters), there remain significant ethical questions. One is the relationship between this medical intervention and physician-assisted suicide. One way to die, if one is not being kept alive by medical treatment but nevertheless finds life no longer worth living because of worsening disease, is to stop eating and drinking. One may seek a physician’s help, both to promise that IV’s and feeding tubes would not be imposed against one’s will, and also to provide comfort care in the unlikely event that the death proves painful. Would this death be a refusal of life-prolonging medical treatment or physician-assisted suicide? The latter is illegal in all U.S. states except Oregon (as of this writing); the former is legal in all states. Is there a moral difference between the two acts? If a patient of yours is requesting assisted suicide, and you believe that the patient has made a rational choice, but you are deterred from carrying out an illegal act, should you mention the possibility of stopping eating and drinking as an alternative?

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