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Medscape J Med. 2008; 10(10): 237.
Published online Oct 14, 2008.
PMCID: PMC2605131

Incompetent Patients, Substitute Decision Making, and Quality of Life: Some Ethical Considerations

Eike-Henner W. Kluge, PhD, Professor

Abstract

One of the most difficult situations facing physicians involves decision making by substitute decision makers for patients who have never been competent. This paper begins with a brief examination of the ethics of substitute decision making for previously competent patients. It then applies the results to substitute decision making for patients who have never been competent, and critically analyzes 5 models of substitute decision making for such patients, showing why each either contravenes basic ethical principles or fails to guarantee the use of ethically appropriate values. It concludes by sketching a modified objective reasonable person standard for substitute decision making that avoids valuational difficulties and allows for a protocol that satisfies ethical principles.

Introduction

One of the cornerstones of contemporary healthcare is that all other things being equal – eg, there being no health-related risks to third parties – every competent patient has the right to accept or reject any intervention. As the World Medical Association puts it in the International Code of Medical Ethics, “A physician shall respect a competent patient's right to accept or refuse treatment.”[1] Sometimes the decisions that patients make are fundamentally at odds with what the physicians believe is appropriate, and this may cause the physicians considerable unease. However, while unquestionably difficult, these are not the really troublesome cases. The really troublesome cases are those where duly empowered substitute decision makers make decisions for incompetent patients where, in the attending physician's judgment, these decisions are either based on the personal values of the substitute decision makers or are out of step with the sorts of decisions that average competent patients would make. The physician's unease tends to reach crisis proportions when substitute decision makers decide that treatment should be withdrawn or withheld even though the patient could be kept alive (albeit with severe deficits), or when substitute decision makers opt for aggressive treatment even though it is highly unlikely to be successful and, at best, the patient will only live a severely deprived life that could scarcely be called human by contemporary community standards.

In this note, I explore the ethics of substitute decision making for patients who have never been competent and outline what physicians should look for when considering whether duly empowered substitute decision makers are using unreasonable criteria, are merely following their own values, or are in fact acting appropriately. In the process, I take a critical look at the notion of substituted judgment as it has been defined by the courts, as well as at several other approaches. I conclude by sketching what may be called a modified objective reasonable person standard with a comparative quality-of-life criterion for patients who have never been competent, where the clinical picture involves severe physical and/or mental deficits.

Informed Consent and Capacity

For the sake of conceptual clarity, it may be useful to begin with a brief look at the ethics of informed consent, since substitute decision making is society's attempt to apply that notion to incompetent persons.

The right to informed consent is not a political or legal artifact. It is grounded in one of the more fundamental ethical principles of contemporary society; namely, the principle of autonomy and respect for persons. This principle is a general principle, and is to the effect that every person has a right to self-determination limited only by the equal and competing rights of others.[24] Since a patient's healthcare decision making is a species of self-determination, this is the foundation of the medical doctrine of informed consent.[59]

However, the exercise of this right is not as straightforward as at first glance it may seem. It assumes that the patient has decision-making capacity. Three requirements must be met in order for this to be true: The patient must have the ability to understand the nature and implications of the options that are being presented, must have stable and competent values, and must be able to make free choices without being coerced.

Without the ability to understand and reason, the patient will be unable to grasp the nature of the options that are being presented or their significance. Without such understanding, however, the action taken is not really a decision. Instead, it is the result of the patient blindly picking among options that have no more meaning than “shrudlu” or “gweeb.” Cognitive competence, therefore, is a necessary condition for giving informed consent.

However, it is not sufficient. Merely to understand and reason is not to make a decision. Understanding and reasoning clarify the intellectual landscape and present options; by contrast, making a decision involves choosing among the options that are understood. This, in turn, is possible only if there is something that motivates the individual to select or choose. In other words, an additional and noncognitive parameter is necessary to turn what is understood from a merely conceptual item into a possible choice. This additional element is contributed by values. Values attach weight to the options. They function, so to speak, as action potentials. Absent these motivating features – which is to say, absent values – choices cannot and will not be made. That is why values are a second necessary requisite for patient decision making. Moreover, the values must be mutually consistent. If they are not mutually consistent, they will conflict with each other as action potentials – something that leads either to erratic behavior or to aporia (the inability to settle on a choice).[10]

A third essential component of genuine decision making is autonomy or volitional capacity. Without autonomy, choice reduces to a process of conditioned selection. Thus, computers can select among alternative courses of action. However, they select what they have been programmed to select; they do not choose. In other words, selection without freedom is determinism. That is why in law, coercion and conditioning (which are species of programming) absolve individuals of responsibility for their actions. Persons who lack volitional freedom will still be the causal agents of their actions, but they will not be responsible for them because they did not choose to do what they did. Without volitional capacity, therefore – which is to say, without the ability to select freely among the various options on the basis of authentically held values[11] – a patient may very well decide upon a particular course of action but that selection will not be a choice. That is why some patients who are cognitively competent and have stable values may appear to be able to give informed consent but in fact cannot do so. For some reason – and these reasons may range from overt or hidden coercion to dependence and unequal power relationships[12] – they lack volitional capacity.

Of course these are merely the personal conditions that patients must satisfy to be able to give consent. It says nothing about the process of giving informed consent. In particular, it says nothing about the disclosure of information by physicians to their patients. After all, decisions that are made without adequate information are also blind. Therefore, patients must also be told the nature and implications of the various therapeutic options that are available and among which they are to choose [1, 58] However, since the focus of the present discussion is the patient's decision-making capacity, we can safely leave that to another occasion.

Incompetence as Reason for Substitute Decision Making

Incompetent persons, then, lack (or are seriously deficient in) 1 or more of these capacities. That is why they cannot exercise their right to informed consent.

However, it is another fundamental principle of ethics that all persons, insofar as they are persons, are equal and should not be discriminated against.[2] This is known as the principle of equality and justice.[5,7] It lies at the very heart of a just and fair society. Therefore, if someone cannot exercise her right to self-determination because she lacks the capacity to do so, then a just and fair society must provide some mechanism to compensate for this lack, lest she lose a right that belongs to all other persons.

Or – and potentially this is even worse – if there was no mechanism to compensate for such a lack of capacity and the incompetent person did make a decision, then that decision would be treated as though it was competently made. While at first glance it might seem as though this respected the incompetent person's right, and while acceding to her wishes would indeed be to treat her in the same way that all other persons are treated, that very sameness of treatment would actually amount to discrimination. Incompetent persons are not the same as competent persons precisely because they lack something that competent persons have: They lack competence.

To treat people who are not the same as though they were the same is just as discriminatory as treating people differently even though they in fact are the same. In each such case, what is done is ethically inappropriate. Good ethics, therefore, require not that people be treated the same, irrespective of their differences, but that they be treated equitably – which means that their ethically relevant differences should be taken into account.[13]

This consideration is crucial to the present context. It means that allowances must be made for lack of capacity, and that to honor the decisions of incompetent person as though they were competently made would effectively be to punish them for their incapacity. To appreciate the practical implications of ignoring this point, one need merely consider what would happen if one respected the decisions of precocious but very young children or of people who suffer from dementia.

Substitute Decision Making and Previously Competent Persons

The general mechanism that society has developed to compensate for a lack of decision-making capacity is substitute decision making. Because incompetent patients lack decision-making capacity, their right to choose must be exercised for them by substitute decision makers.

However – and herewith we get to the nub of the issue – 2 questions immediately arise: Who should act as substitute decision maker? What values should the substitute decision maker use?

Substitute Decision Making as a Duty

In trying to answer these questions, it is very easy to lose sight of the fact that substitute decision making is not a right but a duty. To go back to what was said a moment ago, substitute decision making is the mechanism that society has developed to avoid discrimination on the basis of decision-making disability. Society assigns the substitute decision-making role to specific individuals as a way of discharging its duty to preserve equality and justice for its decisionally incapacitated citizens. This means that whoever acts as a duly empowered substitute decision maker must act in accordance with society's delegation of authority. Since that delegation is ultimately grounded in the principle of equality and justice, this means that substitute decision makers must act within the parameters of the principle of equality and justice itself. Therefore, the very principle that underlies the need for a substitute decision-making mechanism in the first place also provides the framework within which to seek an answer to the question as to who should act as substitute decision maker and what values the substitute decision maker should use.

The Values of Previously Competent Patients

It is easy to see that in the case of a previously competent patient, if a substitute decision maker were to use values other than those the patient held while competent, then the substitute decision maker would be forcing the now-incompetent person's life in a direction that the patient would have rejected had she not become decisionally compromised. Such an action, therefore, would violate the underlying ethics and logic of substitute decision making. Specifically, it would violate the principle of equality and justice because it would treat the incompetent person differently from all other persons in that her (otherwise competent) values would not be respected simply because of her disability. Therefore, only someone who will make healthcare decisions that are in keeping with the (previous competently held) values of the now-incompetent should function as a substitute decision maker.

Ideally, the now-incompetent person will have previously appointed a substitute decision maker through an advance directive – in which case substitute decision making really presents no problem. By making that advance directive, the individual will have clearly identified who, in her estimation, would respect her values and make substitute decisions on that basis. The principle of autonomy and the principle of equality, therefore, jointly entail that such an advance directive should be honored even if the appointed substitute decision maker is not next-of-kin. Being next-of-kin is an accident of birth and confers no guarantee that the next-of-kin share the values of the incompetent. Next-of-kin may not even have each other's best interests at heart – as homicide statistics illustrate only too well.[14,15] It is merely that it is highly likely, in most cases, that next-of-kin will have each other's best interests at heart and will share their values. However, for reasons that have just been indicated, this is a rebuttable presumption.

When the now-incompetent person has not previously identified a substitute decision maker or has not previously specified particular values, matters are a little more difficult. The preceding reservations notwithstanding, the standard presumption in these cases is that those who stand in a close personal relationship to the incompetent person are most likely to be aware of the values that the incompetent person held and are most likely to have the incompetent person's best interests at heart. In our society, closeness of relationship has traditionally been measured in terms of familial propinquity. That is why our society has identified the presumptive order of substitute decision makers in descending order of priority as follows: spouse, child, parent, sibling, and anyone else related by birth or adoption. However, this order may always be overruled by the courts if there are grounds to suppose that the traditional presumption is incorrect and that the otherwise duly empowered substitute decision maker would not make the decision in the best interests of the incompetent person or would depart from the values that the incompetent person would have used.

The question, of course, is how to identify such a situation. Unless the physician is quite familiar with the patient – something that is becoming increasingly unlikely in large medical clinics with huge patient loads where the patients are seen by different physicians, as schedules permit – the physician is thrown back on medical judgment. In other words, when substitute decision making seems to depart radically from what is standardly done and what is medically appropriate, it is time for the physician to ask whether this reflects the previous values of the patient or merely the values of the substitute. The duty to raise this question follows from the fiduciary nature of the physician-patient relationship, which entails that the physician should do the best for the patient. This is not to say that either standard or medical values should prevail. It is merely to say that the physician owes it to the incompetent patient to make sure that substitute decision making is being carried out appropriately.

That being said, it is important to reiterate that substitute decision making for previously competent patients usually presents few problems because it is generally easy to identify the values that the now-incompetent person would have used. Previous explicitly stated wishes, life-style, etc., tend to provide relatively good indications in this regard.[16] There are always exceptions, of course, as is illustrated by such high-profile court cases as Quinlan,[17] Cruzan[18] and Schiavo.[19] Still, by and large the consultation mechanisms that surround substitute decision making in these cases work rather well.

Substitute Decision Making for Persons Who Have Never Been Competent

However, when the patient has never been competent, no such indicators exist and standard consultation mechanisms can offer no help. Society, therefore, is faced with the problem of deciding what values substitute decision makers should use given the fact that there is nothing previous to go on. If there were no criteria in this regard and no way of checking, society would effectively be giving carte blanche to the substitute decision makers of these patients.

One can identify 5 more-or-less standard and distinct models that have been developed to deal with the issue and that enjoy some currency. They are, respectively, (1) using the value of medical appropriateness,[20] (2) mandating that substitute decision makers use the values of the family setting,[21,22] (3) doing what is in the patient's best interests as determined by the principle of beneficence,[16] (4) using the values that the incompetent patient would have used if the incompetent person had held values,[23] and (5) using the value of doing everything possible for the patient.[24]

Medical Appropriateness

Unfortunately, none of these models is entirely without problems. The important thing to keep in mind here is that the overriding consideration for substitute decision making is to compensate for the incapacity of the incompetent patient in keeping with the principle of equality and justice.

Model (1) – using the criterion of medical appropriateness – fundamentally departs from this condition on 2 counts. First, considered in and of itself, medical appropriateness is merely a (more-or-less accurate) calculation or estimate of which course of action is likely to achieve the clinically most successful outcome. However, as we have already seen, facts and outcomes are only part of what goes into decision making by normal patients (ie, of patients who do not lack capacity). Of course there is no question but that medical facts and likely outcomes play a crucial role in how people normally make their decisions. In fact, medical facts are the very raison d'être for such decision making. However, for reasons that should be clear from the previous discussion of decision-making capacity, medical facts without personal values are meaningless from a decision-making perspective. It is the individual's personal values that lend decisional significance to these facts. That is why, for the patient, the mere probabilities that are provided by medical accounts of what is and what is not likely to succeed do not automatically lead to a decision. Health care decision making is not the application of an algorithm. What might seem reasonable on the grounds of probability may look fundamentally different when viewed through the lens of personal, religious or other values; and the likelihood of medical success may well be trumped by considerations that depend on how the individual views the importance of the ability to function in a human capacity and to realize her nonphysical human potentials. This is neither measurable nor expressible in purely clinical terms. In other words, contrary to what approach (1) might suggest, medical appropriateness may well be a starting point but is not in itself decisive.

The second reason is a bit more subtle but is equally important. Appearances notwithstanding, the notion of what is considered medically appropriate is not value-neutral. It contains hidden value assumptions. And what is important about this is not that they are values, but that they are not the values of this patient or of the average person. They are the values of the medical profession.[25,26]

In other words, to insist that the acceptability of substitute decision making for patients who have never been competent should be gauged by what is considered medically appropriate is to stipulate that in these cases it is the values of the medical profession that should be determining. However, we know that there is no necessary congruence between the values of the medical profession and the values of nonmedical persons.[25,27] We also know that when competent persons make healthcare decisions, values other than medical values enter the picture. Indeed, as has already been pointed out, it is these values that ultimately underlie the decision making of competent patients. Therefore, to use the medical-appropriateness model in the case of patients who have never been competent would be to treat these patients, and these patients alone, differently from all other patients solely because of their disability. That would be in violation of the principle of equality and justice.

Familial Values

As to model (2) – the use of family-based values – this approach is consistent with the assumption that, by and large, family members tend to share similar values and that these, therefore, are the values that the incompetent would likely have used. As we have seen, this assumption also in part underlies the standard order of substitute decision makers.

However, some assumptions may not be warranted – or at least may not be as certain as we tend to assume. Thus, there are data to show that the presumption that family members tend to share the same values and that they tend to hit the mark when making substitute decisions for each other is not entirely correct. As one study found when evaluating the likelihood that family members would be correct in predicting what end-of-life decisions their next-of-kin would make, the likelihood that family members would choose what the other members would choose is no better than chance.[27] The conclusion of the study is worth quoting in detail: “Although the concordance of family members' predictions achieved statistical significance, the kappas (0.27 and 0.30) did not achieve even the moderate strength of agreement (kappa >0.4) that should be required of surrogates making life-and-death decisions on behalf of patients under the substituted judgment standard." As other studies have shown, this holds true not only for end-of-life decisions.[28] Therefore, it may be somewhat precipitous to rely on the assumption that family members would share (or would use) the same values.

The other thing to keep in mind is that even if the incompetent person would come to share the values of her social or their family embedding, this does not mean that those values should be decisive. To put it bluntly, some social and some family values are ethically indefensible and the fact that they are shared, that they have been accepted by the members of the family, and even that they have a long social tradition does not change this.[11] A good example is provided by the value of female circumcision. Some social and family traditions enshrine it as a value, and members of that grouping (especially women) will insist on it even though it affects them negatively.[2931] However, as the World Health Organization has stated clearly, it is ethically unacceptable because it constitutes mutilation.[32] Another example is the perspective that treats family members as having value and as full-fledged persons only as long as they can be useful contributors to the material well-being of the family unit. This value perspective then gives rise to the decision not to expend life-saving and/or sustaining healthcare on the elderly who can no longer “carry their own weight”[33] and in any case have already had “their kick at the can.”[34], One does not have to be a Kantian to see that this is not an ethically acceptable value even though the incompetent patient might come to share that value if she ever became competent. By treating her essentially as a mere production unit, this model violates the principle of respect for persons.

Again, this is not to say that family values should play no role in substitute decision making for patients who have never been competent. As has already been indicated (and as we shall see in greater detail in a moment), they are a useful guide and they do have a legitimate place. It is just that they should not automatically be considered determining, any more than should medical appropriateness.

Beneficence as the Standard

Alternative (3) – using the ethical principle of beneficence as a guide for determining what is in the patient's best interests[5,7,16] – appears to escape these problems. However, this may again be more illusory than real.

More specifically, equality and justice demand that whatever value is going to be used in substitute decision making, it should be used consistently and without discrimination. However, a value whose content changes from application to application – and more important still, a value whose nature changes depending on who uses it – is not a value that is used consistently. A value that is not used consistently is discriminatory.

And herein lies the problem with beneficence. Beneficence is not an objective and absolute concept. What it means depends on one's belief about what it is to be truly human and of what the ultimate aim of human actions should be. In short, it depends on philosophical value perspectives. That is why the understanding of what constitutes beneficence may range from the sheer physical well-being-oriented perspective of classical utilitarianism[35] to the more spiritually oriented viewpoint of a transcendental perspective; it may be defined in terms of what the reasonable person would advocate on “due reflection”[36] or in terms of what “involves a sense of community.”[37] It may even look to social consensus[38], or socially predominant values.[39] Philosophical,[40] cultural,[4144], and even gender-related factors[45] may also enter the equation, and so may religion. In other words, what constitutes beneficence – what constitutes acting in the best interests of the incompetent person – is inescapably relative because it requires a frame-of-reference-based interpretation. Consequently, the question of whether the principle of beneficence has been followed in a given substitute decision depends on the viewpoint of whoever adjudicates the acceptability of substitute decision making.

Moreover, even if a consistent and universally acceptable interpretation of beneficence could be found, it is not at all clear that adopting a beneficence-based best interest approach is logically any different from adopting a family-values or medical-appropriateness-based approach. All that it amounts to is replacing the values of the family or of the medical profession with the values of those who are the arbiters of what constitutes beneficence or best interests. There are sufficient historical examples to show that there is no guarantee that the values that will be used by such an arbiter will be ethically defensible on other grounds. One need merely think of the treatment of colonial peoples whose established cultures and languages were suppressed under the banner of beneficence “for the good of the people themselves.”[46] And here it does not matter that the former colonial powers have come to realize the error of their ways. The very fact that they have come to realize that their perception was in error proves the point.

Substituted Judgment

Alternative (4) – which is to say, using the values that the incompetent patient would have used if the incompetent person had held values – attempts to avoid all of these difficulties by focusing on the incompetent patient as individual, and by using the values that she would have used. This is the substituted-judgment approach that first came to prominence in the Saikewicz decision[23] and that has since found its way into several other legal cases.[47]

Requiring a substitute decision maker to put herself into the position of the incompetent person and making the decision the way the incompetent person would have made it seems to acknowledge the uniqueness of the incompetent patient as person. It therefore seems to satisfy the principle of respect for persons and the principle of equality and justice. Moreover, the very task itself – putting herself into the position of the incompetent person and making the decision in the way the incompetent person would have made it – seems to provide an objective procedural mechanism that can be followed consistently in all cases.[48]

But once again, we are dealing with an illusion. As various commentators have pointed out[49,50] (and as some jurisdictions have clearly recognized),[51] this approach is logically contradictory. It follows that it cannot provide a usable mechanism. If a substitute decision maker were actually to put herself into the position of the incompetent person, the substitute decision maker would be incompetent. That would mean that the substitute decision maker would also be decisionally incapacitated and therefore could not make a decision either. As to using the values that the incompetent person would have used, this is sheer conceptual sleight-of-hand. Since the incompetent person never had any values, appealing to what values she would have used amounts to sheer guesswork without the benefit of either an empirical or a conceptual basis.

Doing Everything That Is Possible

Model (5) – the doing-everything-possible approach – certainly avoids all of these difficulties. It divorces the decision process entirely from the troublesome question of what values the incompetent patient might have had or what values the medical profession or anyone else might hold or use. Instead, it simply looks at the clinical picture, determines what is possible, and uses that as the yardstick of what should or should not be done. If the substitute decision makers have decided to do everything possible, then clearly they have fulfilled their duty; if they have decided not to do so, then they have failed and the physician has a clear, objective, and incontrovertible criterion for deciding whether that is the case.

But there is a snake in this decision-theoretical paradise. In fact, there are several. First and foremost, there is the fact that the notion of “everything possible” is as hopelessly ambiguous as the notion of “best interests.” “Possible” in the sense of what is reported in the literature? That may be out of the question in this specific clinical setting here and now because technical expertise and training, equipment and supplies, personnel, etc., are simply not available. Does “possible” include only standard therapy or also experimental treatments? In all cases, or only when the patient is dying?[52] And so on.

Second, this approach entrenches reverse discrimination. That is to say, not everything that is possible is done for most other patients. The reasons why this is so are varied, ranging from lack of money or the fact that they don't want it done to the fact that (in the case of access to experimental treatments) most are not dying.[52] However, in the end it does not really matter. What is important is that it is not done. Therefore, if this model were accepted, it would only be patients who have never been competent who would receive all-out care on all levels. That would put them into a uniquely advantaged position because of their disability. And that, in turn, would violate the principle of equality and justice. Therefore, the underlying principle that mandates substitute decision making would be violated by this interpretation.

Third – this may seem trivial, but it really isn't – healthcare decisions are made in a social context. That includes both substitute decision making and healthcare decision making by competent patients. This, in turn, means that ethical healthcare decision making, no matter by whom or for whom, must take the overall nature and effects of those decisions into account. This includes not only the effects on the relevant patients but also on the rest of society, where “rest of society” extends not merely to society at large but also to the next-of-kin who have to pay the bills. To how many kidneys or hearts is an incompetent patient who rejects transplants entitled at the expense of other patients who are good matches and good recipients? Do next-of-kin have a duty to bankrupt themselves to keep an incompetent person alive or to treat an incompetent next-of-kin when they would not go to those lengths for themselves? These are uncomfortable but pertinent questions. The following observations by Pope Pius XII, while specifically addressed to Catholic physicians, capture the inherent limitations of ethical obligations in this regard very well.[53]

Natural reason and Christian morals say that man (and whoever is entrusted with the task of taking care of his fellow man) has the right and duty in the case of serious illness to take the necessary treatment for the preservation of life and health. But morally, one is held to use only ordinary means – according to the circumstances of persons, places, times, and cultures – that is to say, means that do not involve any grave burdens for oneself or another. A more strict obligation would be too burdensome for most men and would render the attainment of a higher, more important good too difficult.

The Modified Objective Reasonable Person Approach

What approach, then, should substitute decision makers use? It would be foolish to deny that the approaches that have been discussed have valid points to make. For instance, medical appropriateness is certainly an important factor in any healthcare decision making, and there is a real tendency for individuals to come to share the values of the sociocultural embedding in which they grow up. Likewise, while the concept of beneficence may lack an absolute definition, it does point in a direction that may provide general guidance. And while the substituted judgment criterion is logically incoherent, one can certainly salvage from it the admonition not to measure the quality of life of an incompetent person by normal standards but to take the incompetent's level of awareness and sophistication into account. As to the “do everything possible” approach, one can surely gather from it the injunction not to take the easy way out and not to minimize one's efforts.

At the same time, it would be equally foolish to ignore the fact that all of these approaches have serious flaws. What is wanted, therefore, is an approach to substitute decision making for patients who have never been competent that can pass a 2-part test: First, the values used by the substitute decision makers must be logically compatible with respect for persons and with equality, both of which principles are captured by the Universal Declaration of Human Rights. If the values do not meet this first test, they will be unethical values and the substitute decision makers should not use them no matter how well-entrenched they may be in the sociocultural background of the incompetent person. Second, the actual decisions that are made must not deprive the incompetent person of an opportunity that interferes with the patient's development as a person insofar as such development is possible and the opportunity is standardly available to other members of society. Anything else will violate the principle of equality and justice; and while society may allow such decisions to be made by competent persons on their own behalf as long as this does not affect others – “Your right to swing your fist stops where my face begins!” – it cannot ethically allow this on behalf of persons who have never autonomously decided it. Deviant values require autonomous acceptance precisely because they are different.

Substitute Judgments and Comparative Quality-of-Life Coefficients

The conditions that have just been outlined strip substitute decision making to its bare ethical and logical bones. Interestingly enough, however, they also allow for tremendous flexibility and can be operationalized in a protocol that does not require venturing into valuational quagmires or into the logical never-never land of substituted judgment. A decision process guided by these conditions avoids valuational bias because the values it uses are built into the principles that structure the decision framework itself – where these are the very principles that provide the overarching framework for all healthcare decision making irrespective of whether the subject is competent or incapacitated.

More specifically, one of the factors that competent patients consider when faced with critical healthcare decisions is the quality-of-life implications of the various options among which they have to choose. The modified objective reasonable person approach whose logic was just sketched requires that substitute decision makers adopt that very perspective when making decisions for incompetent patients.

That is to say, at the start of the decision making process the substitute decision maker has to bracket the incompetent's decisional incapacity out of the equation and focus solely on the clinical picture. The next step is to consider a normal (ie, non-incapacitated) patient with a similar clinical profile and develop a quality-of-life rating for the patient under these conditions. The decision maker then identifies the various treatment options that are available and/or appropriate for this sort of case and projects the quality-of-life that would likely eventuate for each of the treatment options. Here any subjective expression of satisfaction with life, psycho-social impact and other evaluative parameters are relevant and must be factored into the equations. This is not an impossible task and does not call for the development of new techniques. There exists a wide variety of tools to measure such quality-of-life changes, and these changes can be expressed in numerical terms, yielding what may be called a comparative quality-of-life coefficient for each treatment option.[54] This coefficient will usually be a range, rather than a precise and unique value. The substitute decision maker then considers whether, given available resources, the normal competent patient would opt for treatment under these conditions. Again, there are statistical data to this effect.[55]

Having become more or less clear on these factors, the substitute decision maker then returns to the decisionally incapacitated patient and applies the same clinical standards and develops corresponding comparative quality-of-life coefficient ranges for the incompetent person on each interventional option, where the subjective expression of satisfaction with life, psychosocial impact, and other evaluative parameters relative to the incompetent patient at the patient's level will also be factored into the equations. The substitute decision maker then opts for that treatment where, given available resources, the comparative quality-of-life coefficient for the incompetent person falls within the range that is acceptable to the competent patient with a similar medical profile, competence of course being excepted.

The preceding can be represented schematically as follows:

  1. Development of clinical patient profile for the incapacitated patient
  2. Identification of competent patients with a comparable clinical profile
  3. Identification of treatment options for the competent patient, given available resources
  4. Identification of comparative quality-of-life coefficients for the competent patient under the different treatment options
  5. Identification of ranges of quality-of-life coefficients that are considered acceptable for competent patients
  6. Application of the same treatment options to the incompetent patient
  7. Identification of comparative quality-of-life coefficients for the incompetent patient under the different treatment options
  8. Comparison of quality-of-life coefficients of the competent with those of the incompetent patient
  9. If the comparative quality-of-life coefficients for the incompetent patient fall within the ranges considered acceptable for competent patients, then the decision maker must opt for treatment.
  10. If the comparative quality-of-life coefficients fall below the ranges considered acceptable for competent patients, then treatment must be refused.

Clearly, this approach satisfies the principle of equality and justice as well as dignity and respect for persons. Equality and justice are satisfied procedurally, since corresponding validated tools are used to develop objectively expressed ranges, and these objective ranges are then the basis of comparison. The principle of dignity and respect for persons is satisfied because the measurements of subjective experiences are evaluated relative to the level of each individual. This approach, therefore, does not proceed on the assumption that one size fits all. Instead, the experiential uniqueness of each individual is acknowledged.

Conclusion

As Hans Jonas once said, “Utter helplessness demands utter protection.”[56] Incompetent persons are utterly helpless – but, ironically enough, so are substitute decision makers if what is demanded of them is the impossible. Incompetent patients must be protected against discrimination; substitute decision makers must be protected against demands they cannot fulfill.

However, there is another stakeholder in this scenario. It is the physician. The physician has a fiduciary duty toward the patient where, in contemporary society, that duty is defined within the limits of the doctrine of informed consent.[57,58] In the case of patients who have never been competent, fulfillment of that duty is extremely difficult. What has just been outlined is an attempt to bring the various disparate strands together and to operationalize them in a substitute decision-making protocol that satisfies fundamental ethical principles and is objectively applicable. As to whether ethical principles should be decisive, that is a matter of perspective. However, it would be sad if substitute decision making continued to be determined by the vicissitudes of litigation.

Footnotes

Reader Comments on: Incompetent Patients, Substitute Decision Making, and Quality of Life: Some Ethical Considerations See reader comments on this article and provide your own.

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