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The family in medical decisionmaking.

Should the authority to make treatment decisions be extended to the competent patient's family? Neither arguments from fairness nor communitarian concerns justify such an infringement on patient autonomy.

Families have traditionally exercised, and continue to exercise, considerable control over medical treatment of minor children. In both law and morality, families (or more specifically, parents) are regarded not just as interested parties whose views should be solicited and taken into consideration, but rather as rightful surrogate decisionmakers to whose judgment the physician normally ought to defer. When the patient is an incompetent adult, physicians often consult with family members (that is, children or siblings of the patient, parents, spouse, etc.) about specific medical interventions and even about continuation of treatment, and many physicians are guided by the family's decision if it is not obviously unreasonable and if it does not contradict any previously expressed wishes of the patient. Family involvement is also sought when the patient is a competent adult, not, of course, because the family is given the authority to decide for the patient, but because it is thought that patients may need the emotional support of family members during times of crisis.

The role of the family in treatment decisions for young children has been extensively discussed in the bioethics literature; I will not rehearse the familiar arguments for this general parental authority nor the reasons for preferring families as proxies for noncompetent adults. I want instead to turn to the case of competent adult patients and critically examine the current system of medical decisionmaking and its legitimating ethos in the light of the fact that patients are often cared for in the context of the family. I want to ask whether, in view of certain features of the relationship between patients and their families, the principle of patient self-determination at the core of contemporary medical ethics is in need of some serious rethinking. Might it be that family members, by virtue of their closeness to the patient, should not only have some special authority to speak on behalf of patients who are incompetent, but should also share decisional authority with patients who are competent?

A recent proposal that speaks to the family's role in medical decisionmaking has been advanced by John Hardwig. In his provocative essay, "What about the Family?"[1] he contemplates far-reaching changes in medical practice based on a critique of our prevailing patient-centered ethos. My discussion of his proposal is chiefly designed to pave the way for what I call a communitarian account of the role of the family in acute care decisionmaking. This account--which, I hasten to add, I do not endorse--has not to my knowledge been taken seriously as a theoretical possibility in the bioethics literature. Since the label "communitarian" is liable to be misunderstood, I should note at the outset that I am not interested in communitarianism as a political theory. Rather, I want to focus on the family as communitarian political writers sometimes think of it, namely, as a model for their conception of the larger society, and on the basis of this understanding of the family, to mount a challenge to the dominant patient-centered ethos that parallels the communitarian critique of liberal political philosophy. This communitarian position resembles Hardwig's proposal in that it does not regard the competent patient as the ultimate decisionmaker, but takes it as morally significant for the attribution of decisional authority that his or her life is intimately intertwined with the lives of close others. However, as we will see, the communitarian account is philosophically more radical than Hardwig's challenge to the dominant patient-centered medical ethos.

My own position is that the locus of decisional authority should remain the individual patient, but I also argue that family members, by virtue of their closeness to and intimate knowledge of the patient are often uniquely well qualified to shore up the patient's vulnerable autonomy and assist him or her in the exercise of autonomous decisionmaking. Families, in other words, can be an important resource for patients in helping them to make better decisions about their care. Recognition of this fact leads to a broader understanding of the duty to respect patient autonomy than currently prevails in acute care medicine.

Family Decisionmaking and Competent Patients

According to Hardwig, even when the patient is a competent adult, it may be quite appropriate to empower the family to "make the treatment decision, with all competent family members whose lives will be affected participating" (p. 9). This is so because family members have legitimate interests of their own that are likely to be affected in dramatic and profound ways by whatever treatment plan is chosen by or for the patient. Their interests may be affected in these ways because "family," by definition, consists of "those who are close to the patient" and "there is no way to detach the lives of patients from the lives of those who are close to them" (p. 6). Since family members must often revise their own priorities and significantly alter their life plans to accommodate the needs of sick or dying relatives, and since the nature and extent of the adjustment depends on the treatment plan that is followed for the patient, it would be wrong categorically to deny family members a role in determining what the treatment will be, how it will be administered, where, and so forth. For one thing, there is a presumption that "the interests of patients and family members are morally to be weighed equally" (p. 7), and family decisionmaking may be necessary to ensure that treatment decisions are fair to all concerned. Even when this is not necessary, the autonomy of other family members would be seriously undermined if the authority to make decisions that cut so deeply into their own lives belonged to the patient alone.

The interests of family members might be self-regarding or other-regarding. Particular choices about treatment can seriously affect the lives of family members in many ways, interfering not only with their own personal projects and individual lifestyles, but with their commitments to other family members as well. In any case, they are "separate" in the sense that they diverge from and possibly conflict with patient interests: they are not to be understood as interests in the interests of patients. Of course, those who love the patient also have a direct interest in the protection and promotion of the patient's interests, assuming that the patient has interests that can be protected and promoted. Indeed, this is part of the very meaning of love. But for Hardwig, there can be closeness without love, and even when there is love, there will usually be other interests of family members as well. When all of these interests are taken into account, it may turn out that what is best for the family as a whole is not what is best for the individual patient.

These other interest may be, and frequently are, quite legitimate, and treatment decisions should not be judged morally better or worse solely from the patient's perspective. Indeed, departures from optimal patient care may be justified "to harmonize best the interests of all concerned or to require significantly smaller sacrifices by other family members" (p. 7). Moreover, and very importantly, Hardwig expresses misgivings about the effectiveness of exhorting the patient to consider the impact of his or her decision on the lives of the rest of the family. Patients who seem to be ignoring their family's stake in the outcome of their decisionmaking process may sometimes respond appropriately to appeals from the physician or other family members, but many patients will be too self-involved to give the interests of others proper consideration or will use their illness as a kind of trump card to dominate the rest of the family. Because of this, Hardwig maintains, we must consider a more radical measure to ensure adequate protection of legitimate family interests, namely, rejection of the prevalent medical ethos according to which the competent patient is always the decisive moral agent. Under this ethos, it is certainly permissible for family members to offer information, counsel, and suasion to patients who must make treatment decisions. But the authority to make the decisions still resides with the competent patient alone, and this Hardwig finds untenable.[2]

The "ethic of patient autonomy" (p. 5) allows the competent patient, and the patient alone, to set the terms and conditions of care. Patients may be frightened and distracted by illness and hence in no position to give careful thought to the interests of others, but if their decisionmaking capacity is judged sufficient for the decision at hand, their wishes prevail. This troubles Hardwig because it amounts to giving patients permission to neglect or slight their moral responsibilities to other family members. Seriously ill patients tend to be self-absorbed and to make exclusively self-regarding choices about care, and in those cases where "the lives of family members would be dramatically affected by treatment decisions" Hardwig suggests that family conferences be "required" (pp. 9-10). These conferences would not merely have an advisory or supportive function: they would be decisionmaking forums. Patients and other family members would seek to reach a consensus that harmonizes the autonomy and interests of all concerned parties. Failing this, families would be forced "to invoke the harsh perspective of justice, divisive and antagonistic though that perspective might be" (p. 10).

Hardwig's proposal for greater family involvement in medical decisionmaking, however, runs up against the problem of patient vulnerability: joint family decisionmaking provides too many opportunities for the exploitation of patient vulnerability. Serious constraints on patient autonomy, such as anxiety, depression, fear, and denial, are inherent in the state of being ill.[3] Illness is also frequently disorienting in that patients find themselves thrust into unfamiliar surroundings, unable to pursue customary routines or to enjoy any significant degree of privacy. For these reasons, the ability of patients to assess their medical needs accurately and protect their own interests effectively is limited and precarious. But if those who are ill and those who are healthy already confront each other on an unequal psychological footing, then family conferences, as Hardwig conceives of them, seem especially ill advised. Weakened and confused by their illness, patients are easy prey to manipulation or coercion by other family members and may capitulate to family wishes out of guilt or fear. (Given that Hardwig would allow even hateful or resentful family members to be included in family conferences, this is not an idle worry.) Family members will understandably not want to be seen by the physician as opposing the wishes of the patient, and so they might exert pressure on the patient to concur with their opinions about treatment. Of course, even as matters now stand, with decisionmaking not generally thought to belong to the family as a whole, what seems like a patient's autonomous choice often only implements the choice of the others for him or her. But joint family decisionmaking is likely only to exacerbate this problem and to make truly independent choice even more dubious.

Hardwig, it should be noted, does acknowledge that a seriously weakened patient may well need an "advocate" (p. 10), or surrogate participant from outside the family, to take part in the joint family decision. However, this hardly resolves all the difficulties his proposal presents. The presence of an outsider in what is supposed to be a deeply personal and private conference might only create (further) hostility and suspicion among family members. And if consensus in the conference cannot be achieved, the rest of the family could simply overrule the patient's proxy participant, just as it could overrule the patient himself.

From a theoretical point of view, we should, I think, agree with Hardwig about the inadequacy of any view that denies or overlooks the essential interplay between rights and responsibilities. But the practical moral problem as I see it is how to design procedures and structures of decisionmaking that achieve an acceptable balance between rights and responsibilities, between the important values of a patient-centered ethos and the legitimate claims of other family members. If alternative approaches to medical decisionmaking are judged in this light, as Hardwig wants them to be, and not solely in terms of overall happiness or preference satisfaction or the like, then family decisionmaking for competent patients confronts serious moral objections. For indications are that it will often result not in a mutual accommodation of the autonomy and interests of all affected parties, but rather in a serious erosion of patient autonomy and a subordination of patient interests to the competing interests of other family members.

The Communitarian Defense of Family Decisionmaking

I have focused on the problems that nonideal, less than fully harmonious families pose for Hardwig's proposal. Critics of the patient-as-primary-agent model might instead restrict their attention to those (admittedly infrequent) cases in which patients belong to close-knit and harmonious families, and with this as their conception of the family, offer a defense of family decisionmaking that challenges the patient-centered model in a more radical way than Hardwig does. In ideal families, suspicions, resentments, disagreements, and the like, if they exist, are muted and do not set the tone of family life. But more importantly, it may be claimed, the conception of the person that underlies the theory of patient autonomy is patently inappropriate here. The patient is not, as this theory presupposes, an atomic entity, a free and rational chooser of ends unencumbered by communal and other allegiances. On the contrary, his or her identity is constituted by family relationships, and he or she is united with other family members through common ends and mutual understanding. In these circumstances, the patient is too enmeshed in a network of relations to others to be properly singled out as the one to make treatment decisions.

I call this the communitarian argument for family decisionmaking to distinguish it from the argument from fairness and autonomy discussed in the previous section. When I refer below to what "communitarians" say about medical decisionmaking, I am not thinking of any particular authors who have advanced this position.[4] Rather, I am suggesting that elements of the communitarian view can be taken out of their political context and that a challenge to the prevailing patient-centered ethos can be constructed on the basis of a communitarian conception of the ideal family. Let us look at this challenge more closely.

In acute care settings, the relationship between patients and physicians is, if not exactly adversarial, at least one in which patients should not normally suppose that they and their physicians are participants in a common enterprise with common values and goals. The values involved in medical decisionmaking are by no means exclusively medical values, but also largely normative ones about which patients and physicians frequently disagree. In these circumstances, physicians may attempt to coerce compliance with their wishes, which they are in an advantageous position to do, or to control patient decisions by selective disclosure or nondisclosure of information. In recognition of normative diversity and in the face of various threats to patient autonomy in the caregiving relationship, we invoke the notion of patients' rights. Rights accord patients a protected space in which to make their own choices and pursue their ends free of inappropriate interference from others. Having rights, patients can confront caregivers with the demand that their (possibly conflicting) ends be respected.

Communitarian critics of the traditional ethos of patient autonomy need not deny that patients' rights and patient self-determination play an important role in the caregiving relationship. But, they note, the patient is not always to be thought of simply as the one who is sick or in need of medical attention. If the patient belongs to a close-knit and harmonious family, for example, it is the family as a whole whose values and goals may diverge from those of professional caregivers because such a family is a genuine community, not a mere collection of separate individuals with their own private and possibly conflicting interests. Members of a community have common ends, and these are conceived of and valued as common ends by the members. United by common ends and a common identity, the threats that work against the autonomy of some work against the autonomy of all. Moreover, in these cases the patient would not need to be protected from family pressures for inappropriate treatment. Rather, the family would act as advocate for the patient vis-a-vis the physician, and family decision-making would put patients on a much more equal footing with care-givers.

For communicatarians the ethics of acute care, focusing as it does on the individual who is the subject of treatment, rests on a conception of the self that is at odds with how persons define and understand themselves in a community. This is a conception for a world of strangers, where the content of each person's good is, to quote Michael Sandel, "largely opaque" to others, where persons have divergent and possibly conflicting plans and interests, and where their capacity for benevolence is extremely limited.[5] But in the community of a close and harmonious family these conditions do not obtain. Rather, the defining features of such a family are mutual sympathy, common ends, a shared identity, love, and spontaneous affection. Of course, it is sheer wishful thinking, and cavalier as well, to assume that all families are like this. Family life may instead be fraught with dissension and interests may diverge and conflict. In these situations questions of justice come to the fore and the importance of individual rights (and individual patient rights) is enhanced. But within the context of a more or less ideal family, the circumstances that make personal autonomy both an appropriate and a pressing concern prevail to a relatively small degree.

For communitarian philosophers, individual rights have no place in intimate harmonious communities. Charles Taylor, for example, suggests that "the whole effort to find a background for the arguments which start from rights is misguided,"[6] and according to Michael Sandel, in "a more or less ideal family situation. . . individual rights and fair decision procedures are seldom invoked, not because injustice is rampant but because their appeal is pre-empted by a spirit of generosity in which I am rarely inclined to claim my fair share."[7] Rights, as communitarians understand them, are conflict notions, and if they play any role in intimate communities, it is remedial only.[8]

Unlike Hardwig's argument for family decisionmaking, the communitarian view I have constructed does not claim that families should make treatment decisions because this solves the problem of fairness or because this protects the autonomy of all those individual family members who have a stake in the outcome of treatment decisions. Rather, the argument proceeds from a picture of the family as a community of love where, it is alleged, questions of fairness and individual autonomy normally do not arise and are of minor importance. In the ideal family, there isn't enough of a distinction to begin with between self and others for these concerns to loom large. And this absence of a sharp line separating self and others is not a cause for alarm or a basis for moral criticism of family decisionmaking, but intrinsic to the nature of community, the experience of which, plainly, is an important good for humans.

The close-knit, harmonious family is a paradigm of community. Here the well-being of one family member does not just have an impact on the well-being of others, for this can happen in families that are no more than associations of individuals (like the ones Hardwig describes). Rather, in families that are genuine communities individuals identify with one another, such that the well-being of one is part of the well-being of the other. This being so, the communitarian maintains, decisions that importantly affect the well-being of one family member are the province of the entire family. To be sure, in the medical cases there is only one family member, the patient, who literally bears the decision in his or her flesh and bones. But this fact alone, it is believed, does not confer upon the patient a unilateral decisionmaking right. The right to make the decision is still a right of the family in ideal circumstances--a group right rather than a right of individuals.

However, since the communitarian argument for family decisionmaking applies only to families that are communities and not to those that are just collections of individuals whose lives affect each other in major ways, its implications for the practice of medicine will not be as significant as those of Hardwig's proposal. Many families, to acknowledge the obvious again, are not ideal. In addition, physicians frequently have only passing acquaintance with the patient's family and no reliable basis for judging the quality of the patient's relationship with other family members. Even if communitarians reveal genuine inadequacies in the prevalent ethos of patient autonomy and patient rights, physicians will often not be in a position to tell whether, in the particular case at hand, the family is harmonious enough to be entrusted with the authority to make decisions for one of its own. On the other hand, physicians will often have enough information to know that the lives of family members will be seriously affected by treatment decisions, and it is on this fact, not on the existence of a harmonious family, that Hardwig premises the case for joint family decisionmaking.

Still, the communitarian critique of the dominant medical ethos of patient autonomy and individual patients' rights raises interesting and important philosophical issues. Practical implications aside, the theoretical challenge it poses deserves a response. In what follows, I will try to indicate why I think this challenge fails.

How the Communitarian Challenge Fails

Even in families that are true communities of love, the harmony that exists among their members may not be so thoroughgoing that invocation of individual decisionmaking rights loses its point. It is not necessary for community that there be complete identity of all ends and unanimity on all matters of value or the good. On the contrary, there is room for significant disagreement about how to rank different components of a common conception of the good, about the proper means and strategies for achieving it, and about whether certain risks are worth taking to achieve common goals. Even if the members of a family are in broad agreement about what is of most importance in life, for example, this does not ensure that they will assess the costs and benefits of particular medical treatments similarly. Indeed, given the diversity of human nature and experience, such disagreements are not just possible but to be expected. Absolute harmony in decisionmaking and throughgoing convergence of values are only found in quite extraordinary communities. And this being the case, individual rights can be seen to have an importance the communitarian fails to acknowledge. They are not just claims we fall back on in the unhappy situation where community is lacking or faltering. Additionally, they serve to secure recognition of the diverse values and ends that persist even in intact and well-functioning communities. This lack of homogeneity is glossed over by talk of family rights.

Individual rights have an important place in community because the existence of community does not eradicate serious disagreement about ends, about the relationship between particular choices and shared ends, and so forth. Individual rights are needed because a significant degree of diversity may exist even in a group united by a common conception of the good. But what if, hard to imagine though it might be, there were a community without such diversity? Would individual rights have much importance in a perfectly homogeneous community like this? Would there be any point in ascribing rights to individual patients, rather than to families, if patients and their family members were in complete agreement about all matters pertaining to the good for themselves? Here if nowhere else, the communitarian would surely argue, individual rights are useless and irrelevant.

This is the conclusion we come to if we adopt a particular conception of rights. We find a clear and succinct statement of this conception in an earlier paper by Hardwig entitled, "Should Women Think in Terms of Rights?" The thrust of this essay, unlike that of "What about the Family?" is communitarian:

Thinking in terms of rights rests on a picture, first sketched by Hobbes and then made more palatable by Locke, of the person as atomistic, primarily egoistic, and asocial--only accidentally and externally related to others. If we are lucky our independent interests may coincide or happily divide in a symbiotic relationship . . . but we should not expect this to be the normal state of affairs.[9]

The normal state of affairs in a genuine community is quite different, however. Here persons are not just "accidentally and externally related" to each other, but understand themselves as participants in a common enterprise and regard the well-being of others as part of their own. No wonder then that rights should seem alien or antithetical to community and, more specifically, ideal familial love.

But communitarians who think of rights only in these familiar legalistic terms underestimate the complexities and possibilities inherent in individual rights. To be sure, rights sometimes function to protect the individual in the pursuit of his or her independent self-interest. But this hardly exhausts their significance. Consider these remarks by Neera Badhwar:

An ideal family or friendship may wipe out all differences of ends, both final and intermediate, but it cannot wipe out "the separateness of life and experience." Au contraire, it would seem that it is precisely ideal familial love and friendship that will appreciate the "distinction of persons," recognizing the interest of each individual in pursuing a shared good, and her right to do so within the constraints of justice.[10]

On this view, rights are important even in the most closely knit and harmonious community. Even if the lives of persons are inextricably intertwined and their conceptions of the good agree in every respect, they remain numerically distinct persons with their own distinct perspectives on the world and an interest in expressing them. This interest in exercising one's agency in the pursuit of one's ends is not the same as an interest in seeing one's ends realized, for one's ends might be realizable quite independently of the operation of one's own agency. Nor is this interest contingent on one's ends being different from or in conflict with the ends of others.

By linking rights to this fundamental interest in one's own agency, we can explain what is wrong with the communitarian's antipathy to rights. Thinking in terms of rights, on the present account, does not rest either directly or by implication on a picture of the person as atomistic, egoistic, and asocial. It rests rather on a picture of the person as a separate being, with a distinctive personal point of view and an interest in being able securely to pursue his or her own conception of the good. This by itself entails neither that one's relationship ships to others are intrinsic to one's identity nor that one is only accidentally and externally related to others. In ascribing rights to individuals, we are responding to these basic and universal features of persons.

It may help here to distinguish between having a right and insisting upon or demanding it. The language of demands does seem ill suited to harmonious families. If family members need to insist against one another that they have a right to make their own decisions, then we are probably dealing with a divided and quite antagonistic family. But these observations do not suffice to banish individual rights from harmonious families because the underlying supposition--that rights must always be linked to demands--is false. Rights can be expressed in different ways, and what is divisive and antagonistic to community is not the concept of rights, but only a certain way of expressing them. In harmonious families, rights are typically expressed "as reminders--gentle or forceful, matter-of-fact or emotional--of legitimate expectations and entitlements,"[11] and as such they play a vital role in the moral lives of families.

The implications of these remarks for a communitarian defense of family medical decisionmaking are clear. Even in extremely close families, patients may have different priorities from their loved ones and assess life choices in disparate ways, and these differences may surface in disagreements about how and even whether patients should be treated. Patients need their own rights regarding choice of treatment not just because family members cannot always be trusted to have the patient's best interests at heart, but because, even in families where trust is not an issue and there is a remarkable measure of agreement on ends and deep mutual affection, other family members may not always concur with the wisdom of the patient's choices. Rights protect patient autonomy and patient interests in these circumstances.

Further, rights for patients would be appropriate and useful even in those quite unusual families where the minimal sort of disagreement just mentioned is absent. For decisions about treatment often have dramatic and far-reaching consequences for the shape, quality, and duration of a patient's life, and individuals have an interest in determining for themselves the course their lives take. The interest in directing how one's life will go in accordance with one's values and preferences exists whether these values and preferences are uniquely one's own or shared with other family members, and it calls for recognition even when there is no disagreement between patient and family over the correct treatment decision. This is why patients have rights as individuals even under the unlikely conditions of absolute intrafamilial harmony: they protect the interests that patients have in exercising their agency.

Important questions remain about how belonging to a harmonious intimate community creates a new identity for the parties involved and about the interplay, for those who belong to such communities, between their interests as single individuals and their interests as members of community. But I believe enough has been said to establish the following, and this is all that is required for my purposes: community does not undermine the normative significance of the individual self nor does it render individual rights otiose.

Family Involvement in the Process of Decisionmaking

These responses to the communitarian position do not show that patient choices about treatment always trump the choices of family members, and they do not cut against Hardwig's argument for joint medical decisionmaking by all affected family members. What they show is only that the dominant patient-centered medical ethos cannot be refuted by the sort of all-out attack on the notion of individual rights the communitarian launches. To be sure, an adversarial and legalistic conception of individual rights is ill suited to those cases where family relationships are nonadversarial and there are no deep conflicts of interests, preferences, or values among family members. But if this is the basis for the communitarian claim that community renders individual rights (including patient rights) useless or of minor importance, the communitarian betrays a distorted and incomplete understanding of rights.

Should the choices of competent patients trump the choices of family members, except in the rarest of circumstances? "It is an oversimplification to say of a patient who is part of a family," Hardwig notes, that "it's his life" or "after all, it's his medical treatment" (p.6). Plainly, this by itself hardly shows that patient choices take priority over the choices of others, for when lives are so intertwined that one life cannot be shaped without also shaping the lives of others, it's their lives too. Another approach is to argue for a unilateral decisionmaking right for patients on the ground that patients have more to lose than their family members. That is, when we measure the sacrifices that family members must make for a patient's health care and the costs to the patient of not receiving the treatment that, other family members aside, he or she would select, the patient's sacrifices almost always outweigh the family's. Of course, the reverberations of patients' self-regarding choices can be so shattering to the lives of other family members that a calculation of relative costs favors the family instead. But familial hardship from this source is usually less of a burden than serious illness, and this difference would be sufficient to establish at least a presumption in favor of patient decisionmaking.

But if the ethos of patient autonomy survives the challenges I have considered in this paper, it is nevertheless the case that current medical practice and medical ethics can be faulted for not giving the family a more prominent place in medical decisionmaking for competent patients, and that both family members and patients suffer as a result. For one thing, as we learned from our discussion of Hardwig, because treatment decisions often do have a dramatic impact on family members, procedures need to be devised, short of giving family members a share of decisional authority, that acknowledge the moral weight of their legitimate interests. For another, though patients might well benefit from family involvement in the process of formulating views about medical treatment, under the regime of patient autonomy patients tend to be treated for the most part as if they were solitary decisionmakers, isolated from intimate others.

The ethos of patient autonomy rightly understood takes seriously the impairments of autonomy that affect us when we are ill. Patients are not ideally autonomous agents but anxious, fearful, depressed, often confused, and subject to ill-considered and mistaken ideas. If we are genuinely concerned about ensuring patient self-determination, we will take these factors into account. Here it is necessary to distinguish, as Jay Katz does, between "choices" and "thinking about choices."[12] According to the dominant medical ethos, choices properly belong to the patient alone. At the same time, patients' capacities for reflective thought and effective action are limited and precarious, obliging them to converse and consult with supportive and caring others if they are to make their best choices. Patients' psychological capacities for autonomy can be enhanced by searching conversations with their physicians--the main point of Katz's book--and (I would add) by conversations with other family members.

To explain why this is so, we may turn to a characterization of the family found in Nancy Rhoden's influential law review article, "Litigating Life and Death."[13] Her argument, which focuses on decisionmaking for incompetent patients, finds within family life features that warrant a legal presumption in favor of family choice. Family members are typically the best decisionmakers partly because of their special epistemic qualifications: they ordinarily have deep and detailed knowledge of one another's lives, characters, values, and desires. This knowledge might be based on specific statements made by one family member to another, for the intimacy of family life encourages and is partly constituted by the unguarded disclosure of one's most private thoughts and deepest feelings. But there may be nothing specific that was said or done to which family members can point as evidence of another member's preferences. Indeed, their knowledge, acquired through long association and the sharing of intense life experiences, is characteristically of the sort that "transcends purely logical evidence." In addition, family members are the best candidates to act as surrogates for an incompetent patient because of their special emotional bonds to the patient. This is important because possessing deep and detailed knowledge of another can put one in an especially good position to frustrate no less than fulfill this person's desires. Family members, however, can be presumed to have a deep emotional commitment to one another, and this makes it likely that they will put their knowledge to the right use--that is, that they will decide as the patient would have wanted.

Those features of families that, in Rhoden's view, justify a legal presumption in favor of family decisionmaking for incompetent patients--intimate knowledge, caring, shared history--also provide good reasons for family involvement in the competent patients' thinking about choices. Family members would have no veto power over a patient's decision and would have to honor the choice ultimately made, no matter how foolish or idiosyncratic. But in family conferences, where the process of making a decision is shared, they could encourage the patient to evaluate different treatment options in terms of their impact on the interests of other family members, and could attempt to persuade the patient that the best choice is one that is fair to all affected parties. In some cases, understanding what a particular treatment decision would cost other family members might give the patient a compelling reason to alter an initial choice.

For the physician, the duty to respect patient autonomy has as its corollary a duty to engage in conversation with patients and to encourage and facilitate conversation between patients and other persons to whom they are close (including family members), unless the physician has reason to think that such conversation will not in fact assist the patient in making autonomous decisions. Current medical practice does not in general reflect a commitment to foster this sort of conversation as an integral part of the physician's professional responsibility. But if, as Katz suggests, genuine respect for patient autonomy is shown not merely in accepting patients' yes or no response to a proposed intervention, but rather in facilitating patients' opportunities for serious reflection on their choices, then promoting discussion and dialogue between patient and family is an important part of the physician's duty to satisfy the patient's right of self-determination.

A useful parallel can be drawn here with a central tenet of family medicine. Family physicians stress the importance of adopting a systems approach to health and disease in which the patient is seen as part of a family system. It is the individual patient, not the family unit, that is the primary focus of care, most family physicians will say, but since poor family dynamics can predispose to or cause disease and illness, effective treatment of the patient requires sensitivity to the multiple roles of faulty family relationships in the etiology of disease. In other words, to use language familiar to family physicians, if the physician is to treat "the patient in the family" appropriately, the physician must be cognizant of "the family in the patient."[14] My remarks about promoting and facilitating family involvement in the process of decisionmaking make a similar point about the importance of physicians' generally extending their attention beyond the individual patient. Only now the rationale for doing so is not that family relationships may contribute to the illness the physician is trying to treat, but that family communication may assist patients in making autonomous decisions about how or whether to treat their illness. The family is the center of most people's lives, for better or for worse, and this means both that the health of individuals is most profoundly influenced by family relationships and that such relationships can play a vital role in restoring the autonomous functioning that illness undermines.

References

[1.] John Hardwig, "What about the Family?" Hastings Center Report 10, no. 2 (1990): 5-10.

[2.] Hardwig's proposal to "reconstruct medical ethics in light of family interests" (p. 10) is novel in that it rejects the model of patient-as-primary-agent for acute care. Others have argued, along lines similar to Hardwig's, that this is not the appropriate model for home care, where family members share heavily in the burdens of care on an ongoing basis. In the view of Bart Collopy, Nancy Dubler, and Connie Zuckerman, for example, "the ethical problem for home care becomes one of gauging the interplay of agents, the relative weight to be granted to the autonomy and interests of the family vis-a-vis those of the elderly recipient of care." While not disputing the value of the patient-centered model in acute care, these writers argue that decisionmaking in home care should be "an interactive process, involving negotiation, compromise, and the recognition of reciprocal ties." See "The Ethics of Home Care: Autonomy and Accommodation," special supplement, Hastings Center Report 20, no. 2 (1990): 1-16, at 9, 10.

[3.] See Terrence F. Ackerman, "Why Doctors Should Intervene," Hastings Center Report 12, no. 4 (1982): 14-17.

[4.] One author who has advanced something like a communitarian position is James Lindemann Nelson. See his "Taking Families Seriously," Hastings Center Report 22, no. 4 (1992): 6-12.

[5.] Michael Sandel, Liberalism and the Limits of Justice (Cambridge: Cambridge University Press, 1982), pp. 170-71.

[6.] Charles Taylor, "Atomism," in Powers, Possession and Freedom, ed. A. Kontos (Toronto: University of Toronto Press, 1979), p. 42.

[7.] Sandel, Liberalism, p. 33.

[8.] In a similar vein Alasdair MacIntyre, taking as his "moral starting point" the "fact that the self has to find its moral identity in and through its membership in communities," attacks the language of rights for its individualism and the ahistorical and asocial conception of the self it expresses. See After Virtue (Notre Dame, Ind.: University of Notre Dame Press, 1981), pp. 1-5, 64-67, 204-5.

[9.] John Hardwig, "Should Women Think in Terms of Rights?" Ethics 94, no. 3 (1984): 441-55, at 446.

[10.] Neera Badhwar, "The Circumstances of Justice: Liberalism, Community, and Friendship," forthcoming in The Journal of Political Philosophy 1 (1993).

[11.] Badhwar, "Circumstances of Justice."

[12.] Jay Katz, The Silent World of Doctor and Patient (New York: Free Press, 1984), p. 111.

[13.] Nancy Rhoden, "Litigating Life and Death," Harvard Law Review 102, no. 2 (1988): 375-446.

[14.] For a critical discussion of the distinctive orientation of family medicine, see Ronald J. Christie and C. Barry Hoffmaster, Ethical Issues in Family Medicine (New York: Oxford University Press, 1986), pp. 68-84.
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Author:Blustein, Jeffrey
Publication:The Hastings Center Report
Date:May 1, 1993
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