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Reconceiving the family: the process of consent in medical decisionmaking.

Medical ethics has rediscovered the family. At least two factors have contributed to widening the focus from the individual. There has been a general revival of communitarian rhetoric in the United States that, of course, brings the role of social relations to the fore. Similarly, we should not underestimate the natural progression and development of medical ethics. Having focused on the rights of the patient for so long, it follows that ethicists now wish to map the relationships surrounding the individual that may affect medical decisionmaking. Because this interest in the family is a concern with the significant relationships that surround the patient, the family is described in terms of "closeness," not biology. This way of describing the family is commonplace in medical ethics and is a meritorious convention.[1] Thus, when John Hardwig asks, "What about the Family?"[2] he asks whether there is any role in medical decision-making for those close to the patient This is the question because our thinking about medical decisionmaking is entirely patient-centered. This patient-centered ethic is systematized as the doctrine of informed consent.

Without much exaggeration it can be said that all of medical ethics is but a footnote to informed consent. It is the concept that first called medicine out of its paternalistic slumber and into the open light of public scrutiny. Informed consent serves as the foundation upon which answers to new questions and problems are constructed. Informed consent is a kind of doctrine, that is, an amalgam of legal and philosophical reasoning with a conceptual framework and a number of specific prescriptions. This framework entails a few basic actions and presupposes certain conditions. At the heart of the doctrine is the legal principle that "the right of a competent person to refuse medical treatment is virtually absolute."[3] The exercise of this right presupposes that the patient must receive all information relevant to the decision to undergo or forgo a proposed treatment and that he or she must comprehend the information. The legal principle indicates that the patient needs to be competent and it is also implicit that the choice is relatively freely made. Although influence is acceptable, all forms of coercion are beyond the pale.[4]

The individualistic nature of this line of thought is clear. The person is conceptualized as possessing a sphere of protected activity or privacy free from unwanted interference. Within this zone of privacy, one is able to exercise his or her liberty and discretion. Within this protected sphere take place disclosure, comprehension, and choice, which express the patient's right of self-determination over her body.[5] Of course, these are legal formulations. The philosophical justification for them draws on egalitarian or democratic intuitions regarding personhood.

The person is opaque to others and therefore the best judge and guardian of his or her own interests. Although the physician may be the expert on the medical "facts," the patient is the only individual with genuine insight into his private sphere of "values." Because treatment plans should reflect personal values as well as medical realities, the patient must be the ultimate decisionmaker.[6] Once we sketch the person in this way, the problem for ethicists is obvious. The doctrine of informed consent is based on an individual profile rather than a family portrait. The individual is outlined first, and only then do we ask where close others may be added to the picture. Because the philosophical and legal premises of the doctrine leave few other reasonable options, the family is usually conceived as comprising competing interests. Such a result is not adequate to our ordinary intuitions regarding the relationship of the patient to the family. Furthermore, these premises limit ethicists to arguing about the relative merits of these rival bundles of interests.

Once we understand the relationship between the doctrine of informed consent and the inability of medical ethicists to adequately describe role of the family in medical decisionmaking, the tasks become clear. To follow the communitarian impulse and characterize the family in a way that transcends an atomistic view of human relations will require a several-part investigation. First, I must critique the traditional doctrine of informed consent and show how it has "hijacked" what questions can be asked about the role of the family. By examining the doctrine's major assumptions and fixing the limits of its application, we can find room for the family in situations where such legalistic thought is inappropriate. Second, I shall explain how several promising "process" models of informed consent better describe the role of the family in medical decisionmaking. Finally, I shall apply these process models to a case and show how they also demand a different role for the physician in the decisionmaking process. Only by exploring the traditional doctrine of informed consent and escaping its individualistic and legalistic assumptions, can we hope to enrich the theoretical picture of the family in the decisionmaking process.

Subverting Individualism in Medical Ethics

The communitarian impulse that has revived inquiry into the family represents a dissatisfaction with the "rugged individualism"[7] that a patient-centered ethic implies. Medical ethicists sometimes investigate the family in the hope of finding a way to place the interests of the patient in proper perspective. Of course, the only way to describe the role of the family is in terms of the doctrine of informed consent, since it is the foundation of medical decisionmaking. In addition to the patient, each member of the family also has his or her sphere of privacy, values, and interests. The obvious question follows: what are the family's rights? Another way of formulating the same question is to ask how we should balance the fights of the individual patient and those of the family when they conflict. This is the framework that virtually every medical ethicist investigating the family has accepted. As a result, the answers vary little in substance even though, at first glance, there seems to be wide disagreement. In this kind of rights-based investigation, the family usually loses to the patient.

John Hardwig advances the most radical view by advocating that we abandon our current patient-centered ethic in favor of a presumption of the equality of interests, both medical and nonmedical, of each family member. This presumption can and usually will be overridden by the patient's interests in optimal health and a longer life.[8] On some occasions, however, the family's interests may outweigh those of the patient and should receive preference. Hardwig's essay is paradigmatic in a number of ways for those which have followed. All agree that the patient is usually vulnerable and in need of advocacy and protection. Therefore, they begin with a strong presumption in favor of the patient's right to be the primary decisionmaker. However, the advance these authors make is that they do not characterize the patient's rights as a trump card. Instead, they model their arguments on a scale of justice. The patient's claims are usually weighty compared to the side of the balance on which family rights rest. On occasion, however, the interests of the patient are not very compelling while the family may have a great stake, financially or emotionally, in what course is followed. All argue that family interests should hold sway to some extent under such circumstances.

Jeffrey Blustein sums up this position when he says, "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."[9] Blustein argues that patients be encouraged to include the interests of family members in thinking about choices but that the choice per se belongs to the patient. James Nelson tilts the scales slightly more in favor of the family. He argues that we should begin with a presumption that the competent patient is the decisionmaker, but acknowledge that this presumption is rebuttable by showing that family interests are sufficiently compelling to override the patient's wishes. Hardwig's position can be interpreted as virtually identical with Nelson's. These arguments are framed in terms of a conflict between the interests of the patient and those of the family. With some exceptions, most such conflicts must be settled in favor of the patient.[10] This is hardly a satisfactory outcome for these inquiries.

Hardwig's essay is, at first glance, provocative and radical because he argues that morality requires heeding family interests. Unfortunately, he asks questions of individual and group rights that must be answered in either/or terms. But it is the dissatisfaction with this kind of rights-oriented individualism that revived discussion of the family in the first place. Furthermore, it is not obvious that the role of the family in decisionmaking is exhausted by discussions of such conflicts. The profundity of the links and bonds between family members is hidden from view in these legalistic discussions of interests and rights. This failure to escape the limitations of rights-based thinking clearly emanates from the acceptance of the doctrine of informed consent. While trying to subvert individualism in medical ethics, these ethicists remain trapped by the individualism implicit in the doctrine. To overcome such individualism, informed consent will have to be rethought. We must also be clear regarding the question to which the doctrine is the answer.

The Family: What's the Question?

We can see that there is an ambiguity regarding the question medical ethicists ask about the family. Is the question, Whose interests and wishes should take precedence when those of the patient and family conflict? or What are the respective roles of the patient, family, and physician in medical decisionmaking? In other words, are we asking what to do in a particular event, such as when wishes irresolubly conflict, or are we sketching the process of decisionmaking? The question of unresolvable conflict has an initial attraction because of its clarity and practicality. Its answer is also clear. The patient's wishes and interests must take priority, but there can be exceptions. This conclusion follows from the legalistic aspect of the doctrine of informed consent. Persons are defined in terms of rights and interests and so conflicts must be resolved in such terms. Answering this question, however, does not explain the more general phenomenon of the family's place in medical decisionmaking, such as in the vast majority of cases that lack an unresolvable conflict.

We noted at the outset that informed consent is not only a legal doctrine, but also includes certain philosophical justifications. The legal doctrine is supported by philosophical notions of self-determination and the opacity of an individual's values. These notions, however, are usually considered tenets of political philosophy. That political philosophy should supply the justifications is natural because the legal notion of informed consent is, in large part, an outgrowth of the right to be free from unwanted government interference in one's affairs.[11] Political philosophy is thereby called upon to just an essentially political doctrine. The political notions of liberty and the right to base decisions on one's private values also do important philosophical work in cases of unresolvable conflict because these are instances in which the state must adjudicate claims. However, when recourse to the conflict resolution mechanisms of the state is not necessary, these conceptions of liberty and privacy seem out of place.

Most major writers on the family in medical decisionmaking implicitly accept the political view of the person contained in the legalistic aspect of the doctrine of informed consent. The competent adult person has developed values and preferences. Informed consent involves a conference in which the physician discloses treatment options along with risks, costs, and benefits to the patient or to the patient and family. A calculation is made regarding what is in the patient's best interest or in the interest of the family unit and the treatment is thereby chosen. When illness transforms a person into a patient, his autonomy is compromised and needs to be restored. Jeffrey Blustein suggests that this is a temporary situation caused by the emotionally traumatic nature of illness and the need to cognize the situation, the treatment options, and the interests of all those affected. Thus, the family can primarily assist with the patient's "thinking" and thereby help to "restore" the patients autonomy.[12] According view, the family's role when there is no unresolvable conflict is trivial and uninteresting.

In sum, certain presuppositions of the traditional legalistic vision of informed consent have caused the dialogue to focus on familial conflict and prevented the question of the family's role in medical decisionmaking from being addressed. These assumptions are that the person is mainly a cognitive animal in need of information and, perhaps, assistance due to impairment in mental functioning, and has a developed set of private and opaque values from which the patient's treatment preferences readily flow. These assumptions not only emphasize the legalistic aspects of the doctrine of informed consent, but lead to conceiving consent as an event. Consent takes place during a conference when information is exchanged and comprehended, and the patient makes a choice evidenced in the signing of the consent form. We see that the legalistic, event model of informed consent and its implicit notion of the person is preventing us from seeing the family in all its richness. Fortunately, as we move away from the literature on the family and examine recent scholarship on informed consent, we find resources on which to draw. Rugged individualism is not the only conception of consent in contemporary bioethics.[13]

Reconceiving Informed Consent

Bioethicists such as Charles Lidz,[14] Howard Brody,[15] and Ezekiel and Linda Emanuel[16] have developed models of informed consent and the physician-patient relationship that do not assume patients have a developed set of private values. Instead, they see informed consent as a process of shared decisionmaking in which the thinking and values of the patient and physician gradually take shape. The legalistic, event model of informed consent conceived the patient and physician as experts over their distinctly private realms with the patient reigning over his or her private values. Process models view the physician and patient as each having access to interrelated and evolving facts and values. They mutually monitor each other in order that their drinking and evaluations become transparent. Once informed consent is conceived in this manner, more integral roles for the physician and for others close to the patient are apparent. Let us illustrate this with a case.

Mrs. L was a fifty-year-old female

who was transferred to this

tertiary care facility from a primary

care hospital. Her husband

visited daily. She also had several

brothers and sisters but no children.

Mrs. L's recent problem

concerned multiple external lacerations

on her hands, chest, and

groin area as well as kidney failure.

These health problems are

related to her long-term insulin-dependent

diabetes. She had suffered

from diabetes since childhood,

but the complications and

consequences of this illness have

increased recently with a leg amputation

being necessary about a

year ago. Shortly thereafter, dialysis

was begun.

The patient was transferred to

the tertiary care facility to have

her lesions biopsied for diagnostic

purposes. These were open,

draining, and very painful to the

patient. Initial work-up ruled out

vasculitis as the causal agent.

Finding the source of the lesions

proved difficult and the hospitalization

became prolonged as

other complications developed.

Ms. L was in great pain and was

placed on a sand bed and given

a patient-controlled analgesia

machine to help provide relief

Despite these measures, pain

continued to be a factor in the

slow process of diagnostic testing.

Mrs. L began to ask the nurses

to stop dialysis. These requests

began about one month into this

hospitalization and continued at

intervals. Each time the requests

became frequent, a discussion

would be held with Mrs. L, her

husband, and the attending physician.

In these meetings, Mr. L

would often ask Mrs. L to change

her mind regarding the dialysis

or other tests she was resisting

"for him." Each time, this request

was granted by the patient after

some resistance. On a couple of

occasions, the patient agreed to

further diagnostic work if her

husband would be able to be with

her through the test. The nursing

staff became increasingly unnerved

by the situation as Mrs.

L would often continue to tell

the nurses that she "really"

wished to stop and "just wanted

to the in peace." This particular

wish was always superseded by the

results of the patient-husband-physician

conferences. Eventually,

it seemed that the patient's

husband also grew tired of the

long hospital stay.

About eight weeks into her

hospitalization, Mrs. L remained

adamant in her treatment refusals

during a conference with her

husband and physician. Mr. L

then agreed to accept her wishes

and agreed to stay by her during

her death. The physician wrote

a DNR order on the chart along

with orders to discontinue dialysis.

Palliative care continued to be

provided. The patient died within

forty-eight hours accompanied

by her grieving husband.[17]

This case is likely to be reported to an ethics consultation service as involving a familial conflict Such conflicts are supposedly what the literature on the family analyzes. Nevertheless, these analyses cannot help because a legalistic, event model of informed consent does not explain the difficulties between Mr. and Mrs. L. Any view of informed consent or the family premised upon a patient with a sturdy set of interests and values must necessarily be beside the point. Mrs. L's wishes and values are not clear or are somewhat inaccessible to her.

The legalistic view of the doctrine of informed consent tells us that a competent patient has a right to reafuse treatment and therefore counsels that we call for a determination of the patient's decisionmaking capacity or competence to give consent. If the patient is competent, then we should stand by her wishes (of course, with some occasional exceptions). Competence typically requires that the patient understand the situation, base her choices on relatively stable values, and be able to communicate her wishes. Unfortunately, this means we must determine which utterances represent fleeting whims and which disclose underlying values. To verify when Mrs. L is "being herself" requires input from someone who knows her well and can place the current episode in a larger context. This role, as the verifier of the patient's competence, has been the most widely accepted role accorded the family. Nevertheless, this approach makes us nervous. Even if we discount selfish motives on the part of family members, it is difficult to know if Mrs. L really has a single set of preferences or values to be verified. Thus, we must take a different, process-oriented approach.

We can view the process of informed consent in cases like the one at hand in one of two related ways. Each emphasizes a different element of the patient's decisional capacity and undermines slightly different assumptions of the event model of informed consent. We can take a clue from event models of informed consent that emphasize the patient's cognitive nature. We then advance the suggestion that the role of the family is to assist the patient's "thinking." This approach is sometimes called the interpretive model[18] because the physician and family assist the patient in interpreting her values and translating them into treatment preferences. This process model allows that the patient has relatively well-developed and stable values but stresses that they may not only be opaque to others, but can also be unclear to the patient. Thus, translating values into treatment choices is not merely logical "thinking" but is a process of self-discovery.

A more radical process model of informed consent is required in those cases, perhaps including that of Mrs. L, where the fundamental layer of necessary values is lacking and needs to be developed. This process of value development is the deliberative model Which of these two process models is more applicable in a given case can be difficult to know. It is seldom clear whether we are helping a patient to uncover her values and translate them into preferences or to develop new values. Thus, these two ways of viewing the process of informed consent, two types of process models, are complementary aspects of one and the same theory of consent.

An Interpretive Process of Consent: Restoring "Thinking"

The interpretive model of consent starts from the assumption that there is a gap between the fundamental core of a human being that we call her values and her "preferences" that are relatively transient, circumstantial expressions of her personality. In many common situations, our preferences reflect no more than taste or whimsy. In choices of gravity, we wish our preferences to reflect who we are, that is, to follow from the values at our core. Sometimes people come to situations with their values and preferences already developed and in harmony. Nevertheless, to assume that this is generally the case in clinical situations is not plausible. Why think a patient has preferences applicable to situations that are rather new? Her prognosis changes, new treatment choices are presented, and the relative merits of ongoing treatments may change. Additionally, the patient gains new appreciation for various treatments as she accumulates experiential information from undergoing them. This continuous refinement of knowledge and development of preferences are important aspects of process approaches to consent.

The interpretive approach focuses on the articulation of preferences from the patient's underlying values. The patient may possess stable values, for example, love of her husband, desire to be relatively pain free, etc., but not yet know how to apply these values to particular treatment choices. Hence, as she gains experience with the treatment and refines her understanding of her illness, the choices follow. This interpretive process model differs from an event model of informed consent in two ways. First, the process model sees the family's role in restoring the patient's thinking as primarily one of providing the appropriate surrounding and context through presence and interaction. "Restoring the patient's thinking" is an experiential and interactive process of which the cognitive deduction from values to preferences is a small moment. Second, the idea that the patient's values and preferences are opaque to others while the patient has privileged access is rejected. Interpreting our values usually involves the feedback of those close to us and often the advice of persons with professional expertise. Just as we are uncomfortable with the idea that a family member can gain access to the patient's real values and definitively say when she is being herself, so too there is something unrealistic in thinking that the patient has private and privileged access to her values. The feedback of others is necessary to one's reality testing and the construction of an interpersonal narrative that forms the framework for choices. Thus, the process of decisionmaking is interpretive in nature.

Although Blustein recognized the need for family to help patients with their thinking, we see that a process model of consent goes beyond this in making "thinking" a metaphor. Though the patient may be quite capable of a syllogistic deduction of treatment choices from her values, illness somehow distances her from her identity and causes a loss of touch with her everyday values. Family members do not merely help the patient to clarify his or her thinking. They take part in the patient's narrative self-discovery that helps her to reconnect with her values and give them meaning as expressed in choices. This self-discovery is not prior to the event of giving consent, but, in a sense, is the process of informed consent.

Our initial hope in cases like Mrs. L's is that matters unfold as the interpretive model suggests: a changing prognosis and new treatment options will interact over time with a relatively stable set of values to produce rational treatment preferences. Values, however, do not always prove to be the kind of unchanging thing that can serve as such an Archimedean point. Mrs. L's values or vision of the good may not be sufficiently developed to make the choices confronting her. In other words, her values are also in process. The patient is not only uncovering values; she is also creating them. For instance, one may, never have developed values or virtues relating to extreme pain or never needed to develop more than the sketchiest concept of personal dignity. Perhaps, such dispositions and character traits exist but are undergoing radical shifts. If so, the justification for family involvement becomes all the clearer. When values must be constructed, this construction process is unlikely to be an individual affair.

A Deliberative Process of Consent: Developing Values

Ezekiel and Linda Emanuel explore the process of choosing oneself and one's values, that is, the deliberative model of physician-patient encounters.[19] In this model, the physician assists the patient by elucidating the values embodied in the different treatment options. Because the patient's values are not fixed, the physician is free, even obligated, to advocate certain values. He is helping to shape the patient's values through his recommendations. The Emanuels do not mention the family in this process, but the justification for familial involvement flows from the same sources. Because we discover our values in dialogue with those closest to us, the family is naturally an integral part of this process. In Mrs. L's encounter with her physician and husband, she is coming to choose her values over time.

If we assume that values do not simply emanate from some ineffable core within us but take shape through interaction with our environment, the family is a natural part of this process. Much of our youth is spent internalizing the values of close others. In adult life our values usually are not acquired through mere passive internalization, but this process has a dialectical character. Furthermore, we seldom decide our values in a single, irrevocable act of will. Instead, values must become sturdy and defined if they are to form the foundation for our preferences. They must take shape and concretize. By "trying out" expressions of these developing values with dose others, they begin to take shape and become firm. There is still a further reason for including the family. As in Mrs. L's case, these values are often about them. In part, the values Mrs. L is developing or re-ranking are about her love for and relationship to her husband. To truly know whether she has arrived at the proper ordering may require testing them together with him. Similarly, his values may also be developing and changing, and these values are about her.

In an ongoing dialogue between intimates, there will be a mutual discovery and shaping of values. In the particular case at hand, Mr. L may simply have the more stable values, or his are challenged less by the present situation. For whatever reason, he does not seem to experience the vacillation that his wife undergoes. This is merely the fact of this case. Nevertheless, a family member, especially one who is often the patient's primary caregiver, may undergo a process of self-discovery and adoption of a new value structure in the same way that patients often do. In this particular case, Mr. L eventually tires from the prolonged course and then supports his wife's treatment refusal. We do not know whether this is adapting his same long-held values to a changing situation (the interpretive model) or a fundamental reordering of priorities (the deliberative model). Either way, informed consent is a process of mutual self-discovery. Family does not simply provide the context for the patient's thinking in the way a familiar object would. In the process of decisionmaking, the context is also dynamic.

In sum, we see that process models of informed consent are comfortable with active roles for physicians and families in the medical decisionmaking process. This comfort with collaborative decisionmaking grows from the assumption that values are not the hidden and privileged property of the individual. They take shape publicly, and when they are opaque or absent their discovery or construction is also a communal process. Nevertheless, several questions may trouble us. On what basis might the physician legitimately advocate certain values? Should the physician advocate these values only to the patient or also to the family since the family's values are also in process? Is the physician simply one more person in the process of informed consent or docs he occupy a particular role in the relationship between the patient and family? In other words, the process models of informed consent suggest active roles for the physician and family and we must more clearly define and circumscribe these roles. In cases like the one at hand, these are not abstract questions. There is something about Mr. L's behavior that makes us uneasy and raises the question of the physician's obligation to the patient and to him.

Reconceiving the Roles of the Physician and Family

The physician's role requires justification for two reasons. First, the physician is being characterized as an advocate of certain values, and we must provide appropriate content and reasons for this advocacy. Second, we have allowed a much greater role for the family, and we need a counterweight to prevent the family's role from becoming a coercive one. We must be careful to avoid justifying unbridled paternalism in the name of family values. Ezekiel and Linda Emanuel propose that the physician's advocacy is legitimate because she only advocates health-related values. Certain of these are deemed more worthy than others. It is easy to imagine that health is more worthwhile than sickness, and therefore good eating, hygiene, and exercise habits can uncontroversially be advocated. But what should the physician advocate in Mrs. L's case? How can the doctor avoid his professional bias to treat this patient as long as there is a medical treatment at hand? Perhaps we can take a cue from the literature on patient competency and suggest a sliding scale or risk-related standard of advocacy.[20]

In assessing patient capacity to give informed consent, the standard of competence is based upon the risks and benefits of a proposed course of treatment. When patients wish to consent to a treatment that poses few risks and whose benefits are considerable and clear, they do not need great comprehension of the situation. Mere awareness will justify allowing the patient to make this decision. However, to refuse this same treatment, especially if the refusal will place the patient in great jeopardy, we need to be sure the patient truly appreciates the ramifications of her choice. As the risks of a treatment increase and the benefits become more dubious, one again relaxes the standard of competence needed to refuse. The physician need only require that the patient understands what she is being told. This same schema may be transposed upon the present case. Instead of focusing on the patient's cognitive capacity, we can apply this scale to the relative stability of her values. For instance, to refuse a clearly beneficial treatment that poses few burdens, the decision must represent rather stable values of the patient. If the refusal does not, the physician is justified in more strenuously advocating for the treatment. Thus, by advocating "health-related values only," we are talking about common notions of clear benefits to health. When such benefits are not so clear, advocacy recedes. This same schema can guide the physician in deciding how intense to allow the family's persuasive efforts to become.

Mrs. L's case reflects this sliding-scale model of decisionmaking. Early in the patient's treatment course, it was thought that diagnostic work would reveal the cause of her lesions. The caregivers hoped that once the etiology was revealed, the lesions could be treated and the patient restored to a more comfortable state. Refusals of treatment and diagnostic work at that point would have run counter to a commonsense notion of a risk/benefit calculation. Thus, the physician was justified in further investigating the strength of the patient's views and whether this refusal was "in character," that is, reflective of relatively stable values. In this kind of investigation, the family can be helpful. If the refusal was firm enough to stand up to the influence of the physician and husband, of course, the refusal should have been honored. But it was not.

As the course of diagnostic work and treatment grew longer, the expected benefits of the medical interventions declined in value. At the same time, the persistence of Mrs. L's requests to stop dialysis indicated that this desire reflected a new value that was becoming stable or that she was interpreting this treatment refusal as indicative of her long-held values. Thus, the exertion of influence to persuade the patient differently became less and less justified. Fortunately, the influencing family member also came to discover and hold the same values or same reinterpretation of old values as the patient. He engaged in the process of mutual self-discovery with her. Had Mr. L failed to evolve in the way Mrs. L did, the sliding-scale approach would have justified the physician's influencing Mr. L to acquiesce to his wife's wishes and persuading Mr. L to be supportive of her desires in the conferences. If this effort had failed, the physician should have sought formal institutional mechanisms to protect the patient from her husband's influence. In other words, although Mr. L's behavior might have remained the same, the changing clinical situation and the development of stable wishes or values in the patient meant that his persistence would no longer be seen as influence, but as coercion.

The physician remains the patient advocate. He tries to relieve the patient's pain and suffering and restore her to health. To actually determine the means of doing this, and to be sure that such means do not violate the patient's autonomy, the physician must engage in the process of informed consent with the patient. In some cases, the family will provide assistance merely by verifying the patient's competence by vouching for the stability of the patient's values and wishes. In other cases, these values may be below the surface and need to emerge to meet the weighty challenges posed by the illness and choices that must be made. The family provides a kind of personal and social context for the exploration of the meaning of values for the present situation. Sometimes, however, the situation requires that new values be chosen or developed because there are none available that adequately address the changing situation. In these situations, the physician is truly "treating the family" because they are the soil out of which the patient's values and preferences grow.

As we have noted, the physician must be careful to monitor the emergence of such values in both the patient and family and to assess their relative stability. In doing this, he is doing no more than has traditionally been seen as assessing competence to give informed consent. In these assessments, he must muddle through with his professional and commonsense evaluations of the merit of proposed treatments and the rationality of choices that are made. Ultimately, he must be willing to engage in a process that strains the limits of his clinical judgment.

Reconceiving the Family

Clinicians may be running well ahead of medical ethicists in dealing with families. This is a surprising situation for bioethics because of clinicians' initial resistance to the development of informed consent procedures. However, when it comes to the role of the family in medical decisionmaking, ethicists have fallen prey to "either/or" thinking; for example, the patient's wishes versus the family's.

Bioethicists argue that either the patient must make the decision or the family must make it. This disjunction is resolved in the patient's favor, relegating the family to an afterthought in the process. This argument is sound but limited in its range of application. Arguments that affirm patient rights are important mainly in cases in which the patient has developed and stable views. In such cases of unresolvable conflict between patient and family, a legalistic, event model of consent is appropriate. In the cases that demand more profound self-discovery, the family should be described in a more nuanced manner.

When the values, wishes, preferences, and thoughts of the persons involved are in transformation, only the family truly can be said to exist. The previously existing individuals have metaphorically dissolved into this group due to crisis--but also are in the process of emerging from the unit with developed and stable values. In other words, they will again become individuals. Then, communitarian formulations should recede as interests and rights can be identified and become weightier considerations. This process of vacillation between identity and difference makes the family a metaphysically mysterious entity that has eluded capture by legalistic models. In sum, I am advocating that we view the development of patient autonomy as the goal of the process of informed consent rather than as something given or in need of restoration. The family, as those who have been reciprocal participants in the attainment of the patient's personhood,[21] have a natural place in the ongoing process.


I would like to thank Bob Arnold, William Gardner, Sandy Janaszak, and Mark R. Wicclair for their suggestions on earlier versions of this manuscript.


[1.] See The President's Commission for the Study of Ethical Problems in Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment, Washington, D.C.: U.S. Government Printing Office, 1983), p. 127; Allen E. Buchanan and Dan W. Brock, Deciding for Others: The Ethics of Surrogate Decision Making (New York: Cambridge University Press, 1989), p. 136. [2.] John Hardwig, "What about the Family?" Hastings Center Report 20, no. 2 (1990): 5-10. [3.] Alan Meisel, "The Legal Consensus about Forgoing Life-Sustaining Treatment: Its Status and Prospects," Kennedy Institute of Ethics Journal 2, no. 4 (1992): 309-45, at 319. [4.] Ruth R. Faden and Tom L Beauchamp, A History and Theory of Informed Consent (New York: Oxford University Press, 1986), p. 274. [5.] Faden and Beauchamp, A History and Theory of Informed Consent, p. 123. [6.] Edmund G. Pellegrino and David Thomasma, The Virtues in Medical Practice (New York: Oxford University Press, 1993), p. 74. [7.] James Lindemann Nelson, "Taking Families Seriously," Hastings Center Report 22, no. 4 (1992): 6-12, at 7. [8.] Hardwig, "What about the Family?" p. 7. [9.] Jeffrey Blustein, "The Family in Medical Decisionmaking," Hastings Center Repart 23, no. 3 (1993): 6-13, at 11. [10.] See also, Carson Strong, "Patients Should Not Always Come First in Treatment Decisions, Journal of Clinical Ethics 4, no. 1 (1993): 63-65, 75. [11.] Faden and Beauchamp, A History and Theory of Informed Consent, p. 40. [12.] Blustein, "The Family in Medical Decisionmaking," p. 12. [13.] Thomas A. Mappes and Jane S. Zembaty, "Patient Choices, Family Interests, and Physician Obligations," Kennedy Institute of Ethics Journal 4, no. 1 (1994): 27-46, at 31. [14.] Charles W. Lidz, Paul S. Appelbaum, and Alan Meisel, "Two Models of Implementing Informed Consent," Archives of Internal Medicine 148 (1988): 1385-89. [15.] Howard Brody, "Transparency: Informed Consent in Primary Care," Hastings Center Report 19, no. 5 (1989): 5-9. [16.] Ezekiel J. Emanuel and Linda L. Emanuel, "Four Models of the Physician-Patient Relationship," JAMA 267 (1992): 2221-26. [17.] Adapted from Mark G. Kuczewski and Rosa Lynn Pinkus, eds., An Ethics Case-book for Community Hospitals (unpublished manuscript). [18.] Emanuel and Emanuel, "Four Models," p. 2221. [19.] Emanuel and Emanuel, "Four Models," p. 2222. [20.] For detailed discussion of the sliding scale model or risk-related standards of competence see two articles by James F. Drane, "Competency to Give Informed Consent," JAMA 252,(1984):925-27,and "The Many Faces of Competency," Hastings Center Report 15, no. 2 (1985): 17-21, as well as Buchanan and Brock, Deciding for Others, pp. 47-59. [21.] For a detailed account of this process and how it can be extended to decisionmaking for the incompetent patient, see Mark G. Kuczewski, "Whose Will Is It, Anyway? A Discussion of Advance Directives, Personal Identity, and Consensus in Medical Ethics," Bioethics 8, no. 1 (1994): 27-48.

Mark G. Kuczcaski, "Reconceiving the Family: The Process of Consent in Medical Decision-making," Hastings. Center Report 26, no. 2 (1996): 30-37.
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Author:Kuczewski, Mark G.
Publication:The Hastings Center Report
Date:Mar 1, 1996
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