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The Problem of Culture and Truth Telling
MARK KUCZEWSKI and PATRICK J. McCRUDEN
Bioethicists have become very interested in the importance of social groups.
This interest has spawned a growing literature on the role of the family1 and the place of culture2 in medical decisionmaking. These ethicists often argue
that much of medical ethics suffers from the individualistic bias of the dominant culture and political tradition of the United States. As a result, the doctrine of informed consent has come under some scrutiny. It is believed that thereinlies the source of the problem because the doctrine incorporates the assumptionsof the larger society. Thus, informed consent has been reexamined, reinterpreted, 3 and even abandoned as unworkable.4
Our society embraces certain liberal democratic ideals such as the right of individuals to the maximum amount of freedom; that is, to do what they want,
as long as they don?t hurt anybody.5 Of course, we also look for society to provide a certain equality of opportunity.6 Otherwise one?s freedom wouldn?t
mean much. These principles, liberty and equality, provide the foundation for the individual?s pursuit of his or her particular vision of the good life. The state should remain neutral toward competing visions of the good life as long as these visions do not infringe on the rights of others. As a result, the state doesnot advocate a substantive morality but embraces a procedural ethic that allows each to play out his or her own life without interference from the value judgments of others.
Bioethicists have recently called our attention to the fact that this kind of ethic often works better in theory than in practice. Boundaries among individuals are sometimes not clearly demarcated. Although it is fine to speak about the rights of the individual, respecting patient autonomy usually requires a process of collaborative decisionmaking. This process involves not only the patient and physician but those who are close to the patient. Patient autonomy becomes a reality when treatment decisions are made in the way that patients typically make their other significant decisions. This often creates a legitimate role for the family in the decisionmaking schema.7
Similarly, some have noted that it is not only the significant interpersonal relationships that challenge medical ethics? conception of patient autonomy but also the patient?s culture.8 The very concept of patient autonomy is a product of our Western culture, which values individual freedom and self-determination.
Insofar as these cultural assumptions are shared by the parties in the clinical encounter, medical ethics is equipped to handle the situation. However, when the patient and the patient?s family are from a culture whose values are quite different, our ethic may be invalidated. If so, it is not clear how the clinician should proceed. It could follow from these premises that medical ethics is Cambridge Quarterly of Healthcare Ethics (2001), 10, 34?46. Printed in the USA.
34 Copyright ? 2001 Cambridge University Press 0963-1801/01 $12.50 relative to culture and physician behavior would best be guided by the norms
of the patient?s community. In short, one could argue for a culturally relative medical ethics.9,10 We believe that the concerns about the individualistic nature of medical ethics are important. The rhetoric of informed consent still emphasizes selfdetermination despite the fact that good scholarship has expanded what bioethicists mean by that term. This scholarly trend toward a less individualistic, more process-oriented notion of informed consent and its resulting role for close others is salutary. However, it is not exactly clear what many of these critics of informed consent are seeking. Typically, compromises are called for because the ?dominant Western bioethical concepts and principles are problematic? and ?routine application of these concepts and principles may pose difficulties.? 11 Although cautious, some argue that informed consent can be compromised. For instance, ?[d]eviation from the usual formal standards of informed consent would be justified only by reference to patient-centered values.? 12 And, of course, others have astutely observed that, in practice, informed consent is often compromised and truth withheld in the attempt to be culturally sensitive.13
Although cultural sensitivity is important, we shall argue that any suggestion that we should step outside our ethical framework entirely in favor of the
ethic of the patient?s culture is mistaken.14 Such suggestions should not guide clinical behavior. We will justify this claim in two ways: (1) by reiterating the reasons our culture holds informed consent so dear and building on this foundation, and (2) by rebutting the epistemological assumptions of a culturally relative medical ethics. Furthermore, our skepticism regarding the use of culture in clinical decisionmaking might suggest that the study of culture is of no use to the clinician. We offer some preliminary speculations regarding why we believe that conclusion is overstated.
The Current Dissatisfaction with Individualistic Medical Ethics On a philosophical level, we can describe bioethicists? recent concern with
social groups as an attempt to replace a liberal individualistic view of the person with a more communitarian notion. Apologists in the liberal tradition,
such as John Locke and John Rawls, justify a social system that maximizes personal freedom and individual rights. The motivation for such a social system
stems from the fact that agreement on ways of life and moral issues can be very hard to come by. As a result, these apologists turn to the rights of the
individual as the fundamental political notion. They also describe the corresponding view of human nature that justifies such a political system. In other
words, they must explain why rational persons would necessarily choose to live under such a system by explaining what a person is like.
The self that is natural to liberal democracy is one for whom facts and values are distinct entities. Facts are external things that are objective and measurable.
Values are internal entities that are subjective and beyond the realm of rational intersubjective evaluation. There is no way to resolve conflicts over fundamental values and, so, no way to contest the relative merits of ways of life and death. Where each individual obtains his or her values is not important for the theory. The values of an individual are ?the given.? This individual is the arbiter of his own values and the one who determines his best interests. The Informed Consent
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self is unencumbered by social ties in the sense that others are not related toone?s essence but are other competing bundles of values and interests. Such
persons would clearly choose a social system that allowed each to develop his particular vision of the good life according to his own values.
The individualistic conception of the self makes sense of the doctrine of informed consent in terms of the patient?s civil rights. The physician brings
the facts to the patient regarding the diagnosis, prognosis, and possible courses of treatment with their attendant risks and benefits. Physician paternalismtoward the patient is unjustified because the physician?s values have no place in the actual treatment decision. The patient applies his or her values to the facts and determines which course of treatment is best. Because his or her values are private matters hidden even to close others, the role of the family is theoretically limited to helping the patient overcome the disorienting effects of the institutional environment and to helping the patient to think more
clearly.15
Bioethicists writing in a communitarian vein have challenged this vision of the person.16,17 When working in the clinical setting, it is apparent that persons are not self-sufficient entities. One?s values are not necessarily mysterious things developed privately, and they are seldom completely subjective or arbitrary.
Although our society may be suffering from the decline of the extended family, most patients still come to the hospital with close, concerned others. These persons may fill a variety of different roles. Typically, they not only help the patient to become oriented to the disorienting environment of the healthcare facility by their presence, but they also actively engage the patient in procuring and interpreting diagnostic and prognostic information, and help the patient to make healthcare decisions that are in line with ?who the patient is?; that is, in accord with his or her values. Similarly, the patient may be confronted with a life crisis for which her existing values are inadequate and need to be developed or rethought. In this process, close others play such an integral role in the formulation and testing of the developing values that the boundaries among persons may temporarily blur. However, once the crisis has passed, certain boundaries among persons again deserve respect. It then makes increasing sense to speak the language of patient self-determination or respect for autonomy.
Thus, patient autonomy is often the result of a process of engagement and dialogue with significant others. Autonomy can be the end, the goal, the ?telos?
of the informed consent process, not simply its precondition.
The salient characteristics of this more communitarian notion of the person are evident. The chief feature is an emphasis on the public nature of values.
They are not hidden and private but formed and interpreted in interpersonal relationships. This interpersonal determination of values is a kind of ?discovery? or ?mutual self-discovery.? 18 Values are not just arbitrarily chosen but have something of a life of their own as part of the narratives of the people involved. These narratives will, of course, be influenced and shaped by many forces including the culture of the persons involved. As a result, informed consent must necessarily be a process that involves the social group.
As is evident, a process-oriented notion of informed consent and the communitarian model of the person it presupposes are complementary to the
rights-oriented model of traditional medical ethics. Sometimes patients have well-developed, stable values and preferences and the choice before them is
clear. In such instances, ethics should focus on safeguarding the patient from Mark Kuczewski and Patrick J. McCruden
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unjustified paternalism or coercion. But, for many people, illness profoundly changes their prospects and requires that they seriously adjust their worldview.
In such cases, any talk about safeguarding their rights is usually beside the point. Generally, these patients need the help and involvement of others,
not the imposition of rigid and artificial boundaries.
The communitarian conception of the person raises an important question.
That is, once we admit such an important role to the social world that surrounds the patient, how is it that we are then able to draw any boundaries
between the patient and others? Why do we not completely identify the interests of the person with those of the group? This question has the possibility of subverting the doctrine of informed consent entirely. If the person?s interests and values are tied to the social group, then the concept of informed consent may not apply to cultures or social groups that do not value it. In effect, the communitarian view of the person opens the door to a kind of cultural relativism in the clinic. To determine the degree of force of this line of reasoning, we must move beyond abstract discussion to the specifics of the doctrine and its range of application in the world of clinical cases.
The Cultural Challenge to Informed ConsentThe doctrine of informed consent has certain basic features. The patient must be given information. In other words, disclosure of the diagnosis and prognosis must be made, treatment proposed, the risks and benefits of the treatment outlined, alternative options highlighted. The patient must, to some extent, grasp the information and then make a choice to accept or refuse the treatment.
Certain conditions must also obtain. That is, the patient must be free from undue influence or coercion and the patient must have the cognitive and affective capacity to make the decision (i.e., the patient must be competent). Competence provides a road into the consent process for social groups.
When informed consent is a relatively straightforward onetime event, such as might occur immediately before a lifesaving emergency appendectomy, the
patient may have little need of close others to provide a valid consent. However, many long-term chronic illnesses create an ongoing process of informed
consent in which the patient?s knowledge of treatment options and their attendant effects grows through experience. Through this experience, the patient
gains insight into her illness and develops certain evaluations of the treatment options. The physician also goes through a process of refining the diagnosis and prognosis and continues to reassess her evaluations of the treatment options.
The physician and patient mutually monitor each other to ascertain how their respective understandings and evaluations are proceeding.19 For the patient to make competent treatment choices, his or her values must be relatively stable. When consent is an event, the patient issues competent choices from existing values. But when illness demands that the patient reinterpret or develop new values to cope with the situation, close others will be needed to aid the patient in this process of reality testing and personal growth.
The communitarian understanding of the interpersonal development of values through mutual self-discovery will clearly come into play. For instance, values
or interpretations of values may become stable for the patient through the support of family and friends or, conversely, by standing up to the objections of these persons. Thus, the decisionmaking capacity of the patient is partially a Informed Consent
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group function. But, exactly to what degree is the person constituted by the group? Consider the following case.
Case 1
Oscar Ramirez, a 55-year-old patient of Mexican descent, presented with a large growth in his throat. He was told that the growth was
cancerous. Mr. Ramirez was also told that he would need to have the tumor removed and start an aggressive round of chemotherapy. Mr.
Ramirez agreed to the proposed treatment. However, Ramirez?s wife and children told the oncologist that complete truthfulness would
devastate him and that it was their duty to protect him. They supported this claim by saying that their background required that ?la
familia? take this protective role. They added that their culture does not place the same value on the individual?s control of his own life
that most Americans do. Thus, when the tumor could not be completely removed, Mr. Ramirez was merely told that his recovery would
be lengthy and that much treatment would be needed to keep the cancer from recurring. Because of great skill in deception and a tightly
orchestrated effort to conceal the truth, Oscar Ramirez died without ever being told of his terminal illness.
Let us tease out some moral intuitions regarding this case. Case-based reasoning,
also known as casuistic method, will be of help. Casuistry suggests that we should not plunge directly into a case in which our intuitions are unclear. We
should look at similar cases in which the right action readily suggests itself.
Then, by analogy to these paradigms, we can illuminate our path in this problematic case.
A good casuist would tell us to pursue two different paradigms; one in which it seemed correct to withhold the truth from Mr. Ramirez and one in which
it was clearly wrong. We can try out a number of different scenarios in search of these paradigms, but this does not seem to be a difficult exercise. One clear paradigm case in which it would be correct to withhold the truth is one in which Mr. Ramirez would be devastated by the bad news. After hearing of the difficulties in removing the tumor, Mr. Ramirez would slip into a deep, permanent depression and lose any possible enjoyment of the remainder of his life.
Similarly, we would also have a similar paradigm case in one in which Mr. Ramirez wanted the truth withheld. For a variety of reasons, he may prefer this
course of action. Such reasons might include that he simply does not like negative medical news, that bad news would drain off psychological energy
that could be used to fight the disease, that he wishes this situation to be managed in accord with the traditional familial roles his family outlined, and so on. But the reason seems somewhat inconsequential to the choice of the correct action. If Mr. Ramirez clearly does not want to know his diagnosis, we are obligated to withhold it. On the other hand, when we look for a paradigm of truth telling in this instance, it would usually involve a desire by r. Ramirez to want to know his diagnosis. Perhaps he wishes to know for any of a variety of the usual reasons, including setting his affairs in order, finishing the ?unfinished business? of life, and simply managing his end-of-life decisions.
As we compare these paradigms of information withholding and truth telling, we realize that we do not consider them to be equal. We favor those
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paradigms that contain some direct expression of patient autonomy, either by waiver of his informed consent rights or by providing full disclosure to be
more applicable. Is this merely because we are members of a liberal democratic society? Probably not. Not so long ago we thought that persons who were
given bad news routinely became irreversibly depressed. Then, we became familiar with the idea that the adverse reactions patients endured were transient
and that they usually reacted better in the long run if allowed to remain in control of their life and destiny. Even so, the practices of clinicians continued (and might still continue) to be less than completely truthful.20 Nevertheless, we realize that there is no need for a paradigm to justify telling the truth. We are in need of paradigms that can justify withholding information.
It is undoubtedly true that, in the short run, Mr. Ramirez does not want bad information. But the traditional doctrine of informed consent is founded on his right to have that information, even when it?s bad, and the empirical postulate that he will be better off in the long run for it. Through the normal social and psychological processes of living, Mr. Ramirez will adapt to the harsh realities and do well. In this belief, communitarian and liberal theorists agree. However, the communitarian has a deeper appreciation for the fact that such processes might be culturally relative and without a community that values taking control of one?s affairs, such processes might not proceed according to the paradigm.
So the disagreement between a communitarian perspective and a liberal theorist about how to proceed in a clinical case of this type may come down to
a different rebuttable presumption. The liberal rights-oriented theorist requiressome direct expression of autonomy even if it be via a waiver of informed
consent. A more communitarian perspective argues that this delegation of authority can also be implicit. Edmund Pellegrino writes:
. . . among many ethnic groups in the United States . . . this delegation of authority is culturally implicit. . . . Withholding the truth from a
patient demands, of course, the utmost care in responding to any occasion when the patient wishes to exert more control.21
If we wish to be true to the process notion of informed consent and retain its communitarian concept of the person, must this conclusion follow? If the patient is from one of the requisite cultures that do not value autonomy, should we accept the family?s statement that such news would ?kill him?? We think not.
Justifying the Hegemony of Informed Consent Communitarianism and cultural sensitivity are complex phenomena. It is all too easy to fall prey to simple-minded solutions. In general, we believe that the communitarian view sketched above suffers from (1) a simple-minded epistemology and (2) a focus that excludes the culture and community of the healthcare professions. Once community membership is seen as the complex matter it is and cultural sensitivity is also extended to the culture of the clinic, we believe that it will be clear that patients must waive their right to information to justify physicians withholding it.
The epistemology of this radical communitarian position posits cultures as opaque to those outside of them. We supposedly cannot appreciate the way
that a different culture sees the respective roles of the persons involved. This Informed Consent
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assumes a sharp distinction between the ?inside? and ?outside? of a culture. Only those on the inside can understand its working whereas those on the
outside must simply accept what the insiders tell us about it. The rationality of a culture is an internal one and cannot be evaluated externally.22 As a result, we are at the mercy of the reports Mr. Ramirez?s children supply about their culture and any survey data about that culture that can confirm a dissimilarity between his culture and those of the clinicians. The opacity of the culture has been substituted for the opacity of the individual of Western liberal theory.
The main problem with this epistemology is that we have little reason to believe that cultures are, in fact, so opaque and able to enforce rigid boundaries between insiders and outsiders. Mr. Ramirez?s case causes us a problem on the gut level because we have a cultural situation explained to us but are not sure how this patient relates to his own culture. Many people who seem to be clearly ensconced in a culture still pick and choose from its beliefs on many points. Mr. Ramirez does not live in one culture but in at least two. Otherwise he would not be in this particular hospital. How he relates to the beliefs of each is currently opaque. But, it need not remain so. We can simply ask him. This would allow him to request information or to provide an explicit waiver of consent.
Second, and perhaps as important, is the fact that we have been speaking as if patients and their families come from cultures but the healthcare providers
have none or one that is not authentic. This radical communitarian view caricatures them as value-free and adaptable to any culture. They normally live
and die by the doctrine of informed consent because they usually encounter people from the Western liberal tradition that values freedom and individualism.
Or, healthcare providers are themselves part of a culture that is value-free in valuing the autonomy of individuals. As a result, the communitarian counsels suggests that they must reign that tendency in when dealing with the content-laden value systems of other cultures. Surely, such a view is mistaken.
The clinic has its own culture and values. Typically, these are health-related values that favor treatment of illness and prolongation of life over pleasure and most other personal lifestyle choices. Clinicians, especially those engaged in clinical research or graduate medical education, also place a strong emphasis on the advancement of knowledge. Similarly, clinical practice is often thought to have an implicit ethos that varies among medical specialties or particular healthcare professions, their ?standard of care.? And, because healthcare professionals are highly educated and respected, they are probably likely to assume that others share these values or to overvalue the worth of their treatments. The doctrine of informed consent evolved to safeguard us from the imposition of this clinical culture on patients.
As we noted at the outset, the doctrine of informed consent requires that the physician disclose all of the pertinent facts about the diagnosis and treatment options so that the patient may decide if he or she values them to the same degree as the physician. We also saw that this required a certain process, given that it is not always obvious to the patient exactly how he or she values the proposed course of action. This process involved the relaxing of boundaries among persons as values were formed or interpreted. And, this situation can raise concerns regarding the occasional need for the healthcare provider to act as the patient?s advocate in dealing with domineering family members and similar situations that may involve undue influence.23 Clinical judgment is Mark Kuczewski and Patrick J. McCruden
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often strained at such moments and there are few objective signposts to guide the clinician. In these situations, some solace is found in the fact that the informed consent process is teleological in nature. That is, patient autonomy is considered the goal or outcome of the consent process. At some point, when the patient?s values and preferences toward a treatment choice clearly become stable, the physician is clearly again the patient?s advocate. Then, communitarian formulations recede as the patient again has an individual identity.
This teleological element is the ultimate safeguard in process models of informed consent. Concerns about the imposition of the values of family members
and healthcare professionals on a vulnerable patient are assuaged by knowing that at some point, the end point, the patient will make an autonomous
decision. A culturally relative medical ethics requires that we suspend this teleological element. In Mr. Ramirez?s case, there was no point at which
patient autonomy clearly emerged. Thus, the only safeguard against the tyranny of the culture of the clinic, a tyranny that never sought the patient?s input on the level of aggressiveness of treatment, was suspended. One might attempt to argue that the clinicians and family were merely trying to respect the patient?s implicit expression of autonomy, but we have absolutely no way to know whether this was more than wishful thinking.
Can Community Consultation Help?
There are situations in biomedical and behavioral research in which informed consent can be waived with the approval of the particular hospital?s or university?s Institutional Review Board (IRB) (45 CFR 46.116(c)?(d)). These situations typically involve ?deception research? in psychosocial experiments and, more recently, certain kinds of emergency research (45 CFR 46.102(i.)). These waiver situations are not analogous in important ways because the emergency research protocols are meant to offer the prospect of benefit to the patient, whereas this is not true of deceptive psychosocial research. But in both cases, it is required that the research be important, the risk to patients be minimal, and the research be unable to be carried out any other way. In the case of the emergency research waiver of informed consent, there is a requirement for community consultation. This supposedly involves representatives of the communities in which the research is carried out, public disclosure of the intent to perform the research prior to its conduct, and public disclosure of the results to the community after completion of the study. In particular, the researchers must consult the community most likely to be affected by the research. Can this model be applied to withholding the truth from patients based on a cultural ethos?
This model?s promise increases in situations in which the culture involved is arguably isolated from mainstream influences. As we noted earlier, the argument for a culturally relative medical ethics is based on assumptions that cultures are separate and distinct and opaque to one another. The more these assumptions prove to be empirically true of a particular culture, the stronger the argument that a waiver of informed consent can be accomplished through community consultation. For instance, some authors have argued that the requirements of the Patient Self-Determination Act (PSDA) should be waived for members of the Navajo nation in order to respect their beliefs in the causal power of discussing negative information.24
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To the degree that the Navajo nation is a distinct culture that does not interact with the dominant culture in the United States and can be shown to
have virtually no members whose beliefs deviate from the group, a case can be made that the group can waive the requirement of informed consent and
corollaries such as PSDA requirements. But, empirically demonstrating that the Navajo nation meets these criteria is not merely a matter of showing that most of its members do not desire bad news. If this were the case, then many groups would qualify for such a waiver to the detriment of all those members who wished to know bad news. Furthermore, these groups sacrifice the protection from the culture of medicine that results from the informed consent process.
What must be shown is that the conceptual basis of the Navajo belief (the concept of hozho) is so foreign and opaque to the mindset of American healthcare, that no accommodation can be made that respects both the Navajo culture and the doctrine of informed consent. But, this is another empirical question that should not be dismissed lightly. Perhaps individual questioning upon entry to the hospital as is currently required by the PSDA is not the optimum answer. Nevertheless, that does not mean there are not other creative possibilities that can be developed and that can make the relationship of the beliefs of the individual to the group apparent to treatment providers.
These unusual cases, cases that may include a handful of distinct groups, should not be used to justify individual exceptions such as that of Mr. Ramirez.
Mr. Ramirez is Mexican, and this is a culture that is usually considered Western and has many similarities to European cultures owing to heritage and interaction.
If we substitute an Italian surname for ?Ramirez? and describe him as a seventy-year-old first-generation American, we would be likely to tell the
family that we needed to implement a process that involved their father in decisionmaking. It is an empirical question regarding just how similar Mr.
Ramirez?s case is to his Italian-American counterpart. But, we must not be blinded to the likely similarities by a well-meaning desire to be culturally
sensitive.
Culturally Relative Bioethics: What Would Be the Harm?
The kinds of concerns we are considering are unlikely to lead to disastrous consequences if our views are not shared. Certainly this kind of problem is not on a par with the concerns regarding insurance coverage that plague many of these same cultures and subcultures. But, we believe that respect for persons is an important value in healthcare and the manner in which this concept is implemented is worthy of serious consideration. We believe that ignoring the need to require informed consent or its waiver by the patient will lead to a continued imposition of the values of the clinic and/or the family members onto persons who may not agree with them. Let us consider another case.
Case 2
Mr. Thanh Nguyen was a seventy-two-year-old male patient of Vietnamese descent. He was admitted to the hospital in hypovolemic shock from a ruptured abdominal aortic aneurysm. Vigorous resuscitation was initiated, followed by emergency repair of the aneurysm. Following surgery, the patient remained in critical condition in the intensive Mark Kuczewski and Patrick J. McCruden
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care unit on full support. Sepsis and renal failure that required dialysis complicated the postoperative course. The patient failed to regain consciousness and was maintained in the ICU for many weeks while his various metabolic problems and infections were addressed. The patient
had a peg tube and hemodialysis access placed. A tracheotomy was also performed. Eventually the patient was weaned from ventilator support and inotropic medications. Of necessity, the patient remained on hemodialysis.
Mr. Nguyen?s home was some several hundred miles away in another state, although he did have an adult child living in the same city as the
hospital. Mr. Nguyen was married and, in addition to the local adult child, had several other children who lived within the region, one who
lived a few states away, and two others who lived in foreign countries.
Mr. Nguyen?s wife was living but was herself quite ill and awaiting surgery in another city. Owing to Mr. Nguyen?s decisional incapacity,
his immediate family (i.e., the children who were able to come to the hospital) served as his surrogate decisionmakers. They requested aggressive
treatment for their father. As already noted, treatment was carried out according to family wishes.
After a period of three months it became clear that Mr. Nguyen was not going to regain consciousness. He had been transferred from the ICU to general care but he remained in a vegetative state requiring continued dialysis, tube feeding, and aggressive pulmonary toilet. The attending physician, who was also of Vietnamese decent, communicated regularly with the patient?s children both in person and by telephone. Language was not a barrier among them as the physician spoke Vietnamese and English. The physician was not in contact with the patient?s spouse because of the spouse?s poor medical condition.
The children did not feel that their mother could be burdened with the extent of her husband?s difficulties. They reported that they had told
their mother that her husband was quite sick and unconscious but had not disclosed the permanent nature of this diagnosis.
The physician began discussions with the children regarding code status and the possibility of withdrawal of dialysis in the event of a diagnosis of persistent vegetative state. The adult children understood the grim diagnosis and were willing to accept that the patient would not recover from this illness. However, they were unwilling to communicate this permanence to their mother, feeling that this would impede her recovery and diminish her own will to live. The physician was accepting of this arrangement. As more pressure was brought to bear on family members by other members of the multidisciplinary staff, it became clear that they were in a Catch-22 situation. That is, the family believed that the decision to discontinue treatment could only be made by their mother but simultaneously felt that she could not be asked to make this decision, owing to her poor health. The attending
physician accepted this interpretation of the responsibilities of the adult children to their mother and believed that this course of action
was consistent with this family?s cultural norms. He would not ?go over the heads? of the children by seeking to communicate directly with the patient?s spouse (especially given her own frail health, which he verified by speaking with her personal physician).
Ethics committee consultation was sought, but because of the unusual nature of the situation (i.e., that the ?proper? surrogate was not being consulted), the ethics committee deferred until the proper surrogate Informed Consent
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was involved. There was also discussion of making the family responsible for the cost of the hospitalization (i.e., those costs over and above Medicare reimbursement), but there was little support for this idea.
After several more weeks of continued treatment, it was learned that the eldest son was traveling to the United States from Asia to see his parents and that this son would be willing to take on the responsibility of terminating life support. Ethics committee consultation was requested again and the committee met several days prior to the arrival of the eldest son. The recommendation of the committee was to hold a conference with the eldest son and other available adult children and to try to persuade the family to include the mother in the decisionmaking process. There was disagreement among the committee members. A minority thought that because they were discussing discontinuing a determination of ?futile? treatment, this was the family?s judgment to make. As a result, they argued that any decision by these surrogates would be acceptable and persuasion should be minimized.
The ethics committee was not consulted again. The eldest son arrived and after discussion with attending physician and other family members,
dialysis was discontinued. The patient died several days later.
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