1 1 8 CHAPTER 2

REFERENCES 6 For a specialty opinion to the contrary, see W. H. Coles et

1 Charles W. Lidz et al., "Barriers to Informed Consent," Annals of Internal Medicine 99:4 (1983). 53943.

2 Tom L. Beauchamp and Laurence McCullough, Medical Ethics: The Moral Responsibilities of Physicians (Englewood Cliffs. NJ: Prentice-Hall. 1984).

3 For a concise overview of empirical data about contemporary informed consent practices, see Ruth R. Faden and Tom L. Beauchamp, A History and Theory of Informed Consent (New York: Oxford University Press, 1986). 98-99 and associated footnotes.

4 For efforts to address ethical aspects of primary care practice, see Ronald J. Christie and Bany Hoffmaster, Ethical Issues in Family Medicine (New York: Oxford University Press, 1986); and Harmon L. Smith and Larry R. Churchill, Professional Ethics and Primary Care Medicine (Durham. NC: Duke University Press, 1986).

5 Faden and Beauchamp, A History and Theory of Informed Consent, 2 3 4 9 and 11450. I have also greatly benefited from an unpublished paper by Margaret Wallace.

al., la la chin^ hformed Consent," in Further Developments in Assessing Clinical Competence, Ian R. Hart and Ronald M. Harden, eds. (Montreal: Can-Heal Publications. 1987). 241-70. This paper is interesting in applying to specialty care a model very much like the one I propose for primary care.

7 Jay Katz, The Silent World of Doctor and Patient (New York: Free Press, 1984).

8 Howard Brody, Stories of Sickness (New Haven: Yale University Press. 1987). 17 1-8 1.

9 For an interesting study of physicians' practices on this point, see William C. Wu and Robert A. Pearlman, "Consent in Medical Decisionmaking: The Role of Communication,'' Journal of General Internal Medicine 3: 1 (1988). 9-14.

10 A court case that might point the way toward this line of reasoning is Precourt v. Frederick. 395 Mass. 689 (1985). See William J. Curran, "Informed Consent in Malpractice Cases: A Turn Toward Reality," New England Journal of Medicine 3 14:7 ( 1986). 429-31.

ETHICAL RELATIVISM I N A MULTICULTURAL SOCIETY Ruth Macklin

Macklin explores ethical problems that sometimes arise when a physician and a pa- tient come from different cultural backgrounds. Respect for cultural diversity requires physicians to be generally tolerant or respectful of patients' differing beliefs and practices, according to Macklin. But in some cases tolerance can lead to harm of pa- tients or their family members, while in other cases tolerance apparently conflicts with what mainstream Western ethics regards as the autonomy-based rights of the patient (e.g., the right to disclosure of medical information). In analyzing these eth- ical problems, Macklin attempts to determine which of the values involved are cul- turally relative and which are based on universal ethical principles.

Cultural pluralism poses a challenge to physicians and patients alike in the multicultural United States, where immigrants from many nations and diverse religious groups visit the same hospitals and doctors. – I s d e f i n e d w l

-0- . .

. . — (Fowers alid

Richardson 1996, p. 609). This sounds like a value

Reprinted with permisrion o f the publisher from Ke~~nedv lnsrirrrte of Ethics Joirmol. vol. 8. no. I (March 1998). pp. 1-2.4-15, 17-72. Copyright 0 1998 by The Johns Hopkins University Press.

that few enlightened people could fault, but it pro- duces dilemmas and leads to results that are, at the least, problematic if not counterintuitive.

Critics of mainstream bioethics within the United States and abroad have

t -v rlghtS. Such critics argue that much-if not most- of the world embraces a value system that places the family, the community, or the society as a whole above that of the individual person. The prominent American sociologist is a prime example of such critics: "From the outset, the conceptual

framework of bioethics has accorded paramount sta- tus to the value-complex of individualism, under- coring the principles of individual rights, autonomy, self-determination, and their legal expression in the jurisprudential notion of privacy" (Fox 1990, p. 206).

The -, at least in the early days of bioethics in the United States, Kaspeuetiq- . . —

' t v w — e -. In

fact, there was little discussion of where the family entered in and a . . a- of. Most patients want and need the support of their families, regardless of whether they seek to be autonomous agents regard- ing their own care. Respect for autonomy is per- fectly consistent with recognition of the important role that families play when a loved one is ill. Au- tonomy has fallen into such disfavor among some bioethicists that the pendulum has begun to swing in the direction of families, with urgings to "take fam- ilies seriously" (Nelson 1992) and even to consider the interests of family members equal to those of the competent-patient (Hardwig 1990). . . .

A circumstance that arises frequently in multi- cultural urban settings is one that medical students bring to ethics teaching conferences. The patient . . and family are merit 1- . . -ally info- – The med- ical students wonder whether they are obligated to follow the family's wish, thereby respecting their cultural custom, or whether to abide by the ethical requirement at least to explore with patients their desire to receive information and to be a participant in their medical care. When medical students pre- sented such a case in one of the conference~ I co-di- rect with a physician, the dilemma was heightened by the demographic picture of the medical students themselves. Among the 14 students, 11 different countries of origin were represented. Those stu- dents either had come to the United States them- selves to study or their parents had immigrated from countries in Asia, Latin America, Europe, and the Middle East.

The students began their comments with remarks like, "Where I come from, doctors never tell the pa- tient a diagnosis of cancer" or "In my country, the doctor always asks the patient's family and abides by their wishes." The discussion centered on the question of whether the physician's obligation is to act in ac- cordance with what contemporary medical ethics dic- tates in the United States or to respect the cultural difference of their patients and act according to the family's wishes. Not surprisingly, the medical stu- dents were divided on the answer to this question.

Medical students and residents are understand- ably confused about their obligation to disclose in- formation to a patient when the patient comes from a culture in which telling a patient she has cancer is rare or unheard of. . '<

Amenc.Rn.cuntnm.of the the– . .

tomof withh-?' miscRst,– -ve c- -. It is not, therefore, the cul- tural tradition that should determine whether disclo- sure to a patient is ethically appropriate, but rather *- to colgngl -* w, to leave communications to the family, or something in between. It would be a simplistic, if not unethical response on the part of doctors to reason that "This is the United States, we adhere to the tra- dition of patient autonomy, therefore I must disclose to this immigrant from the Dominican Republic that he has cancer."

Most patients in the United States do want to know their diagnosis and prognosis, and it has been amply demonstrated that they can emotionally and psychologically handle a diagnosis of cancer. The same may not be true, however, for recent immi- grants from other countries, and it may be mani- festly untrue in certain cultures. Although this, too, may change in time, several studies point to a cross- cultural difference in beliefs and practice regarding disclosure of diagnosis and informed consent to treatment.

One survey examined differences in the atti- tudes of elderly subjects from different ethnic g;oups toward disclosure of the diagnosis and prog- nosis of a terminal illness and regarding decision making at the end of life (Blackhall et al. 1995). This study found marked differences in attitudes between

Korean Americans and Mexican Americans, on the one hand, and African Americans and Americans of European descent, on the other. The Korean Ameri- cans and Mexican Americans were less likely than the other two groups to believe that patients should be told of a prognosis of terminal illness and also less likely to believe that the patient should make decisions about the use of life-support technology. The Korean and Mexican Americans surveyed were also more likely than the other groups to have a family-centered attitude toward these matters; they believed that the family and not the patient should be told the truth about the patient's diagnosis and prog- nosis. The authors of the study cite data from other countries that bear out a similar gap between the pre- dominant "autonomy model" in the United States and the family-centered model prevalent in Euro- pean countries as well as in Asia and Africa.

The study cited was conducted at 31 senior cit- izen centers in Los Angeles. In no

bersfa Lnrosure ~r n-e to the u m F o r t y – s e v e n percent of Korean Americans believed that a patient with metastatic cancer should be told the truth about the diagnosis, 65 percent of Mexican Americans held that belief, 87 percent of European Americans be- lieved patients should be told the truth, and 89 per- cent of African Americans held that belief.

It is worth noting that the people surveyed . . were all 65-years-old or older. Korean and M-n A m u c a o s e n i o w . . . h

to the c g h c s d w I

@e At? W n Ameman$ -n the U n n s . Another finding was that among the Korean American and Mexican American groups, and thos-

socioeconomic status t a d e d to . . t l u n g more

s t ro~gly than the younger, wealthier, and more highly educated members of these same groups. The authors of the study — c l a U A u l d i l S k ~ ~ t o r e c e i v P – bm_am.d&dus wega~dmgtreatment or whether they prefer that their families handle such matters.

Far from being at odds with the "autonomy model," this conclusion supports it. To ask patients

how much they wish to be involved in decision mak- ing does show respect for their autonomy: patients can then make the autonomous choice about who should be the recipient of information or the deci- sion maker about their illness. What would fail to show respect for autonomy is for physicians to make these decisions without consulting the patient at all. -only to t h w w- —

. . . . p t w hf- pf the nast and in

accordance with the way many physicians continue to act in other parts of the world today. Furthermore, if physicians automatically withheld the diagnosis from Korean Americans because the majority of people in that ethnic group did not want to be told, they would be making an assumption that would re- sult in a mistake almost 50 percent of the time.

INTOLERANCE AND OVERTOLERANCE

A medical resident in a New York hospital questioned a patient's ability to understand the medical treatment he had proposed and doubted whether the patient could grant truly informed consent. The patient, an immigrant from the Caribbean islands, believed in voodoo and sought to employ voodoo rituals in addi- tion to the medical treatment she was receiving. p h – –

w 7 " m –

i-. The medical resident was an observant Jew who did not work, drive a car, or handle money on the sabbath and adhered to Kosher dietary laws. Both the Caribbean patient and the Orthodox Jew were devout believers in their respective faiths and practiced the accepted rituals of their religions.

. , T h P . n ~ t l ~ n t e n d u u & h

If the resident had tried to bypass or override the patient's decision regarding treat- ment, the case would have posed an ethical problem requiring resolution. Intolerance of another's reli- gious or traditional practices that pose no threat of harm is, at least, discourteous and at worst, a preju- dicial attitude. And it does fail to show respect for persons and their diverse religious and cultural prac- tices. But it does not (yet) involve a failure to respect

T H E P H Y

persons at a more fundamental level, which would occur if the doctor were to deny the patient her right to exercise her autonomy in the consent procedures.

. . *s

with the ~ati-ecisions. Two broth- ers of a Haitian immigrant were conducting a con- ventional Catholic prayer vigil for their dying brother at his hospital bedside. The patient, suffering from terminal cancer and in extreme pain, had ini- tially been given the pain medication he requested. Sometime later a nurse came in and found the patient alert, awake, and in excruciating pain from being un- dermedicated. When questioned, another nurse who had been responsible for the patient's care said that she had not continued to administer the pain med- ication because the patient's brothers had forbidden her to do so. Under the influence of the heavy dose of pain medication, the patient had become delirious and mumbled incoherently. The brothers took this as an indication that evil spirits had entered the pa- tient's body and, according to the voodoo religion of their native culture, unless the spirit was exorcised it would stay with the family forever, and the entire family would suffer bad consequences. The patient manifested the signs of delirium only when he was on the medication, so the brothers asked the nurse to withhold the pain medication, which they believed was responsible for the entry of the evil spirit. The 0 the familv's

. . c&gmn reau-r to com -g.&&@ '

. . bakdqul,e-s

The person in charge of pain management called an ethics consultation, and the clinical ethicist said that the brothers' request, even i f based on their traditional religious beliefs, could not override the patient's own request for pain med- ication that would relieve his suffering.

There are &-rounds&– spsct the.-wh- r e l i g i o ~ s ~ ~ ~ S L l r a I bsliefs. But when beliefs issue in actions that cause harm to others, attempts to pre- vent those harmful consequences are justifiable. An example that raises public health concerns is a ritual practiced among adherents of the religion known as Santeria, practiced by people from Puerto Rico and other groups of Caribbean origin. The ritual involves scattering mercury around the household to ward off

bad spirits. Mercury is a highly toxic substance that can harm adults and causes grave harm to children. Shops called "botinicas" sell mercury as well as herbs and other potions to Caribbean immigrants who use them in their healing rituals.

The public health rationale that justifies placing limitations on people's behavior in order to protect others from harm can justify prohibition of the sale of mercury and penalties for its domestic use for rit- ual purposes. Yet the Caribbean immigrants could object: "You are interfering with our religious prac- tices, based on your form of scientific medicine. This is our form of religious healing and you have no right to interfere with our beliefs and practices." It would not convince this group if a doctor or public health official were to reply: "But ours is a well- confirmed, scientific practice while yours is but an ignorant, unscientific ritual." It may very well ap- pear to the Caribbean group as an act of cultural im- perialism: "These American doctors with their Anglo hrand of medicine are trying to impose it on us." This raises -It auesti– kc health u a s u r e s w b ~orn~e l l ing . . . .

s . Ef- forts to eradicate mercury sprinkling should enlist members of the community who agree with the pub- lic health position but who are also respected mem- bers of the cultural or religious group.= t h l c r l m o m ! ~ ~

pmL+tc4/L&&d 7

BELIEF SYSTEM OF A SUBCULTURE

Some widely held ethical practices have been trans- formed into law, such as disclosure of risks during an informed consent discussion and offering to pa- tients the opportunity to make advanced directives in the form of a living will or appointing a health care agent. Yet these can pose problems for adher- ents of traditional cultural beliefs. In the traditional culture of ~ ~ N a t i Y e B m e r i c a n ~ , ~ a d e e . p l y ro~ted culturalbeliefuaderlies asvishnat to_um~ey ccivene&vein£ormatim. A study conducted on a Navajo Indian reservation in Arizona demonstrated how Western biomedical and bioethical concepts and principles can come into conflict with tradi- tional Navajo values and ways of thinking (Carrese and Rhodes 1995). In March 1992, the Indian Health Service adopted the requirements of the Patient

Self-Determination Act, but the Indian Health Ser- vice policy also contains the following proviso: "Tribal customs and traditional beliefs that relate to death and dying will be respected to the extent pos- sible when providing information to patients on these issues" (Carrese and Rhodes 1995, p. 828).

The -tkconWt w e n -muande have l h w shape rea -. The central con- cern posed by discussions about future contingen- cies is that traditional beliefs require people to "think and speak in a positive way." When doctors disclose risks of a treatment in an informed consent discussion, they speak "in a negative way," thereby violating the Navajo prohibition. The traditional Navajo belief is that health is maintained and re- stored through positive ritual language. This pre- sumably militates against disclosing risks of treatment as well as avoiding mention of future ill- ness or incapacitation in a discussion about advance care planning. Westem-trained doctors working with the traditional Navajo population are thus caught in a dilemma. Should they adhere to the eth- ical and legal standards pertaining to informed con- sent now in force in the rest of the United States and risk harming their patients by "talking in a negative way"? Or should they adhere to the Navajo belief system with the aim of avoiding harm to the patients but at the same time violating the ethical require- ment of disclosure to patients of potential risks and future contingencies?

The authors of the published study draw several conclusions. One is that hospital policies complying with the Patient Self-Determination Act are ethically troublesome for the traditional Navajo patients. Since physicians who work with that population must decide how to act, this problem requires a so- lution. . . m s of W e s m bioethics are not W e r s a l l y held" (Carrese and Rhodes 1995, p. 829). T.l& comes as no surprise. It is a straightforward stale- ment of the thesis of descri~tive ethical relativism, tbe evident truth that a wide varietv of cultural be- liefs about morality exist in the world. -n f m v e et-: What follows from these particular facts of cultural relativity? A third conclusion the authors draw, in light of their find-

ings, is that health care providers and institutions caring for Navajo patients should reevaluate their policies and procedures regarding advance care planning.

This situation is not difficult to resolve, ethi- cally or practically. The

m u it requires only that health care

institutions provide information to patients and give them the opportunity to make a living will or appoint a health care agent. A physician or nurse working for the Indian Health Service — quirement b v if t h e w — . .

This approach resolves one of the limitations of the published study. As the authors acknowledge, the findings re- flect a more traditional perspective and the full range of Navajo views is not represented. So it is possible that some patients who use the Indian Health Service may be willing or even eager to have frank discus- sions about risks of treatment and future possibili- ties, even negative ones, if offered the opportunity.

It is fl- lloldug from gati–

in a -n. ' fo The article about the Navajo beliefs recounts an episode told by a Navajo woman who is also a nurse. Her father was a candidate for bypass surgery. When the surgeon in- formed the patient of the risks of surgery, including the possibility that he might not wake up, the elderly Navajo man refused the surgery altogether. If the pa- tient did indeed require the surgery and refused be- cause he believed that telling him of the risk of not waking up would bring about that result, then it would be justifiable to withhold that risk of surgery. Should not that possibility be routinely withheld from all patients, then, since the prospect of not wak- ing up could lead other people-Navajos and non- Navajos alike-to refuse the surgery? The answer is no, but it requires further analysis.

Respect for autonomy grants patients who have been properly informed the right to refuse a pro- posed medical treatment. An honest and appropriate disclosure of the purpose, procedures, risks, bene- fits, and available alternatives, provided in terms the patient can understand, puts the ultimate decision in

the hands of the patient. This is the ethical standard according to Western bioethics. A clear exception

in the case of patients who lack decisional ca- p i t y altogether, and debate continues regarding the ethics of paternalistically ovemding the refusal of marginally competent patients. This picture relies on a key feature that is lacking in the Navajo case: a cer- tain metaphysical account of the way the world works. Western doctors and their patients generally do not believe that talking about risks of harm will produce those harms (although there have been ac- counts that document the "dark side" of the placebo effect). m o t reallv the Navaio values-

cross-cultural ~roblem but r– w o l d i n g that thought and lan- guage have the power to shape reality and control events. In fact, the Navajo values are quite the same as the standard Western ones: fear of death and avoidance of harmful side effects. To understand the relationship between cultural variation and ethical relativism, it is essential to distinguish between cul- tural relativity that stems from a difference in values and that which can be traced to an underlying meta- physics or epistemology.

Against this background, only two choices are apparent: insist on disclosing to Navajo patients the risks of treatment and thereby inflict unwanted neg- ative thoughts on them; or withhold information about the risks and state only the anticipated benefits of the proposed treatment. c-.– 1 -. It is true that withholding inforrna- tion about the risks of treatment or potential adverse events in the future radically changes what is re- quired by the doctrine of informed consent. It essen- tially -wM&aymg ,,. 6. The physician will still provide some information to the Navajo patient, but only the type of information that is acceptable to the Navajos who adhere to this par- . . ticular belief system. True, -r- m o ~ a a t would departs from the&ucal ideal b a o e s ~- . @ate goal of baeficence in the care O M .

The principle of beneficence supports the with- holding of information about risks of treatment from

Navajos who hold the traditional belief system. But so, too, does the principle of respect for autonomy.

traditional beliefs can act _au- tpnomouslv onl? t h p y a r e n k i n g in a sgat ive way. If doctors tells them about bad contin- gencies, that will lead to negative thinking, which in their view will fail to maintain and restore health. The value of both doctor and patient is to maintain and restore health. v-

. . . . . ~ n : ;f . . . . -The less-than- ideal version of informed consent does constitute a "lower" standard than that which is usually appro- priate in today's medical practice. But the use of a "lower" standard is justified by the background as- sumption that that is what the Navajo patient prefers.

What is relative and what is nonrelative in this situation? There is a clear divergence between the Navajo belief system and that of Western science. That divergence leads to a difference in what sort of discussion is appropriate for traditional Navajos in the medical setting and that which is standard in Western medical practice. According to one descrip- tion, "always disclose the risks as well as the bene- fits of treatment to patients," the conclusion points to ethical relativism. But a more general description, one that heeds today's call for cultural awareness and sensitivity, would be: ''- w t discussion -e ' to the -fs and u- ,, -n is framed in a A heart surgeon would describe the procedures, risks, and benefits of bypass surgery in one way to a patient who is an- other physician, in a different way to a mathemati- cian ignorant of medical science, in yet another way to a skilled craftsman with an eighth grade educa- tion, and still differently to a traditional Navajo. The ethical principle is the same; the procedures differ.

OBLIGATIONS O F PHYSICIANS

The problem for physicians is how to respond when an immigrant to the United States acts according to the cultural values of her native country, values that differ widely from accepted practices in American

124 CHAPTER 2

medicine. Suppose an African immigrant asks an obstetrician to perform genital surgery on her baby girl. Or imagine that a Laotian immigrant from the Iu Mien culture brings her four-month-old baby to the pediatrician for a routine visit and the doctor dis- covers bums on the baby's stomach. The African mother seeks to comply with the tradition in her na- tive country, Somalia, where the vast majority of women have had clitoridectomies. The Iu Mien woman admits that she had used a traditional folk remedy to treat what she suspected was her infant's case of a rare folk illness.

What is the obligation of physicians in the United States when they encounter patients in such situations? A t i s the reply that in the United States, physicians are obligated to follow the ethical and cultural practices accepted here and have no obligation to comply with patients' requests that embody entirely different cultural values. At the a t h e r s the view that cultural sensitivity re- quires physicians to adhere to the traditional beliefs and practices of patients who have emigrated from other cultures.

A growing concern on the part of doctors and public health officials is the increasing number of re- quests for genital cutting and defense of the practice by immigrants to the United States and European countries. A Somalian immigrant living in Houston said he believed his Muslim faith required him to have his daughters undergo the procedure; he also stated his belief that it would preserve their virgin- ity. He was quoted as saying, "It's my responsibility. If I don't do it, I will have failed my children" (Dug- ger 1996, p. 1). Another African immigrant living in Houston sought a milder form of the cutting she had undergone for her daughter. The woman said she be- lieved it was necessary so her daughter would not run off with boys and have babies before marriage. She was disappointed that Medicaid would not cover the procedure, and planned to go to Africa to have the procedure done there. A New York City physician was asked by a father for a referral to a doctor who would do the procedure on his three- year-old daughter. When the physician told him this was not done in America, the man accused the doc- tor of not understanding what he wanted (Dugger 1996, pp. 1,9).

However, others in our multicultural society consider it a requirement of "cultural sensitivity" to accommodate in some way to such requests of African immigrants. Harborview Medical Center in Seattle sought just such a solution. A group of doc- tors agreed to consider making a ritual nick in the ' fold of skin that covers the clitoris, but without re- moving any tissue. However, the hospital later aban- doned the plan after being flooded with letters, postcards, and telephone calls in protest (Dugger 1996).

A physician who conducted research with East African women living in Seattle held the same view as the doctors who sought a culturally sensitive so- lution. In a talk she gave to my medical school de- partment, she argued that Western physicians must curb their tendency to judge cultural practices dif- ferent from their own as "rational" or "irrational." Ritual genital cutting is an "inalienable" part of some cultures, and it does a disservice to people from those cultures to view it as a human rights violation. She pointed out that in the countries where female genital mutilation (FGM) is practiced, circumcised women are "normal." Like some anthropologists who argue for a "softer" linguistic approach (Lane and Rubin- stein 1996), this researcher preferred the terminol- ogy of "circumcision" to that of "female genital mutilation."

0 0 S J n –

p a t h v – u s t adhere t w

. . enw51.e.n_lhey-nelangerkueM

that, since^ culture under- changes* OVP.T. Furthermore, to contend that in the coun- tries where FGM is practiced, circumcised women are "normal" is like saying that malaria or malnum- tion is "normal" in parts of Africa. . . . . . . . c- 1s St . . W w w

the . . or the betterment of