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Autonomy, Justice, and Gabriela Rivera's Need for CareBy Karen Peterson-Iyer
Nowhere is the need for culturally competent health care more apparent, or more poignant, than when a patient and his or her family confront the possibility of death in a medical setting. The experiences of illness, death, and dying are profoundly shaped by one's particular cultural and religious beliefs and practices, in addition to other aspects of one's social location. Added to the mix is the particular medical "culture" espoused by most American hospitals and other medical institutions; this culture can involve certain assumptions about illness or about end-of-life decision making that may not mesh well with the hopes, values, and expectations of patients from non-majority cultures. Further, such cultural gaps may not be readily apparent in the case of patients like Gabriela Rivera, who herself bridges more than one culture, bringing to her experience sensibilities formed by her traditional Puerto Rican birthplace but also by nearly forty years lived in the continental United States.
Gabriela - like any patient in any medical setting-is a complicated, historically bound, culturally-located individual. She is who she is not only because of her personal hopes and choices, but also because of her family, her language, her traditions, and her cultural practices. The medical team is understandably concerned with identifying, in the moment, whether or not Gabriela has adequate decision-making capacity, and, once it has decided that she does not, turns instead to the individual (Marcos) who can adequately make decisions for Gabriela. Moreover, the team's unspoken goals in treating Gabriela seem to include a return to independent living and self-care, both of which seem highly unlikely in her particular case. These health care providers are well meaning and certainly seem to want the best care for Gabriela. But they are caught up in a system that has essentially isolated Gabriela's medical crisis from her personal history as well as from her cultural reliance on extended family for her identity and support. In ethical terms, Gabriela's autonomy (or, alternatively, her lack of autonomous decision making capacity) has been at least partially severed from the broader context of her historicity and her relationality. If her care is to be more "culturally competent," it must pay more attention to the cultural, linguistic, and historical details-in other words, the relational details - of Gabriela's life.
The clearest nuance of Gabriela's particular case-and one which is widely shared among patients of Latino heritage-is the prominence of family and home life in Gabriela's value system. For many-perhaps most-patients, familial relationships have a profound impact on personal values. This is especially true for patients from cultures where family ties are traditionally closely linked with personal identity, as is the case with Gabriela Rivera. The case as written reveals to us that Gabriela is a "devoted mother," maintaining close ties with her children even into their adulthood and with a strong emotional connection to the apartment in which she raised them. She is financially and, we can assume, emotionally and perhaps even physically reliant on her family, sending homemade sweets to her children and spending every afternoon with her teenage granddaughter. In many Latin American cultures, such devotion to family ("familismo") is a strong and influential force; family often takes precedence over work and other aspects of daily life, and individuals gain significant strength from these family bonds.
Because of the apparent centrality of family in Gabriela's world, it is reasonable to assume (as the doctors do) that Marcos, her most present family member, should be a central decision maker in her care. Marcos' beliefs and opinions would indeed be very important to Gabriela. Marcos, however, is not Gabriela's only child, and he is not her eldest child; she has six adult children, three of whom reside in New York itself. The case makes no mention of any attempt by the hospital to acknowledge this extended family or to ask Marcos if he would like to arrange a family meeting regarding the decisions surrounding Gabriela's care. As Dr. Marc Tunzi points out in his commentary on this same case, Marcos himself may well benefit from the chance to attempt consensus with his brothers and sisters about his mother's condition, or at least from the opportunity to include them in conversations with the medical team. This is particularly true since Marcos himself suffers from untreated diabetes, surely clouding the issues for him and likely making heavier the burden of decision making about his diabetic mother.
Taking Gabriela's relationality seriously would mean taking seriously the significance of her family bonds, setting up more formal conversations with her entire family and trying better to understand Gabriela's own values through such conversations. This of course requires a communication style whose goal is not simply to secure quickly the informed consent of the patient or the individual surrogate. Even if a single surrogate must be designated, it should not be assumed that the surrogate operates in a relational vacuum. Instead of sticking to the rather individualistic approach of consulting simply and solely with Marcos, the hospital would do well to suggest and arrange family meetings among Gabriela's children and perhaps siblings, if they are available. To do this would be to take more seriously Gabriela's (and Marcos') familial connectedness.
Hand-in-hand with opening up to a more relational approach to decision-making, Gabriela's caregivers should be challenged to identify the cultural assumptions with which they approach her long-term prognosis. They are understandably pessimistic in their assessment that Gabriela will no longer enjoy the semi-independent quality of life that she previously did. Her situation will likely change dramatically, and she will be far more dependent on others than she had been up to that point. Yet one cannot help but wonder whether Gabriela herself would receive the news about this new, higher level of dependence as negatively as the doctors assume that she would. Hers is a close-knit family; and it seems clear that Marcos and his family (and very likely at least some of her other children) would be willing to try to provide a fairly high level of care to their declining mother. In other words, the elusive goal of independence for Gabriela might in fact be less important to her and to her family than the doctors assume. We in the American health care system must remain alert to the fact that all patients and all cultures may not share the heavy emphasis Western medicine has tended to place on the treatment goal of independent living. Marcos, at least, appears to interpret the discontinuation of curative treatment as tantamount to abandoning his mother.
What would be helpful here is a renewed commitment to listen carefully to Gabriela's family, making a special effort to understand their own treatment goals, given their mother's particular personality and situation. The calculation of the relative burden and benefit of treatment options is always patient-specific, and thus this calculation must take into account the patient's (and family's) personal and cultural value system(s). Perhaps a priest or other religious leader could have helped the family to think through and communicate their options, especially since the family appears to hold strong religious views. Again, ethically understood, this is a matter of situating Gabriela's autonomy in the context of her particularity-including her culture, her history, her relationships.
Setting up and facilitating such culturally nuanced conversations will require not only time and energy by the hospital staff; it will also require the presence of a bilingual medical interpreter who can ensure that the family fully understands the options and is able accurately to communicate its wishes. There is no obvious language barrier in this case, since Marcos does speak English. But Marcos may be perceived as having inferior English skills, due to his heavy accent; and the fact that Dr. Johnson initially addressed Marcos and his 15-year-old daughter "equally" in conversation very likely felt inappropriate and perhaps patronizing to Marcos himself. Further, given the technical medical jargon that accompanies many such cases, the doctors and nurses may assume that there is complete understanding even when there may not be. For instance, the word "hospice" does not translate easily into Spanish with a similar meaning; the Spanish word "hospicio" in fact translates directly as "orphanage." This translational nuance may add to Marcos' anxiety that the medical team's suggestions are tantamount to abandoning his mother. A medical interpreter at the hospital, preferably one who is familiar with Puerto Rican culture, would help to overcome these obstacles. Similarly, earlier in Gabriela's care, the intervention and guidance of a Puerto Rican dietician and/or nurse could have made an enormous difference in helping Gabriela integrate her doctor's medical recommendations into her overall lifestyle.
Making the changes suggested above would surely increase the level of cultural competence with which the hospital staff approached Gabriela's care. But it is also helpful to think more broadly about Gabriela's situation using the ethical language and framework of justice. Indeed, one way of thinking more generally about cultural competence is as a subset of the moral category of justice. Justice is a sticky concept in Western thought; it has been conceived and reconceived in various ways, including reference to fairness, equal treatment, and desert. Traditionally, formal "justice" requires us to ensure that each person receives his or her "due." But (as with so many policy questions), the devil is in the details. What exactly is any particular person "due" in any given situation?
Ethicist Margaret Farley has insisted that justice be conceived first and foremost in terms of honoring a person's concrete reality. That includes not only respecting a person's autonomy but also her embodied historicity, including her family and cultural ties. In other words, rather than focusing on a person as, at root, a detached individual, we should understand her as both autonomous and relational, with her own freedom and loves, but also deeply formed by (though not wholly identified with) her connectedness to other persons and communities. To treat a person justly is to treat her not simply as a full and complete individual like other individuals, but also as a person formed to the core by cultural, familial, and other historical bonds and particularities.
Has Gabriela's care in this case been just? If justice is conceived in a more narrow, ahistorical and individualistic manner, the question is simply whether Gabriela has received fair treatment in the hospital - in other words, treatment that is the same or similar to the treatment others would receive in her situation. And here there are indeed some valid questions for us to ask. For instance, did the doctors rush too quickly to dire conclusions and thus also to less aggressive medical treatment, simply because Gabriela was Latina? Some studies have suggested that this kind of differential race-based treatment does go on in American health care. There is no question that such racially differentiated treatment represents a gross violation of justice as it is commonly understood. We cannot know for sure whether the doctors would have made different suggestions in this case if Gabriela were from a white, non-hispanic background, but the possibility should trouble us.
But, using the more relationally defined understanding of justice indicated above, further questions arise about Gabriela's treatment. Did Gabriela's treatment attend to the particular needs of her concrete reality-her historical and cultural circumstances? For instance, take the fact of Gabriela's relative poverty. Did it lead, in the end, to substandard care? There is no question that greater financial resources earlier in her disease process would have allowed Gabriela to obtain better medical care, with more consistent access to her medication and better follow-up attention, - perhaps preventing the entire event altogether. Reading between the lines, it seems likely that Gabriela lacked a consistent provider, one familiar with Puerto Rican diet and culture, with whom she could build up a sense of trust and who could regularly follow up on her diabetes and overall medical situation. This kind of trust relationship would have proven indispensable when it came time for Gabriela's family to have the difficult conversations related to the medical decisions she now faces.
Standing out in the case of Gabriela Rivera is the fact that her individual caregivers were competent and well-meaning, and it appears that they attempted to provide her with their best recommendations, given the constraints placed upon them and the standard assumptions of a U.S. clinical medical setting. Yet it nevertheless seems that Gabriela's medical care could have indeed been more culturally competent, or, otherwise put, more just. Greater and more sustained attention to the nuances of Gabriela's culture; a willingness on the part of the caregivers to challenge their own culturally-based assumptions and values; and an ethical framework which makes a larger place for attending to the needs of cultural and historical particularity: these all would have helped to bridge the cultural gap between Gabriela (and her family) and her caregivers. Caught up as we are in a medical system heavily in need of cost-cutting yet simultaneously focused on acute (vs. preventive) care, it will not be easy to implement changes such as these. Yet in a country as culturally and ethnically diverse as the United States is today, justice, broadly understood, demands that we try.
Karen Peterson-Iyer is a program specialist in health care ethics at the Markkula Center for Applied Ethics.