A little knowledge can be a dangerous thing, she noted "because it feeds into the natural tendency to stereotype - and then you can’t be there for the individual, because you’re relating to a two-dimensional caricature of that individual. We don’t really know the essence of that patient unless we’ve spent a long time and concerted effort to learn."
Kagawa-Singer is a nurse and anthropologist who has extensively studied and taught on the importance of cross- cultural issues for health care professionals. Her experience with dying cancer patients who described themselves as "healthy" started her on a journey to study different models of healing, other than the dominant Western, biomedical model. She shared her insights in a keynote presentation, "Dying Healthy: Lessons Learned from the East and West," at last fall’s Mansfield Conference, "The Healing Arts in American and Asian Cultures: A Conference on Living and Dying Well," held in Missoula, MT, as well as in a subsequent interview with ABCD Exchange (see Exchange, January 1999). The conference presented a variety of perspectives on healing, from Western to Chinese, but also included a major component on end-of-life issues.
The landmark 1997 American Health Decisions study, "The Quest to Die With Dignity," concluded based on extensive focus group data that Americans of different cultures and generations share the same basic fear of dying in the clutches of America’s high-technology health care system. Another speaker at the Mansfield conference, Lobsang Rapgay, Ph.D., a Tibetan Buddhist monk and psychologist who works with dying patients at UCLA Hospital, also noted that death and the fear of it are universal, existential experiences that cut across cultures.
Kagawa-Singer agreed, but added, "The ways people have devised to divine meaning from that experience and construct it in a way that is satisfying to their souls are very different - and are characteristic of a group of people." She compared culture to photographic lenses in the way that different lenses can create different kinds of images, and a polarizing lens can be turned in such a way that you can no longer see through it.
"Anyone in any culture is given certain lenses to look through, that allow them to perceive a world in a certain way. When you start mixing lenses, sometimes they don’t work very well," she explained. "When you start trying to intervene with someone in a cultural mold that’s different than what they’re used to, at the point in their lives when they’re dying, that is not the time for them to start a whole re-education process. If we can use a framework that is more familiar to them, it facilitates our ability to be supportive."
She explained. "Yes, they may go through major life transformations - and they can die peacefully and beautifully. But we need to use the symbols and the words that are nurturing to them. And it’s our responsibility to know what those are - and not expect our patients to teach us at that point in time. We can also be open to individual interpretations of culture - but it helps if we already know something of that culture beforehand."
Another recent illustration of the crucial role for cultural differences at the end of life lies in research about advance directives. Different cultural groups vary considerably in the rate at which they complete advance directives, and in some cases these differences have deep cultural roots, observed Vicki Michel of the Loyola School of Law in Los Angeles at the recent Robert Wood Johnson Foundation Last Acts regional meeting in Newport Beach, CA.
For Korean-Americans, family decision-making may be more highly valued than the individual’s expression of treatment preferences, while for African-Americans - with the notorious Tuskegee syphilis study still a fresh memory - there is a widespread mistrust of the health care system. As a result, they may be reluctant to sign any confusing legal form that they fear might sign away their rights. Differences such as these, Michel said, raise fundamental questions about current efforts to promote advance directives, and whether there might be other, more effective ways to achieve the same results.
Kagawa-Singer agreed, adding that the use of advance directives often doesn’t translate well across cultures, "especially where the family - not the individual - is the smallest unit of care," and where views of autonomy and self-determination are seen through a more socio-centric, rather than egocentric cultural lens.
Culturally sensitive end-of-life care needs to pay attention to non-verbal communication, Kagawa-Singer said. It should recognize the alienation routinely imposed on the dying patient and his or her family by the hospital experience, the wide range of appropriate, culturally derived grief responses--even the ongoing role for the dead in the life of the community.
"The way I usually present the issue to extremely busy practitioners is this: How many of you have had a problem or a situation where you thought you weren’t connecting with someone from a culture other than your own? Most everybody raises their hand. I say: Did you feel satisfied with that interaction? Usually not. How do we make it better--are you willing to put in that effort?" she related.
"It’s not going to happen easily, it’s not business as usual. And that’s where they usually have some resistance--they don’t have time. I say: I can make you do your job better, more efficiently, and with greater satisfaction. But you are going to have to put in some time up front," she said. "We’re willing to devote years to learning the technology and how to handle it. Why wouldn’t we be willing to spend a few months learning about how to care for the soul of that person who happens to have this disease?" she posed. "You can’t just learn a few steps or a checklist. You can’t change a person’s way of seeing the world in one hour." But every community has resources to help, including the civic and religious leaders of local ethnic communities, and nearby universities. "There are lots of us around who can do these workshops--but it has to be done on multiple levels, and there has to be administrative buy-in that this is important," she said.
"The will to live is biologic, but the search for meaning to life is human--and every culture helps to provides that kind of meaning.... Learning about a culture and its world view can help us to accept the inevitability of dying--but with that also comes instruction on how to live," Kagawa-Singer said.
"In all models of healing other than the western biomedical model, the practitioner is curer and healer, and medicine is not divorced from spirituality. We need to bring the two back together--our health care system does not address the spiritual or metaphysical. Other cultures do," she explained. "We also need to recognize that these problems are too big for us to be so naive as to think there’s only one right answer. Most cultures have been around for several millennia, so they’ve probably figured out good ways to solve certain common problems. At this point in the evolution of globalization, there are multiple right ways to do things--and that should be exciting. We can be much more selective as providers, because we have a planet of options to learn from."
Larry Beresford, a San Francisco-based writer, frequently covers end-of-life issues. He is a senior writer for the National Hospice Organization.
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