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by Margaret R. McLean and Margaret A. Graham
Imagine yourself seated at a table in the local parish hall. The topic of tonight's meeting is the ending of life. When the conversation turns to what is most troubling about dying, you nod your head as you hear:
Eyes turn to you. What do you say? Will your response to these universal worries be colored by your culture?
While end-of-life decision making is difficult for everyone, it can be particularly problematic for underserved populations who face a multitude of cultural and economic barriers within the world of American health care. We invited several groups of Latinos in San Jose, California, to engage in a discussion of these concerns.
The study End-of-life Issues Personally and Spiritually Explored (ELIPSE) was initiated in response to the observation by local medical professionals and social service agencies that Latino communities are on the periphery of health care decision making. Although Latinos comprise a third of California's population, only 4 percent of the state's physicians are Latino-and many of them do not speak Spanish.
This results in a Latino population to physician ratio of 2,893:1. In other words, few physicians can serve as culture brokers for their Latino patients.
To assist in the goal of improving the Latino health care experience in the San Jose community, 66 adults agreed to participate in a series of three focus group sessions that explored their attitudes and concerns regarding end-of-life care. In this article, we present their views of death and dying, their interactions with the health care system, and their concerns about discussing these issues with their families.
Focus Group Participants and Methods
Focus group sessions convened at a Catholic parish in East San Jose, a community youth center, a human service agency, and Santa Clara University. The discussion was guided by the Spanish version of Talking It Over: A Guide for Group Discussions on End-of-Life Decisions, developed by Sacramento Healthcare Decisions and distributed by the California Coalition for Compassionate Care.
Each focus group met on three occasions (for about 1.5 hours each) to explore personal views on dying and to identify important considerations in end-of-life care for patients themselves and for their loved ones. Focus group facilitators and recorders came from within the Latino community, easing concerns about "outsiders studying us."
The format included guided discussion interspersed with supportive prayer in response to difficult content, emotional needs, and the sacredness of the conversation. Discussions were recorded by hand and on audiotape. Manual notes (relying on tapes to fill in gaps) were translated from Spanish to English.
As with any focus group research, the findings are based on participant perceptions and responses. Transcripts were analyzed thematically; that is, reading through them looking for themesideas, concepts, and responses that are repeated.
Sixty-six adults, most of whom were between 20 and 40 years of age, participated in the focus group sessions, which took place between November 2000 and July 2001. The majority-82 percent-were women although each group included both men and women. Most (77 percent) of the participants were born in Mexico and most (71 percent) spoke only Spanish. Eighty-three percent identified themselves as Catholics who are involved in religious activities.
Views of Death and Dying
The participants' comments about death revealed a variety of attitudes ranging from fear to acceptance. Most (89 percent) of these adults had experienced the death and/or serious illness of someone they knew well such as a parent, child, sibling, or friend. Death was real, not an abstraction. Overall, most people expressed an attitude of "reluctant realism"death is generally recognized as a natural, albeit unwelcome, part of life.
Their primary fears centered on the process of dying and the potential impact of their death on family members, especially children. The participants expressed a concern that is widespread in the United States today: People fear the dying process more than death itself.
Participants spoke about their desire for a "natural" death that would include some kinds of medical intervention (e.g., CPR and "shocks") but exclude others ("machines" and "tubes"). There was a desire for medical intervention but only to a certain point. Some participants stated that it is hard to know when "enough is enough."
People spoke about the difference between "theoretical"
cases like those described in the written materials and what
happens in real life when emotions are running high and the
lines between intervention and nonintervention are not so clear
cut. In this, their views were not unique. There is nothing
simple or easy about holding a loved one's life in your hands.
Although 55 percent of participants said they felt comfortable talking with their doctor about end-of-life issues, they complained about the kind and level of communication they have had with physicians. They look to their doctors for compassion, advice, guidance, and treatment but find that most doctors lack the time, sensitivity, and warmth that would facilitate open communication. It was clear that people desire a professional and personal relationship with health care providers although they do not always experience it.
One barrier to open communication is the lack of Latino and Spanish-speaking doctors. Many participants said that having doctors who understand both their language and culture would make a big difference in their medical interactions. They described effective communication as more than just accuracy in translation. Good communication involves a deeper understanding of cultural values such as the importance of strong family bonds.
Strong family ties underlie a clear preference for hearing bad medical news from a family member and not from physicians or nurses. Over 75 percent of the participants wanted the physician to discuss their diagnosis with a family member and, notably, not with them.
This suggests that physicians and other health care professionals need to develop an appropriate communication pattern with the Latino patient and family early on. Just asking the simple questionWho do you want me to talk to about your test results, your diagnosis?would respect patient autonomy and the centrality of family, while not overwhelming the ill person with unwanted information, which may be met with resentment.
The Best Time to Talk It Over Is Not When You Have to
Although death is not considered a taboo subject within the Latino community, there is a reluctance to talk about it. As the sessions progressed, however, the participants became more comfortable. They sought out more information and opportunities to talk with their family members.
Many attempted to speak with family members and friends about the sessions, often with little or no success. This suggests that there is a need within the community for opportunities for conversation and sharing of information about life's ending.
These life and death conversations require a degree of trust that comes from having a relationship with others in the discussion group. Most of the participants in each group knew each other, which allowed for a sense of security and understanding in talking about such personal concerns.
Lessons From the Latino Community
In facilitating these conversations, our aim was to explore the end-of-life experiences of some Latinos within the San Jose community. Their experience is, of course, not necessarily universal. However, we believe that this project provides a base on which to build opportunities for better engagement with the local Latino community about end-of-life care.
Among the lessons we learned from Latinos in our community about end-of-life decision making are:
The ELIPSE project was supported by a grant from Catholic Healthcare West and administered by the Catholic Community Initiative of Santa Clara County. Project Director Margaret R. McLean is the director of biotechnology and health care ethics at the Markkula Center for Applied Ethics. Margaret A. Graham, project consultant, is assistant professor of anthropology at Santa Clara University. The authors would like to acknowledge the participation of O'Connor Hospital, St. Louise Regional Medical Center, the Diocese of San Jose, Catholic Charities of San Jose, and Santa Clara University. Special appreciation is extended to members of the ELIPSE Steering Committee and to Julia Arce, Kristen Koenkamp, Nikole DuTemple Nichols, Talia Smith, and Yvonne Talavera.
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