Beverly Tyler, Executive Director of Georgia Health Decisions, says the study was done to get more in-depth information about Americans' opinions regarding health care at the end of life. Funded by a grant from the Robert Wood Johnson Foundation, the study included focus groups with 385 Americans from 32 different cities as well as follow-up interviews with 29 people who are terminally ill and 20 people who had recently gone through the death of a loved one. Focus groups seemed an ideal setting in which to alleviate the hesitation that many subjects might have had about the topic. "People tend to reveal a great deal more when they are in a comfortable setting with their peers." said Tyler.
In addition to the focus groups, 65 people randomly selected from the focus groups were interviewed individually to explore how their participation in the groups had affected their planning for their end-of-life care.
Not surprisingly, the study found that the majority of Americans are very reluctant to even begin to discuss some of the health decisions they might face at the end of life. In focus groups, people said they "no longer feel close to their doctors" and complain of "being rushed through appointments." In follow-up interviews, however, participants said that as a result of the focus groups, they would now feel comfortable in discussing end-of-life issues with their doctors.
The study found few demographic differences in the opinions of most of the participants in the study. Most people share a common desire to die at home, in comfort, and surrounded by loved ones.
Felicia Cohn, Ph.D., an ethicist with the Center to Improve Care for the Dying, notes that people often make decisions that they will reverse when faced with the actual prospect of dying. "What we have found is that once the terminally ill patient has received his medications and is released to go home to die, there is a loss of confidence in the decision and more medical treatment is sought," observes Cohn.
Cohn observes that patients in the last phase of life are often very adaptable to changes they must make. She cites as an example a person who loses his sight but to compensate develops a taste for classical music. If a patient is asked prior to a loss if a certain change will be acceptable, he will frequently say no. But once the loss of some capacity has occurred, the patient will adapt his lifestyle to accommodate the situation.
The differences between the different demographic groups in the study, which included African Americans, Hispanics, Native Americans, Asian Americans, and whites, are slight. African Americans and Native Americans are most reluctant to support physician-assisted suicide or rely on age as a factor in making treatment decisions. White and Asian participants have greater confidence in the health care system. African Americans have a greater ability to adapt to a lesser quality of life if it means saving their lives.
These findings are encouraging, says Tyler, for those hoping to educate the public on end-of-life issues. Most public health education materials have to target very specific demographic groups, requiring the development of many different publications and materials. However, the similarities in public opinion about death and dying permits the use of similar materials for patients of different ethnic and religious backgrounds. In addition, the similarities across ethnic groups leads to the possibility for a public dialogue on how most Americans want to be cared for when they die.
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