Research on terminal illness and how to care for dying patients is a vitally important issue. Unfortunately, not much research is done, in part because the review boards that approve research projects often balk at asking these vulnerable patients questions on sensitive topics. Even simple interviews about the patients' feelings are often out of the question. Researchers from the National Institutes of Health were frustrated by being told they could not do research with terminally ill patients. They talked to a group of patients facing death to see if interviews about their condition stressed them out as much as the review boards said it did.

What the researchers wanted to know: Does talking with terminally ill patients cause them stress or help them?

What they did: The researchers interviewed 988 terminally ill patients and 893 of their caregivers about their illness, support system, quality of care, needs for care, economic burdens, the spiritual and personal meaning of dying, and their opinion on physician-assisted suicide. At the end of the survey, they asked them how much stress the interview caused and whether or not they thought the interview was helpful.

What they found: In the first interview, fewer than 2 percent of the patients in this survey found the interviews extremely stressful, and 89 percent said the interview was not stressful at all. Caregivers were not stressed by the interview, either; 1.5 percent said it caused a great deal of stress, and 90 percent said it caused no stress at all. Seventeen percent of the patients and 19 percent of caregivers said the interview was helpful, while about half in both groups thought the interviews helped very little or not at all. Patients were more likely to find the interview stressful if they were experiencing pain, felt less personal meaning at the end of their life, or if they did not feel comfortable talking about the end of life. Patients who were from ethnic minorities, were more spiritual, were more serene, or were anxious about the end of life were more likely to say they thought the interview was helpful.

What it means to you: For the researchers, this study helps them make the case that patients who have terminal illnesses can be studied without fear of causing them stress. For family or friends of people who are facing the end of their life, this study suggests that talking about death is not likely to upset patients and could help them as long as the topic is handled with sensitivity. Even though the researchers just studied the effect of a structured interview, and not an open dialogue, it shows that people who are close to terminal patients need not shy away from the topic of death to save the hurt of their loved ones.

Caveats: The study might have underestimated the number of patients who might have felt stressed by the interview because those patients could have been more likely to refuse to participate in the study. Out of the 1,131 eligible patients, 119 did not want to be included.

Find out more: The National Hospice and Palliative Care Organization is a trove of information about end-of-life care and includes a locator for hospice centers around the United States.

The End-of-Life Nursing Education Consortium, a group that promotes education and training for nurses who care for terminally ill patients, has a list of articles written by experts on their website.

Read the article: Emanuel, E.J. et al. "Talking With Terminally Ill Patients and Their Caregivers About Death, Dying, and Bereavement." Archives of Internal Medicine. Oct. 11, 2004, Vol. 164, No. 18, pp. 1999–2004.

Abstract online: http://archinte.ama-assn.org