There are many decisions to make about end-of-life care-care during the last months, weeks, or days of someone's life. Adults and their loved ones may need to decide, for example, whether to begin or continue aggressive medical treatment that may cause side-effects, or whether to allow the use of life support measures or equipment, such as tube feeding or respirators. They may also need to decide whether to use a nursing home or hospice (programs designed to reduce pain but not necessarily to extend life). Or they may need to decide whether and how often to use pain-relieving drugs that may cause intense sleepiness or confusion. Some research has found that the kind of end-of-life care people prefer, or want, differs from one racial group to another, and between men and women even in the same racial group.

New Research in the Journal of the American Geriatrics Society

To take a closer look at how preferences concerning end-of-life care differ among racial groups and between men and women, researchers asked 73 adults from five different racial/ ethnic groups about end-of-life care. About half were men, the other half, women. There were roughly equal numbers of Arab Muslims, Arab Christians, Hispanics, Blacks, and Whites. All spoke English and all over 50 years old.

The adults were divided into 10 "focus groups," one each for men and women in each of the five groups. Each focus group met with a professional discussion leader and discussed end-of-life options and preferences. Among other things, they discussed such things as advance directives. Advance directives are written documents in which you specify, while you're still able to make your wishes known, what kind of care you want, including end-of-life care. They also discussed physician-assisted suicide in which a doctor aids a dying person, who is often in pain and /or suffering, end his or her life with the help of drugs. The discussion leader also asked the adults in each group if they thought that different racial groups, or one sex or the other, was discriminated against, and received different treatment, at the end of life.

The adults in the study also filled out questionnaires which asked about their religious beliefs and preferences concerning end-of-life care. The researchers found that end-of-life care preferences differed considerably between men and women and among racial groups. Here are some of their findings:

• Both Arabs and Hispanics said that avoiding a nursing home was crucial.
• Blacks were least opposed to nursing homes.
• Whites were open to using nursing homes and hospice at the end of life, but many said they would rather die at home. For Whites, it was important to have care options and to have advance directives.
• Hispanic and Black men said they would not want life-prolonging treatment such as feeding tubes or respirators and they approved of physician-assisted suicide.
• But Hispanic and Black women were against assisted suicide and in favor of extending or prolonging life. Hispanic women, however, were opposed to using feeding tubes to prolong life.
• Arabs were opposed to assisted suicide. They also felt that life should not be prolonged with such things as feeding tubes or respirators. Very religious Arabs felt very strongly about this.
• Most Hispanics and Arabs were unfamiliar with hospice care.
• Blacks noted that African-Americans had faced discrimination when seeking care in the past, and black women said they thought care givers still discriminated against black men with AIDS.
• White men said that, in emergency rooms, physicians treat younger patients before caring for older adults. And White women said that health care providers abandon people at the time of death.

There were some limits to the study. All of the adults in the study spoke English, and it's possible that non-English speaking adults might have different thoughts about end-of-life care. In addition, the study did not include other racial or ethnic groups, such as Asians or Native Americans. Also, the sample size was small.

In light of their findings, the researchers conclude, health care providers should consider racial and gender differences when working with people facing end of care decisions. Because men and women may disagree about various aspects of end-of-life care, healthcare professionals should encourage husbands and wives to talk about their preferences while they are both healthy. Health care professionals should also try to help adults, especially Arab and Hispanic adults, learn more about hospice. And because religious beliefs affect preferences care professionals should remember to refer religious patients who have to make end-of-life decisions to clergy.

What Should I Do?

Talk to your family and friends and your healthcare provider about your wishes at the end of life. It may be good idea to write an advance directive, spelling out what kind of care, including end-of-life care, you would like. If you or a loved one is ill and may be nearing the end of life, be sure that you understand how various treatment options will affect you or that loved one. Ask your healthcare professional questions, including: Will the treatment cause side effects? Will this treatment simply lengthen life, without improving the quality of life? What other choices do we have? What's the best way to relieve pain without causing drowsiness or other side effects? Try to ask these questions as early as possible, when you or your loved one is best able to make decisions.

For more information about end-of-life care and choices-including information about advance directives, life-prolonging treatments, tube feeding, and physician- assisted suicide-visit: http://www.healthinaging.org/agingintheknow/chapters_ch_trial.asp?ch=4.

The summary above is from the full report titled, "Racial/Ethnic Preferences, Gender Preferences and Perceived Discrimination Related to End-of-Life Care." It is in the January 2006 issue of the Journal of the American Geriatrics Society (Volume 54, Issue 1). The report is authored by Sonia A. Duffy, PhD, RN, Frances C. Jackson, PhD, RN, Stephanie M. Schim, PhD, RN, David L. Ronis, PhD, Karen E. Fowler, MPH.