Older African Americans are less likely to have a plan for their end-of-life care than their white counterparts, a discrepancy that leaves blacks with less control over their final health care choices.
In the first national analysis of racial discrepancies in end-of-life planning, the National Center for Health Statistics reported Jan. 6 that African Americans in home health care and nursing homes were half as likely as whites to have an advance directive such as a living will or a do-not-resuscitate (DNR) order.
Experts say this disparity means African Americans are more likely to endure unwanted medical procedures and experience unnecessary pain and family strife.
"When people don't have advance directives, they are more vulnerable to having decisions made that do not allow for a dignified death," says Etienne Phipps, director of the Center for Urban Health Policy and Research at the Albert Einstein Healthcare Network in Philadelphia. It's also very difficult for families to take on the burden of making decisions at the end of life, says Phipps.
She adds, "It's a lot easier if they feel that the direction of care reflects what the patient wanted."
The Patient Self-Determination Act, passed 21 years ago, requires most health care facilities to talk with patients about their right to come up with an end-of-life plan. That can include discussion of what treatments a patient would want or not want as a way of ensuring that a person's wishes are fulfilled even when they can no longer communicate them.
In all, the report found that 28 percent of home health care patients and 65 percent of nursing home patients had at least one advance directive in place. When race is considered, only 13 percent of blacks in home health care have a plan in place, compared with 32 percent of whites. In the nursing home setting, 35 percent of African Americans have a plan compared with 70 percent of whites.
Experts cite entrenched reasons
Several factors play into the reason African Americans are less likely to have advance directives, according to Sharon Williams, research scientist at the University of North Carolina Center on Aging and Diversity. The formal nature of advance planning — a living will you have to sign, or an ominous sounding do-not-resuscitate document — ignite entrenched fears that doctors won't do everything possible to save a person's life. It also puts into question a person's religious faith, says Williams.
"There's a thought that if we accept the possibility that we're going to die from an illness, then our faith isn't strong enough," says Williams. "People think, 'I have to hold on to my faith. There's no room for me to plan for dying. That's giving up.' "
For advance planning to be successful in the African American community, Williams suggests doctors bring the patient's family into the discussion and encourage the use of medical powers of attorney, which give control over decision making to a loved one, instead of indiscriminately ruling out certain medical procedures. The National Center for Health Statistics study found that living wills and DNR orders are the most commonly used advance directives.
Further, physicians need to be aware of the strong role religion plays in the lives of many African Americans.
"We should respect and acknowledge a person's right to hold out for a miracle," Williams says. "Doctors need to incorporate that possibility into the discussion, but also explain that planning is important in case the miracle isn't the outcome."
Cynthia Ramnarace writes about families and health from Rockaway Beach, N.Y.