Jan 6, 2011

Nearly two-thirds of nursing home patients have advance directives, documents allowing people to make end of life decisions when they might not be able to speak for themselves, a government study shows.

But the study, out today, reveals a significant gap between black and white patients with the documents.

The National Center for Health Statistics looked at three groups of long-term care patients and found that 65% of those in nursing homes had advance directives such as living wills and do-not-resuscitate orders, as did 88% in hospice settings and 28% in home health care.

"We've been encouraging this type of activity for a long time," says Howard Brody, director of the Institute for Medical Humanities at the University of Texas. "It is voluntary. It is an option. It is not the government death panels doing this. It is really about getting people better quality of care at the end of life."

Twenty years ago, Congress passed the Patient Self Determination Act requiring health care providers to inform adults about their rights to manage their own care by executing advance directives. Some experts also view them as a way to trim soaring health care costs. A quarter of Medicare costs are spent on 5% of patients in the last year of life.

A 2007 study prepared for the Department of Health and Human Services estimated 5% to 15% of adults in the overall population have directives, compared with 48% of nursing home residents.

The new study, based on data from the 2004 National Nursing Home Survey and 2007 National Home and Hospice Survey, found blacks were less likely than whites to have an advance directive in all three groups. They were only half as likely in home health care and nursing homes.

"In a large part, it's because of the discrimination African-Americans have faced from the medical profession in the past," says health and long-term care expert William McAuley, a professor at George Mason University. "It's understandable that they're fearful of these measures. They wonder, would a doctor take extra measures to save a white person?"

Receiving hospice care seems to be a "leveler" for blacks, says Lauren Harris-Kojetin, one of the study's authors. In hospice care, 80% of blacks and 89% of whites have directives.

"It also means many African-Americans needlessly suffer when they don't have directives and they have no chance of survival," says McAuley. "Cardiac rescusitation is a very difficult thing to go through."

People under age 65 were less likely to have directives than those 85 and older. In nursing homes and home health care, those 85 and over were more than twice as likely as those under 65 to have directives. However, in the hospice setting, 81% of people under age 65 had directives compared with 93% of those over age 85.

"What we're really talking about is people being realistic about what way they'd like to approach dying and what they want family members and doctors to know about the kind of care they want when the time comes," says Brody. "Options and choices about the end of life are associated with so many benefits. This is something you should take very seriously."

About 80% of deaths occur in hospitals or nursing homes, "often in the context of aggressive high-technology treatment," even though most patients said they'd rather die at home, according to the Department of Health and Human Services report.

Brody says directives allow "doctors to tailor care to the patient's preferences and the family is much more comfortable with the way their loved one dies."

The focus of directives is on "people being able to think ahead," he says.



  1. As the nation's largest provider of advance directives (Five Wishes, with more than 15 million copies in national circulation), please allow this observation. People of all colors and ethnicities are naturally reluctant to discuss matters of aging, death and dying. Who isn't? We have found that people will discuss the subject and complete an advance directive if it is framed in terms people want to talk about. Most advance directives are written by doctors and lawyers and deal only with medical and legal matters. However, when the topics are comfort, preserving dignity, family forgiveness, etc., people will and do talk. Learn more about Five Wishes at www.agingwithdignity.org. Keep up your great work! -- Paul Malley, President, Aging with Dignity, a national non-profit organization.

  2. This is very informative. Thank you for sharing this.
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  3. It isn't that hard to sign a living will document. This helps the patient's family to give them proper burial in case they die.

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