At the End of Life, a Racial Divide
Monday, March 12, 2007
In her last days, Marjorie Clarke Driver longed for a quiet bath in her own tub. But she never made it home.
Instead, Driver, 88, died in a hospital, attached to tubes and monitors, after doctors worked furiously for 30 minutes to revive her, even though her heart and lungs were too far gone to respond.
"I really wanted to try to get her home," said Driver's daughter, Christina Clarke of Poolesville. "She never got her bath, and that really troubled me."
To die peacefully in the comfort of her Silver Spring apartment, however, Driver would have had to accept that there was no hope of recovering, refused further treatment and trusted that hospice care was best. But Driver, who was black, would have none of that.
"My mother did not want to die," said Clarke, 68, who works for the Montgomery County executive. "We could not use the word 'hospice.' That was taboo. That meant giving up. She wouldn't hear of it."
After lives in which they often struggle to get medical care, African Americans and other minorities are more likely than whites to want, and get, more aggressive care as death nears and are less likely to use hospice and palliative-care services to ease their suffering, according to a large body of research and leading experts.
As a result, they are more likely to experience more medicalized deaths, dying more frequently in the hospital, in pain, on ventilators and with feeding tubes -- often after being resuscitated or getting extra rounds of chemotherapy, dialysis or other care, studies show.
"I think we need to be very attentive to attending to suffering in our patients and do everything we can to help minimize and ameliorate it," said Richard Payne, who runs Duke University's Institute on Care at the End of Life. "African Americans and other minorities are at greater risk of not dying well."
To be sure, not all minorities -- or even necessarily most -- have this tendency, nor is it exclusive to minorities. Americans of all races use hospice services and prepare living wills less frequently than experts say they could. And many minorities do take advantage of palliative care so they can die peacefully, surrounded by their loved ones.
Gina Burr, 52, a black litigation specialist from Oakland, Calif., for example, decided to discontinue treatment and accept hospice care after being diagnosed with advanced lung cancer.
"I appreciate the comfort and the support," Burr said. "They're available 24 hours a day, seven days a week."
But while the gap is narrowing as hospice and palliative care matures and grows, minorities remain underrepresented. Only 7.5 percent of hospice patients are black, and only 4.8 percent are Hispanic -- less than half their representation in the general population. A large and growing body of research has shown that a significant proportion of African Americans and other minorities, as a group, remain much more likely to want to keep fighting as death nears.
Although researchers have studied many racial groups, the best data is available for African Americans.
"We don't want to stereotype people," said Leslie J. Blackhall, who studies end-of-life issues at the University of Virginia. "There's a lot of variation within groups. But overall, many, many studies have found that African Americans tend to want more aggressive care at the end of life."
What Is a 'Good Death'?
The largest study to examine the question to date -- an ongoing Harvard project funded by the National Cancer Institute that will involve about 800 terminally ill cancer patients in Massachusetts, Texas, Connecticut, New Hampshire and New York -- is finding that African Americans are two to three times as likely as whites to want everything possible done to keep them alive, to get life-prolonging care and to die in intensive care.
This tendency, which stems from a complex amalgam of socioeconomic and cultural factors, has provoked a debate about what constitutes a "good death," with some arguing that what is seen as unnecessary, counterproductive care by some may be desirable to others.
"Not everybody buys into the mainstream image of a 'good death,' " said LaVera Crawley, a Stanford University bioethicist who studies cultural differences in attitudes about end-of-life care. "They don't necessarily want to go peacefully into the night."
Part of the explanation is socioeconomic. One study found that people with higher income and more access to treatment are about twice as likely to feel comfortable with withdrawing care as those of more modest means.
"A lot of it is not a function of race at all, really," said Etienne Phipps of the Center for Urban Health Policy and Research, part of the Albert Einstein Healthcare Network in Philadelphia. "Race is just a surrogate for economic, educational and access differences."
Part of it is that doctors do not communicate as well with patients from different backgrounds. That sometimes keeps minorities -- especially the poor and less educated for whom English may be a second language -- from fully understanding how sick they are, what more treatment would achieve, and what hospice or palliative care could do, studies have shown.
But even after researchers take socioeconomic factors into consideration, minorities still tend to express different preferences than whites for end-of-life care. One key study that Blackhall conducted of 800 elderly hospital patients in Los Angeles found that African Americans were twice as likely as whites to say they want to be kept alive in end-of-life situations, such as an irreversible coma.
Those findings are echoed by a preliminary analysis of data collected for the Harvard study from 481 subjects in Boston; Dallas; New York City; New Haven and West Haven, Conn.; and Concord and Exeter, N.H. It shows that about half the African Americans interviewed said they would want life-prolonging care even if they had only a few days left to live -- about three times the rate among whites.
One explanation may lie in the disparities in the health care available to minorities throughout their lives, researchers said.
"You may have a daughter who spent months fighting the system to get a mammogram for her mother. She's finally diagnosed with advanced breast cancer. Now they say there's nothing more that can be done. You can see how her reaction may be, 'Oh, they're just trying to avoid caring for my mother one more time,' " said Betty Ferrell, a nurse and researcher at the City of Hope National Medical Center in suburban Los Angeles who studies palliative care.
For some, this view may be intensified by distrust of the medical system stemming from historical maltreatment, such as the infamous Tuskegee syphilis study in Alabama, which denied black men treatment for the disease.
"I hear it over and over again," said the Rev. Paulette M.E. Stevens of Montgomery Hospice in Rockville. "People come to me and say, 'My mother says if I go to hospice, they are just going to try to kill her.' "
While people of all races can find it hard to discuss death ahead of time and to accept that hope is gone, such fears may make some minorities even more hesitant to forgo treatment. African Americans and other minorities are far less likely to prepare living wills or sign do-not-resuscitate orders, studies in many settings have found. A 2002 University of Pittsburgh study of 3,747 nursing home patients nationwide found that blacks were one-third as likely as whites to have a living will and one-fifth as likely to have signed do-not-resuscitate orders.
The Role of Religion
Religion also appears to be a key factor. A part of the Harvard study that focused on 230 patients and was published last month found that religious people are much more likely to want to keep fighting at the end of life and that religion tends to play a particularly important role for minorities.
"Religion is an important factor in how people think about not only hospice but pain," said Crawley, the Stanford bioethicist.
"There is a tendency to say: 'Suffering is noble. God is giving this as a test. I need to take this as a test of my faith,' " she said. " 'We got through slavery. We got through civil rights. This is just another test.' "
That's the way Driver, a deeply religious woman who dedicated her life to raising seven children, felt.
"Mother knew that according to the Bible you don't die until you give up the Holy Ghost, and she was not ready," Clarke said. "She would say: 'The doctors don't know. Only God knows when it's my time.' "
There has been less research on the attitudes of Hispanics and other minorities, but hospice workers and palliative-care specialists report similar trends, although each group has unique views. Latinos and Asians tend not to want to tell terminally ill family members that they are dying, fearing that might hasten the end. Language barriers can further complicate care. And questionable immigration status may make families skittish about taking the legal steps necessary to enroll loved ones in hospice programs.
"There is the fear factor," said Carlos Gomez of Capital Hospice. "Some of them are loath to sign lots of pieces of paper. There is the trust issue."
Many families also feel it is their responsibility to provide care and keep fighting.
"We're taught that we take care of our loved ones no matter what," said Cassandra Cotton, a black hospice worker in Las Vegas. "If I was not to take care of my mother, I would be embarrassed in front of my church and my community."
When doctors and nurses do not understand these impulses, it can lead to clashes. Often, such cases are mediated by hospital ethics panels.
"There needs to be a greater realization that there are many approaches to the terminally ill patient, and that a prolongation of care may be a reasonable choice," said William H. Bayer of the University of Rochester Medical Center, who published a study on racial preferences for end-of-life treatment last fall.
Other experts say that there is nothing noble or redemptive in suffering and that far too often patients suffer unnecessarily.
"To say that African American patients are more likely to want suffering so they will be close to God when they die is just incorrect," said Payne, of Duke University. "I think that romanticizes suffering."
While Burr, the Oakland cancer patient, opted for hospice, she said she understands why some friends are wary.
"A lot of black folks think if you write a will, that means death. It's just a cultural thing for us," Burr said. "Same thing with hospice -- hospice means death. And a lot of folks think they're just trying to railroad you to the graveyard."
Christina Clarke wishes she had been able to make her mother feel comfortable with hospice so she could have spent her last holidays at home.
"I really wanted to do that," said Clarke, whose mother died the day after Christmas. "But she had a good fight, and it was her choice. It was entirely her decision. Absolutely."