Late-stage cancer patients who are black have as much trust in their oncologists as those who are white, and they are just as likely as whites to say they've discussed their end-of-life wishes with their oncologist. Yet, according to a multi-site research study, white patients are three times as likely as blacks to get the end-of-life care of their choice, and that was true whether or not blacks want aggressive care.
“DNR [do not resuscitate] orders are perfectly protective in white patients, but that wasn't the case in black patients,” said Holly G. Prigerson, PhD, Director of the Center for Psycho-oncology & Palliative Care Research at Dana-Farber Cancer Institute and senior author of a study on end-of-life racial disparities published online ahead of print in the Journal of Clinical Oncology.
Dr. Prigerson, also Associate Professor of Psychiatry at Brigham & Women's Hospital, Harvard Medical School, and her coauthors attributed the racial disparity to a gap in communication: “Communication between black oncology patients and their care providers was inferior to that for white patients,” Dr. Prigerson said.
The researchers reached their conclusions after interviewing 302 adult patients with Stage IV disease—234 white and 68 black—at six cancer centers in New England and Texas. After the patients died, follow-up interviews were conducted with their informal caregivers.
Dr. Prigerson said that in spite of the racial disparity, she and her colleagues are convinced that oncologists can improve communication with their patients enough to ensure that all patients get the end-of-life care of their choice.
“I've never found an obvious case where a white physician would treat a black patient differently,” said Angelo Volandes, MD, MPH, an end-of-life researcher at Massachusetts General Hospital who was not involved with the study. But, he added, “Many studies show that physicians are not best when it comes to communication.”
Effective communication begins with understanding patients’ needs; and as Dr. Prigerson and her colleagues found, the needs of most black patients differ from those of most white patients. African Americans in the study were diagnosed at an average age of 55, five years younger than white patients.
“They're at a younger age and a higher stage,” lead author Elizabeth Trice Loggers, MD, PhD, said of African American patients. Dr. Loggers, a medical oncology fellow at Dana-Farber at the time of the study, is now affiliated with Group Health Research Institute and the Fred Hutchinson Cancer Research Center in Seattle. “Their first experience with cancer is, on average, different from the experience a white person has.”
Dr. Prigerson speculated that blacks may be less ready to think about death than white patients who are older, have known about their cancer longer, and have built up a relationship with their oncologist.
“Patients have to be in a state of psychological readiness to discuss end-of-life care,” she said. “Those forced to discuss it when they're not ready are more likely to get aggressive care and less likely to go to hospice.”
She mentioned an earlier study she led, presented at the most recent ASCO Annual Meeting (Abstract 9500) that showed that patients in the first, or numbness, stage of Elizabeth Kübler-Ross's five states of grief were not ready to discuss end-of-life care, but were more receptive in the later stages of anger, bargaining, depression and acceptance.
Another barrier to effective communication could be lower education levels in some black patients. Those in the study had a mean of 11.2 years of education, compared with 13.8 in white patients. Dr. Volandes contends that it is health literacy, and not race, that shapes patients’ end-of-live choices. In a study last year in the Journal of Palliative Medicine (2008;11: 754–762), he and his colleagues showed that well-educated African Americans and whites were equally likely to eschew aggressive care. On the other hand, less educated blacks and whites were as likely to choose it.
“If patients have high health literacy, whether they're black or white, they understand CPR and intensive care much better than people with low health literacy,” Dr. Volandes said. “Education seems to mediate the role of race in preference at end of life.”
Marital Status Also a Factor
Another significant demographic difference that may have affected patients’ likelihood of receiving their preferred end-of-life care is marital status. Nearly 62% of the white patients in the Loggers et al study were married. When they couldn't speak for themselves, their decisions were in the hands of the person who knew them best. Slightly less than 28% of the African American patients were married, forcing them to rely on more distant relatives or friends who might not have known their end-of-life preferences.
“It's my impression that who your primary caregiver is matters in understanding your wishes and for helping you cope with these incredibly stressful decisions,” said, Dr. Loggers, who is a practicing oncologist.
The two black patients in the study whose DNR orders were not followed both had changed informal caregivers after requesting the order, she noted. Both also spent their final days in hospitals different from where they had received primary oncologic care, thus adding to the confusion over their wishes.
Religion & Fear Influence Choices
If clinicians are unsure what a patient wants, they typically err on the side of aggressive care, Dr. Prigerson said. “If we don't know, and there's no DNR order, there's a sense that blacks want more aggressive care. The default is ‘let's not under-serve them.’”
That thinking comes from experience with blacks, who indeed are more likely than whites to opt for aggressive care, she said. Nearly 37% of the black patients in the study said they preferred intensive end-of-life care, compared with slightly less than 22% of white patients. Slightly more than half of white patients had a DNR order vs only 31% of black patients.
Dr. Prigerson said African Americans’ desire for life-prolonging care may stem in part from their religious beliefs: The study revealed that nearly 84% used positive religious coping vs only 32.5% of white subjects.
“Patients who are more religious want and get more aggressive care,” she said. “They want to hold out for a miracle.”
Fear and mistrust also appear to influence black patients’ desire for intensive end-of-life care, even though 98% of both black and white respondents expressed trust in their physician, Dr. Loggers said.
“Trusting the oncologists doesn't mean black patients trust a health care institution. Given the history of racial experiences, fear of abandonment may still be a factor which the current study did not address.”
Some of that fear comes from inexperience with health care providers. Less than a third of the African Americans in the study had health insurance, compared with 77% of whites.
“They did not have a consistent history of medical care or a history of providers,” Dr. Prigerson said.
To help patients make an informed choice and ensure their wishes are honored, Dr. Volandes advises oncologists to start by clearly explaining patients’ choices in terms they understand.
“Remember, you're not speaking to another clinician,” he said. “You're talking to someone who might have never been in a hospital before.”
While most white adults have probably talked about end-of-life care with their peers, Dr. Volandes said African Americans typically avoid the topic.
“Have these conversations as early and as often as possible,” he said. “They should be part of the standard workup. Not to do so is not doing your job.”
Although such discussions may be difficult, Dr. Prigerson noted that an earlier study by her group with Alexi Wright, MD, as first author (JAMA 2008;300: 1665–1673) refutes the belief that such conversations make patients feel hopeless. Patients in that study who had discussed death with their physicians accepted their illness and enjoyed a better quality of life than late-stage patients who had not.
Even after patients voice their preference, oncologists should continue discussing end-of-life care, Dr. Loggers cautioned, noting that although white patients in her study were three times as likely as blacks to receive the end-of-life care they wanted, nearly as many blacks (35% vs 38%) claimed that they had discussed the issue with their physician.
“Question the stability of their preferences,” Dr. Loggers said. “Patients might make the choice they think their oncologist wants. If they seem unsure, bring the issue up again later.”
In an accompanying editorial, Ramona Rhodes, MD, MPH, and Joan M. Teno, MD, MS, of the Warren Alpert Medical School of Brown University, say that the remedies for disparity in end-of-life care are as many as the causes—for example, “cultural sensitivity, health literacy, and respect of individual spiritual beliefs”—and are important parts of the solution. Preferences for end-of-life (or any) care are meaningless without a care plan and health care structure with adequate systems in place to ensure that those wishes are respected and that the patient receives patient-centered care, the editorial said.