Racial Differences in End-of-Life Planning: Why Don’t Blacks and Latinos Prepare for the Inevitable?

A Rutgers sociologist has found that blacks and Latinos are far less likely than whites to plan for end-of-life medical care.

Deborah Carr, a professor in the Department of Sociology, School of Arts and Sciences, conducted a study of chronically ill older adults in New Jersey and found that only 59 percent of blacks and one-third of Latinos have discussed how much medical intervention they would want near death, compared to 85 percent of whites. 

Among whites, two-thirds have a living will, compared to just 25 percent of blacks and Hispanics. 

Carr, who is also affiliated with Rutgers’ Institute for Health, Health Care Policy & Aging, studied 300 subjects aged 55 and older seeking care at two large medical centers in urban New Jersey. She published her findings in Omega: the Journal of Death and Dying. 

Both religious beliefs and cultural attitudes toward receiving support from family members accounted for the gap between white subjects and minorities, said Carr. 

Older blacks are more likely to believe that God controls the time and circumstance of someone’s death and that it’s inappropriate to interfere.

“Their thinking is, ‘this is not our decision to mess around with,” Carr said.

For Latinos, the starkest contrast involved entrusting one particular family member with durable power of attorney. Only four percent of Latinos chose a relative to voice decisions for the incapacitated patient. “The likely explanation is that if you grew up in a culture that’s close-knit, you make decisions as a family unit, you’re not going to choose one person,’’ she said.

In both black and Latino families, she said, there is evidence that people are more likely to view caring for ill or aging members as the norm, whereas white subjects had a greater fear of “burdening’’ family with their illness.

Because blacks especially have higher rates of illness, shorter life spans and less access to preventive care, it’s especially important for them to discuss what kind of treatment they would want in the event of a terminal illness and what family members’ roles would be, Carr said.

Historically, blacks have also experienced discriminatory and inappropriate treatment from the medical establishment, including the Tuskegee syphilis study, which spanned from 1932 to 1972. In these experiments, black men with syphilis were intentionally left untreated so doctors could study the deadly progression of the disease. The men were not informed about the study and instead were told they were receiving free treatment and health care. 

“Blacks’ distrust of the U.S. health care system has been widely documented … .and perpetuated by actual and perceived experiences of discriminatory or poor quality care,’’ according to Carr and other researchers.

“If you don’t trust doctors, you need to put down on paper what treatments you want or don’t want at the end of life,’’ said Carr.

For many, the creation of a living will begins when they visit an attorney to draft a last will and testament. 

“Lawyers will say, ‘why don’t we do a living will and durable power of attorney?’’’ says Carr. “But people who draft wills are normally people who own homes and have assets to protect.’’ That’s less likely to be the case for poorer people and minorities, she said.

Carr believes it’s critical to raise awareness about end of life planning among blacks and Latinos.

“I think public service announcements would help, somewhat like the ads that say, ‘Talk to your kids about drugs,’’ suggested Carr. “ But it would be ‘Talk to your mom and dad about their future.’ Take the message to community groups and churches.”  

Carr noted that health care reform could play a role. One proposed benefit of the Affordable Care Act is to cover a doctor-patient consultation session regarding end of life issues for all Medicare beneficiaries.