While end-of-life planning may be more common by providers and patients, there are “substantial” racial disparities when it comes to hospice use among some older adults, according to a new study. Researchers found that end-stage renal disease (ESRD) patients who were African American or Native American were 44 percent less likely to take use hospice care than white patients. Asian-Americans were 43 percent less likely to do so.
“In my line of work it’s become a major issue, this issue of how you deal with people who are really sick and dying and on dialysis,” Robert Foley, M.D., an epidemiologist at the University of Minnesota, said in a phone interview. Foley is lead author of the study, Hospice and Race for End-of-Life Care in U.S. Dialysis Patients, which he presented at a recent American Society of Nephrology meeting.
Foley wants to explore why: “is it access to care, inadequate care, economics, or some other reason?” One hypothesis is that one group seems to have longer term, more seamless care. “Could I prove it, no? you’d need a lot more evidence than what I presented at the poster session,” he said. “I think I’m just opening up the box really.”
Foley’s team examined data from the United States Renal Data System to analyze end-of-life care between 2006 and 2013 for deaths among dialysis patients over age 65. Overall hospice use among this population increased during this period, but varied widely by race. “I thought this was a nice way to look at the data, because you can take factors like insurance out of the picture for analysis,” he said.
“A common misconception is that a dialysis patient must stop dialysis in order to be accepted into a hospice program,” according to the Coalition for Supportive Care of Kidney Patients. The group’s website points out that since many ESRD patients have several co-morbidities, if the Medicare hospice benefit is used for a terminal diagnosis other than ESRD, then the patient could continue to use the ESRD Medicare benefit for continuing dialysis.
Attitudes are changing about end of life care, Foley said. “Just because we can put someone on dialysis for the rest of their life, doesn’t mean that’s necessarily what they want.”
Holly Koncicki, M.D., a nephrologist at the North Shore-LIJ Health System on Long Island, N.Y., said that too often, physicians and patients don’t take the time to discuss wants and goals early on. “We know that general hospice and end of life care is underutilized by the end stage renal population. We miss numerous opportunities to have these conversations, even when a patient is admitted to the ED in crisis.”
There are many differences in how various cultures perceive death and dying. “While patients may know their goals but because the physician doesn’t bring it up, they don’t either but they should” she said.
Koncicki, an assistant professor of medicine at the Hofstra North Shore-LIJ School of Medicine, said medical school curriculums are finally starting to address challenges of effective communication and end-of-life discussions.
However, patients from certain cultures may have a deeper mistrust of the health care system or simply don’t want to discuss death. Older, ethnic patients, “often leave the decision-making up to their adult children, but haven’t had those important conversations with them, either,” she said.
Other barriers may also exist. Low health literacy, lack of a formal assessment of patients nearing the end of life and increasing numbers of patients “dying on dialysis” who also have dementia and other cognitive or medical conditions that limit their decision-making capacity, are several issues that may affect use of palliative and hospice care, according to a presentation by Stephanie Flecksteiner, M.D., an internist in Nashville.
Patients need to know they can advocate for themselves. It’s one of the most important conversations you can have, according to Koncicki.
The good news is that rates of disparities seem to lessen over time. Trends point to an overall increase in hospice use among ESRD patients in the 65-to-80 age group, compared with 81-to-90 and 90-plus groups, Foley said. “People are starting to realize that technology can only do so much and that life planning is really important for everybody.”
Foley, whose wife is a hospice nurse, plans further research into chronic disease and disparities. He expects this study to be published sometime next year.
Foley advises journalists covering issues of end-of-life and health disparities to use sensitivity when reporting on this phenomenon.
- Consider many possibilities. Is it access to care? Is it education? Is it culture? Don’t say it’s because of X.
- Do not over stress “cause” – when you see something and think it’s caused by that – that’s a mistake – be careful before jumping to any conclusions.
- Be cautious about what you interpret and how you propagate the message. This New York Times article by Judith Graham discussed similar challenges.
- How are providers discussing end-of-life care among dialysis patients in your community? Are they?
- Do local trends align with the national data? Find kidney disease statistics here. Here is what Medicare does, and doesn’t pay for when it comes to ESRD.