The High Cost of Disparity in Hospice Care for Minorities

An opinion piece published last month in The Hill, a highly regarded and objective online news publication, discussed the great disparity in end of life care for minorities. This is not a new revelation. We have known for decades that people of color utilize hospice care at the end of life in much lower percentages than their population would suggest, even when controlling for socioeconomic factors. The benefit of increased hospice utilization for people of color is obvious. The issues discussed in the article center on how to improve access and the costs of not doing so to society as a whole.

The two physicians that wrote the article, Dr. M. Courtney Hughes and Dr. Erin Vernon, suggested that we need to make policy changes to encourage higher rates of utilization by people of color. Just this past April a bill was introduced to Congress that they favor. It would allow patients served by Federally Qualified Health Centers (FQHCs) to keep their physician of choice when using hospice. They went on to say that minority patients use FQHCs at a higher rate proportionally than white patients do. Keeping a physician who knows you and your family, and is more likely to share your cultural values, might make a big difference to people of color. The authors suggest that structural changes like this could be a key to solving the problem overutilization of hospice by minorities.

The rest of the article discussed the costs of not narrowing the utilization gap for minorities. The authors point out that 25 percent of individual Medicare expenditures occur in the last year of life. They further note that Medicare spends 20 percent more on the last year of life for Hispanics and Blacks than it does for Whites. In a paper published in Gerontology and Geriatric Medicine, Dr. Hughes and Dr. Vernon estimated that increasing minority access to hospice could save over $2,100 per Medicare participant, or the equivalent of $270 million a year. 

Substantially greater savings might be realized if hospice care was used by 80 percent of those dying from a terminal illness—all races combined—rather than the current 50 percent rate that is the current reality. If another structural change to hospice care was made that would allow hospice care for up to 24 months, then Medicare might save as much as 2 billion dollars a year.

The article in The Hill did not discuss other approaches to solving the disparity in hospice care for minority populations. This is a subject we at INELDA care about and are trying to work on as well. You will continue to hear from us on this subject. But the few suggestions in The Hill article that address policy changes and their potential savings for Medicare, reminds us how crucial it is for our society to resolve this inequity in hospice care. 

We as doulas need to stay abreast of the research and policy discussions that happen around end of life care, so we can add our voices to the conversation. The doula role isn’t just about serving dying individuals, it’s about changing who gets hospice and doula care and how that impacts all of us.