Everyone will die eventually. We all have that in common. With a life-ending illness, we have the choice of hospice care. All of us deserve that choice.
However, a growing body of research suggests non-white Americans are much less likely than their white counterparts to enter hospice care. Even when controlling for socioeconomic factors such as income, age and education, there is a significant racial and ethnic disparity when it comes to hospice utilization.
Decades of experience show that hospice care offers patients and their families many benefits during an extremely emotional and vulnerable time. Given these benefits — which include ensuring comfort, convenient home care, social and spiritual support — it’s little wonder that more than half of Medicare beneficiaries choose to take advantage of hospice care before passing away.
These benefits know no single race, ethnicity, national origin or language. They can be universally enjoyed by all. Yet, disparities still exist due to barriers to access, cultural differences and lack of understanding.
A study published in Journal of Pain and Symptom Management showed 84% of Hispanics in Queens County, N.Y., said they have never heard of hospice, and similar trends hold for members of other minority groups. Without knowing what options are available, it is impossible for patients to make informed choices when it comes to end-of-life care. When asked if they would like to learn more about hospice care, an overwhelming majority of individuals in underserved communities said yes; 95% of Hispanics and 94% of Chinese speakers were open to exploring the hospice option if they had more knowledge about it.
By not electing hospice, communities of color are not only missing out on improved quality of life and compassionate care, but they also are spending more health care dollars. Minorities are much more willing than whites to pay significant sums for life-sustaining treatments instead of hospice. This is perhaps why Medicare spends about 20% more on the last year of life for black and Hispanic individuals than white individuals. Increasing access to hospice in minority communities could save Medicare more than $2,100 per enrollee — equal to about $270 million in annual savings. Higher hospice utilization for the U.S. as a whole is estimated to generate savings between $2,309 to $17,903 per hospice user — up to $2 billion per year.
Medicare savings are one thing, but not having the experience of hospice care because the patient and family members have not been informed is another. That has to change.
To close the gap, the path forward is clear: We must expand access to — and knowledge of — hospice care. Fortunately, many in Congress agree. The bipartisan Rural Access to Hospice Act (S. 1190/H.R. 2594) will remove a significant access barrier among underserved patient populations by empowering patients served by rural health clinics and federally qualified health centers (FQHCs) to keep their physician of choice when electing hospice care. FQHCs serve a higher proportion of racial and ethnic minorities, meaning historically underserved communities can have greater access to hospice. If enacted, the bill would allow millions more Americans to choose hospice care so patients and families can experience more peaceful and meaningful time together.
There should be no barriers to that choice.
Hughes MC and Vernon E. Gerontol Geriatr Med. 2019;doi:10.1177/2333721419855667.
Martin MY, et al. Cancer. 2011;doi:10.1002/cncr.25839.
Nath JB, et al. JAMA Intern Med. 2016;doi:10.1001/jamainternmed.2016.0705.
Pan CX, et al. J Pain Symptom Manage. 2015;doi:10.1016/j.jpainsymman.2014.09.016.
The National Hospice and Palliative Care Organization. Hospice: Leading Interdisciplinary Care. Available at: www.nhpco.org/wp-content/uploads/2019/05/hospice_policy_brief.pdf.
Edo Banach, JD
President and CEO
National Hospice and Palliative Care Organization
Disclosures: Banach reports no relevant financial disclosures.