About the Author(s)
Recent Developments

Ethnic Disparities in U.S. End of Life Use of Hospice
Katherine I. Pettus, PhD

Despite articulated preferences, Hispanics and African-Americans are less likely to use hospice and comfort care at the end of life, and more likely to die in the ICU having received aggressive and often futile care.

Keywords: health equity, end-of-life, minorities, ethnic studies

Published: 16 August 2012
Cite as: Pettus KI. Ethnic Disparities in U.S. End of Life Use of Hospice.
Bull Health L Policy. 2012;1(1): e12.


Persistent underuse of hospice by ethnic minorities in the U.S. and higher end of life costs implicates two potential perspectives. On the one hand, American minorities appear to be satisfying individual and cultural end of life (EOL) preferences in that they are choosing the best possible care available, rather than “giving up” or receiving what is perceived as “inferior care.”
1 On the other, they are often subjected to futile and expensive procedures that may cause unnecessary suffering, forgoing the comfort and supportive care supplied by hospice.

Issue: Hispanics and African-Americans Have Much Higher End of Life Costs

A 2001 study of Medicare decedents found that “[i]n the final 6 months of life, costs for whites average $20,166; blacks, $26,704 (32% more); and Hispanics $31,702 (57% more). Similar differences exist within sexes, age groups, all causes of death, and within similar geographic areas.”2 This difference in costs may be related to lack of access to primary care throughout the lifetime of the patient, and not having a usual source of care and an established relationship with a physician.3 Numerous studies, including the influential 2002 IOM Study on Health Disparities (“Unequal Treatment: Confronting Ethnic and Racial Disparities in Health Care”), have documented systematic lack of access, inferior pain control and lower life expectancy for American ethnic minorities.4 Lack of, or inferior care before the end of life is expressed once the end is immanent, as a desire for maximum treatment. As Annette Dula says, “Getting unwanted care is not the issue; rather getting preventive and routine quality care has always been and continues to be the issue.”5
Medicare Hospice Benefit
A clear barrier to hospice use is related to Medicare insurance coverage. The Medicare hospice benefit requires that patients choose between “curative” treatment and hospice and mandates a terminal prognosis of six months or less.
6 Patients and families who want to “fight to the end” either don’t use hospice at all, or come in very late. In addition, minority patients and families may be forming their preferences regarding EOL care from a position of limited information.7 Poor communication between clinician and patient has been cited as a serious problem in this regard.8 However, it also appears that African-American and Hispanic conceptions of spirituality and ideal EOL care are incongruent with the actual demographics of their dying.9 Minorities appear to be acting “irrationally” in opting for aggressive care rather than hospice at the end of life.
Ethnic Diversity
It is essential that these issues with minority groups and hospice care be addressed for social and societal reasons. Current work on hospice and minority use shows important challenges and changes needed for these adults, as an increasing diversity of racial and ethnic minorities use hospice resources.10 While some hospice use is increasing amongst older adults, and ethnic and racial minorities represent a larger fraction of these patients, there is still disproportionate underuse these groups. Work in cultural competency, health literacy, and patient belief systems are necessary to address this disparity. With increasing numbers potentially accessing hospice services, research specifically focusing upon best practices for diverse groups, both to educate about hospice itself and its benefits, should be a priority in these populations.11

Hospice use amongst racial and ethnic minorities is disproportionately low and has a historical context. Additional research on hospice use focusing on specific needs of these populations is necessary to address this disparity.

Competing Interests:
None reported
Acknowledgments: None reported

Katherine Irene Pettus is a first year student in the MAS Health Law Program at California Western School of Law-University of California, San Diego.  She earned a Masters degree in International Affairs, and a doctorate in Political Theory from Columbia University in New York. 

References (Bluebook)
1. See Annette Dula & September Williams, When Race Matters, 21 Clinics In Geriatric Med. 239, 240-41 (2005).
2. Amresh Hanchate et.al., Racial and Ethnic Differences in End-of-Life Costs: Why do Minorities Cost More Than Whites?, 165 Archives of Internal Med. 493, 493 (2009).
3. Id. at 497-98.
4. Carmen R. Green et al., The Unequal Burden of Pain: Confronting Racial and Ethnic Disparities in Pain, 4 Pain Med., 277, 277 (2003).
5. See Dula & Williams, supra note 1, at 241 (2005).
6. See Jung Kwak et al., Racial Differences in Hospice Use and In-Hospital Death Among Medicare and Medicaid Dual-Eligible Nursing Home Residents, 48 The Gerontologist 32, 33 (2008).
7. Jessica M. Fishman et al., Is Public Communication About End of Life Care Helping to Inform All? Cancer News Coverage in African American Versus Mainstream Media, 117 Cancer 1, 2 (2011).
8. Elizabeth Trice Loggers et al., Racial Differences in Predictors of Intensive End-of-Life Care in Patients With Advanced Cancer, 27 J. Clin. Oncol. 5559, 5564 (2009).
9. Cynthia Ramnarace, Fewer African Americans Plan for End-of-Life Care: Blacks Half as Likely as Whites to Have Living Wills, AARP (Jan. 7, 2011), http://www.aarp.org/relationships/caregiving/info-01-2011/planning_end_of_life_care.html.
10. Iraida V. Carrion et al., Hospice Use Among African Americans, Asians, Hispanics, and Whites: Implications for Practice, Am. J. Hosp. Palliat. Care (2011), doi: 10.1177/1049909111410559, at 1, 1-2.
11. B. Han et al., Medical Differences in Hospice Use Between Black and White Patients During the Period 1992 through 2000. 44 (8 suppl.) Med Care 731, 737 (2006).

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