Overcoming Barriers to Hospice Use
Hospice is a type of health service that uses a holistic approach to providing comfort to patients at the end of life. Hospice services typically combine medical care with spiritual and emotional support. Patients can receive care across a variety of settings, including the comfort of their own home1
. Learn more about end of life preparation and care
WHY THE FOCUS ON HOSPICE USE?
Although the literature points to the benefits of hospice services, there continues to be a difference in use of hospice services2-4 when comparing racial minorities and whites. For instance, despite an increase in the percentage of African Americans using hospice services, the gap in use between African Americans and Whites appears to be widening5.
WHY ARE THERE DIFFERENCES IN HOSPICE USE?
While racial minority groups, in general, are less likely to use hospice services, there is considerably more research on the reasons for non-use among African Americans. Therefore, we mention the reasons for low use of hospice services among African Americans, but also acknowledge the challenges facing other minority groups. The relevant research7-13
points to the following reasons for low use of hospice services among African Americans:
Watch this short video on barriers to hospice use among African Americans
|1.||Mistrust of the medical system based on history.|
|2.||Research-supported belief that African Americans receive less aggressive treatment for pain, medical symptoms or diagnoses.|
|3.||The cost of hospice services.|
|4.||Lack of understanding about hospice.|
|5.||The perception that seeking hospice services is somehow indicative of a lack of faith and hope.|
|6.||Worry about missing out on life prolonging treatments also known as curative treatments.|
MEDICARE ELIGIBILITY AND HOSPICE USE
Hospice care can be costly, so patients depend on Medicare benefits to make care affordable. To qualify for the Medicare hospice benefit, a patient would have to be willing to go without curative treatment. Although there are other Medicare hospice benefit requirements, forgoing curative treatment is considered a significant barrier to participation in hospice care programs . This requirement may impact hospice use among African Americans concerned about missing out on curative treatments. Changes to Medicare hospice eligibility criteria would increase access to care15, but in the absence of such changes, researchers suggest that large (census of ≥ 100 patients daily) non-profit hospice facilities are more likely to facilitate the use of medications that may be categorized as curative/life-prolonging but have palliative use and benefits. For patients such as African Americans, large nonprofit facilities may provide increased opportunities for hospice use. The cost of hospice services will remain an important factor.
HOW CAN I MAKE INFORMED HOSPICE CARE DECISIONS?
|1.||Learn more about what hospice is and Medicare eligibility requirements. Click the links below:|
Learn about Medicare hospice benefits
See what may be covered under the Medicare hospice benefit
|2.||Ask your physician about hospice services if you will need end of life care.|
|3.||Talk with someone who has had a positive hospice experience.|
|4.||If you’re worried about being treated unfairly, have a family member or professional advocate for you.|
|5.||Find out how to cover the cost of hospice services.|
|6.||If you’re concerned about missing out on desired services, find a hospice facility that will offer your desired kind of palliative care.|
WHAT CAN PROVIDERS DO TO INCREASE EQUITY IN HOSPICE USE?
|1.||Health care providers can start a discussion about hospice service use with ALL patients in need of end of life care.|
|2.||Health care providers can make available to patients, information necessary to facilitate appropriate matching to hospice facilities.|
|3.||Hospice providers can partner with community organizations to reach under-represented groups.|
|4.||Hospice providers can create racially and ethnically diverse care teams.|
|5.||Hospice providers can assure patients of equality in pain management and treatment.|
|6.||Hospice providers can ensure consistent pain management protocol adherence for all patients.|
|7.||Hospice providers can make use of the African American Outreach Guide on end of life issues to improve use of hospice services among African Americans.|
WHERE DO I SEARCH FOR HOSPICE PROVIDERS IN MARYLAND?
National Hospice and Palliative Care Organization. NHPCO facts and figures: hospice care in America. https://39k5cm1a9u1968hg74aj3x51-wpengine.netdna-ssl.com/wp-content/uploads/2019/07/2018_NHPCO_Facts_Figures.pdf
Conner S, Pyenson B, Fitch K, Spence C, Iwasaki K. Helping patients with cancer prepare for hospice. Clin J Oncol Nurs. 2007;14(2):180-188. 3
Hill K, Hacker E. Helping patients with cancer prepare for hospice. Clin J Oncol Nurs. 2010;14(2):180-188. 4
Miller S, Mor V, Wu N, Gozalo P, Lapane K. Does receipt of hospice care in nursing homes improve the management of pain at the end of life? J Am Geriatr Soc. 2002;50:507-515. 5
Medicare Payment Advisory Council: Hospice services. In: Report to Congress Medicare Payment Policy. Washington, DC, March 2016. pgs. 304-305. http://www.medpac.gov/docs/default-source/reports/chapter-11-hospice-services-march-2016-report-.pdf?sfvrsn=0.
Last Accessed August 25, 2016.6
Washington KT, Bickel-Swenson D, Stephens N: Barriers to hospice use among African Americans: A systematic review. Health Soc Work 2008;33:267–274. 8
Johnson KS, Kuchibhatla M, Tulsky JA: What explains racial differences in the use of advance directives and attitudes toward hospice care? J Am Geriatr Soc 2008;56:1953–1958. 9
Barnato AE, Anthony DL, Skinner J, et al.: Racial and ethnic differences in preferences for end-of-life treatment. J Gen Intern Med 2009;24:695–701. 10
Johnson KS, Kuchibhatla M, Tulsky JA: Racial differences in self-reported exposure to information about hospice care. J Palliat Med 2009;12:921–927. 11
Ludke RL, Smucker DR: Racial differences in willingness to use hospice services. J Palliat Med 2007;10:1329–1337. 12
Johnson KS: Racial and ethnic disparities in palliative care. J Palliat Med 2013;16:1329–1334. Cohen, L. L. 2008. Racial/ethnic disparities in hospice care: A systematic review. Journal of Palliative Medicine 11, no. 5 (June): 763–768. 13
Crawley, L., R. Payne, J. Bolden, et al. 2000. Palliative and end-of-life care in the African American community. Journal of the American Medical Association 284, no. 19 (November 15): 2518–2521. 14
Meier, D.E. (2011). Increased Access to Palliative Care and Hospice Services: Opportunities to Improve Value in Health Care. Milbank Quarterly. 89(3):343-80.15
Carlson, M.D.A., Barry, C.L., Cherlin, E.J., McCorkle, R., Bradley, E.H. (2012) Hospices’ Enrollment Policies May Contribute to Underuse of Hospice Care in the United States. Health Affairs 31(12).