Look and Think Beyond Hospice

“There must be a commitment to more than simply introducing African Americans within your community to hospice. It’s more than numbers and larger than your organization. It is about social justice and ending healthcare disparities, and helping African Americans recognize that hospice truly helps the living. As you reach out, simply consider the big picture.” 

- NHPCO’s Inclusion and Access Toolbox 

As Black History Month comes to a close, take a look at the communities in which you serve. This month can serve as one of many opportunities to educate and engage African American patients, families and caregivers on the work we do but also, other healthcare initiatives and access goals. As recent as 2015, studies continue to show that African Americas are more likely to experience poor access to medical care compared to whites.  Thus, the NHPCO African American Outreach Guide recommends looking beyond hospice by recognizing disparities on a larger scale and considering more than the illness. 

Recognize disparities and remember history. The Outreach Guide notes, “Be mindful of the realities of treatment differences, healthcare disparities and basic historical experiences.”  

NIH MedilinePlus defines health disparities as the inequalities that occur in the provision of healthcare and access to healthcare across different racial, ethnic and socioeconomic groups. 

In 1906, W. E. B DuBois, a noted scholar, editor, and African American activist, published three studies that addressed demographic issues and concerns. One of these studies, The Health and Physique of the Negro American..., is known for recognizing health disparities very early in history.  African Americans and other minorities have experienced a long history of healthcare discrimination and inequalities. Although some progress has been made through the creation of special health institutes, programs and legislation to help combat these disparities, they still exist. A 2013 study in Journal of Palliative Medicine by Dr. Kimberly Johnson of Duke University’s School of Medicine indicates that among Medicare beneficiaries, 45.8 percent of whites used hospice care, compared with 34.0 percent of African-Americans.

The 2015 Keller Report: Health Disparities in America made note of other health disparities among African American communities: 

• Overall: African Americans have higher rates of mortality than any other racial or ethnic group for 8 of the top 10 causes of death.
•  Cancer: Rates for African Americans are 10% higher than those for Americans of European descent.
•  Diabetes: African American’s are nearly two times more likely to have diabetes as non-Hispanic whites.
•  HIV/AIDS: While Black/African Americans account for 13% of the total U.S. population, they account for almost half (46%) of all new HIV infections.
•  Kidney Disease: African Americans make up more than one third of all U.S. patients receiving dialysis for kidney failure despite representing only 13% of the overall U.S. population. 

The report goes on to say, inequities in health and health care in communities of color remain deep and persistent. These inequities span from the cradle to the grave, evidenced by higher rates of chronic disease and premature death. Though there are a number of challenges in addressing these disparities, there are equally as many opportunities for us to advance and achieve health equity. I could not agree more!

Another recommendation in the Outreach Guide is to consider more than the patient’s illness. Sometimes a patient’s illness is just one part of a bigger, highly complex family system.  Consider:  

• Who cares for the patient when healthcare professionals are not present?
•  Is the patient a caregiver? If so, who will take over that responsibility?
•  Is the patient’s home environment clean and safe?
•  Does the patient have running water?
•  Does the patient’s neighborhood pharmacy carry the prescriptions and medical supplies this patient needs?

It’s important to be prepared to deal with scenarios as described above.  These can be contributing factors to other “big picture” disparities that affect the patient, their illness and ability to access good quality care and services. Become familiar with local community organizations that you can refer patients and their families to such as Meals on Wheels, utility bill and rent assistance programs, your local Department of Community and Human Services, as well as, local health departments.  Don’t just refer. Be able to give a brief overview of some of the services these organizations can offer.

Many steps can be taken to assist individuals and communities with the information and resources they need to improve their health. Some recommendations and actions include

• Increase the cultural and communication competence of health care professionals 
• Hire and train more qualified staff from these underrepresented communities 
• Participant in community-led prevention programs 
• Improve health literacy through continued outreach  
• Build trust in these communities by having a community presence 
• Much more

Opening access to everyone in your community requires a commitment to inclusion and a strategic approach to meeting the specific needs of those in the communities you serve. For additional resources to help you improve access to end-of-life care through a variety of program development, education, outreach and marketing strategies, visit nhpco.org/access.

Cozzie King
NHPCO Senior Manager, Access Programs

Deadra Gladden, pictured with a niece, had the benefit of palliative care and then hospice care services.