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end of life care

Health disparities and end of life care


To: Ethics Advisory Board   

From: Concerned RN

Subject: Creating change 

I’m a community health nurse and have personally witnessed how health disparities manifest in advance care planning and end-of-life discussions in Black communities. Is it within my scope to try to initiate programs to tackle these disparities?

From: ANA Center for Ethics and Human Rights

If a nurse possesses specialized training in the areas of advance care planning (ACP) and end-of-life care, it’s absolutely within the scope of practice to initiate programs that facilitate completing advance directives and help to increase awareness of end-of-life options. The Code of Ethics for Nurses with Interpretive Statements (the Code) states, “Nurses should promote advance care planning conversations and must be knowledgeable about the benefits and limitations of various advance directive documents.” The Code also reminds us, “As nursing seeks to promote and restore health, prevent illness and injury, and alleviate pain and suffering, it does so in the context of healing the whole world.” As we navigate our way through unprecedented pandemics, both COVID-19 and racial injustice, now is a good time to create ACP initiatives and build upon programs that have already produced positive outcomes.

The literature overwhelming highlights the disparities between Black and White populations in palliative and hospice care use. A 2017 study by the Kaiser Family Foundation found that only 19% of Black adults 65 years or older have documented their wishes at the end of life compared with 65% of White adults in the same age group. Additionally, a perception exists in the healthcare community that the Black population avoids end-of-life discussions and underuses palliative and hospice services.

When we recognize the role historical racism, discrimination, and accompanying systemic injustices play in perpetuating health disparities, we can create effective change. Community institutions, in partnership with nurses and clinicians, can become allies by engaging in dialogue that makes end-of-life discussions acceptable. If we seek to understand individuals’ perceptions of death and dying, and what contributes to those views, we can work toward building trust within the community, which can lead to better rates of advance directive completion and palliative and hospice care participation.

Here is one example. In Los Angeles, Maisha Robinson, a physician, and Gwendolyn Phillips Coates, a minister, have created a pilot program, “Closing the gap about crossing over”, to serve predominantly African-American churches and their members. The program trains pastors and church leaders to educate members about ACP and advance directive documentation.

Clinicians shouldn’t assume that racial and cultural attributes are barriers to improving ACP for Black communities. Nurses should advocate for more training opportunities that can give them the tools and skills to educate patients and communities about ACP and end-of-life options. Interventions such as these have the potential to reach many and ultimately help dismantle ACP disparities.

— Response by Kara Curry, BSN, RN, intern, and Liz Stokes, JD, MA, RN, director, ANA Center for Ethics and Human Rights

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