Social Justice and Palliative Care Policy

In an effort to engage in social action to address racial inequity, SWHPN’s Statement on Racism and Structural Inequities in Hospice and Palliative Social Work is suggesting the bold and necessary step of asking us to critically question how we, as hospice and palliative care social workers, are contributing to maintaining systems of inequity in the work that we do.
These are hard conversations to have, but needed to do the work necessary to correct racial and ethnic disparities inherent in end-of-life care. In the book, Anti-Racist Social Work, Lena Dominelli writes that racism is not just a matter that can be “educated away,” but rather requires the “eradication and the transformation of our socio-economic and political structures.”

To begin to be anti-racist palliative care and hospice social workers, we need to examine our own personal biases and the systems of care that pay our salaries and contribute to poorer care provision for people who are not white. Using a lens of intersectionality to examine the market based economy of health care in the United States, having a life-threatening illness and being black or Hispanic unfortunately, leads to poorer end-of-life care outcomes. As our healthcare system struggles to care for those impacted by COVID-19, we have seen that higher rates of infection and death have occurred in nonwhite communities. Palliative care research also tells us that racial and ethnic minorities experience a higher likelihood of difficulties in managing symptoms from all illnesses, including higher rates of experiences with pain, a higher likelihood of hospitalization in final stages of life, and a higher likelihood of discharge from hospice. According to the National Hospice and Palliative Care Organization (NHPCO), hospice utilization rates for blacks and Hispanics/Latinx persons are still vastly disproportionate when compared to the general population, with 82.5% Caucasian, 8.2% African-American, and 6.4% Hispanic/Latinx patients enrolled in hospice compared with the overall U.S. population percentages of 60% Caucasian, 12% African-American, and 18% Hispanic/Latinx. 
In a recent article I co-authored in The Journal of Policy, Practice and Research I attempted to examine these disparities using a social justice informed policy analysis to examine two of the primary payors for end-of-life care, the Hospice Medicare Benefit and Medicare coverage for Palliative Care. In practice, these federal policies have substantially socially unjust effects by providing disproportionate advantages for those who are white, have family caregiving support systems, and higher socioeconomic status.

We need to ask ourselves, what role do we play in maintaining this hospice and palliative care system of structural inequity that favors and maintains a norm of whiteness and socioeconomic stability?  We also need to recognize how the hospice and palliative care workforce continues to not only serve more whites than other ethnic minorities, but also maintains a majority of whites employees in professional and leadership roles, while at the same time maintaining a low paid workforce of direct care workers who are more likely to be black and brown women.  

Social workers are trained to be integrated practitioners, meaning that we can, and should, be considering multiple levels of practice when working with client systems. However, often, social workers tend to focus primarily on roles that are more reflective of micro level of practice. A recent job analysis of 482 hospice and palliative care social workers published in the Journal of Social Work in End-of-Life and Palliative Care showed that social workers consider macro practice or “engaging in social policy and community development” to be of lower importance in job tasks when compared with other more traditional micro practice roles. This moment in history should be recognized as a call to action for social workers to engage in policy analysis and examine policy outcomes to better develop skills in policy action and political organization.

Interested in learning more concrete ways to influence and address macro level changes that are needed?
  • See SWHPN's List of Resources for Health & Race Equity
  • Participate in SWHPN's next TweetChat, which are announced on the SWHPN Events Calendar
  • Send us your resources or suggestions for what we can share with the field or how we can improve as an organization of social workers
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