Angela Xia is a PhD candidate in Religious Studies at the University of Pennsylvania and a - Research Fellow.
As a 2023-2024 Consortium Fellow, I conducted research for two projects: one on the hospice movement in the United States, and another on the expansion of long term care for Asian American elders. Both projects share a time period (1970s-1980s) as well as a thematic aim: to understand how notions of ethnicity, race, or religion affected the distribution of healthcare.
In January 2024, I traveled to Duke University to examine the Richard Payne Papers. Dr. Payne’s papers contained numerous reflections by Dr. Payne on how he came to practice palliative care. Already a decorated oncologist and pain specialist, Payne developed an interest in hospice care in the early 1990s after witnessing the illness of his brother-in-law. That led Payne to realize that he “was trained and practiced with a false frame of mind that the really important medical issues happen in [his] office.” From this period onwards, Payne began to collaborate with bioethics centers, philanthropic foundations, and universities to promote hospice among the general public.
Dr. Payne was particularly concerned about the low utilization of hospice by African Americans, which a 2013 pamphlet in Payne’s collection reported was just 8%, compared to White Americans’ utilization rate of 87%. As Payne consistently pointed out in his speeches and presentation notes, due to the history of forced experimentation, forced sterilization, withholding of treatment, and racial segregation in American medicine, many African American and Latino communities regarded hospice with intense suspicion. To be told by medical authorities to forgo treatment and accept death was in many ways an insult.
In response, Dr. Payne convened conferences, wrote articles, and studied up on how clinicians might best educate and persuade patients of color about hospice. Through Payne’s papers, I learned about the general overview of these events, as well as numerous colleagues working on equitable access to palliative care during this time. Notable figures include Dr. Marian Gray Secundy, a professor of clinical ethics at Howard University, as well as Sandy Chen Stokes, a nurse and hospice advocate among the Chinese American community in California.
As a scholar trained in religious studies, I could not help but notice that Dr. Payne and his colleagues used commonly held perceptions about racialized religiosity to promote palliative medicine. For example, a pamphlet from the Harlem Palliative Care Network declared that “churches and religious leaders would be included in the network to build trust… the church is very important among Hispanic and African American families and is often the first resource they turn to during a period of crisis.” Conferences and curriculum titles revealed a similar sentiment, using biblical euphemisms for death such as “Crossing Over Jordan” and “Last Miles on the Way Home” in order to appeal to supposedly religious, supposedly racially diverse, audiences.
The view of hospice at the National Library of Medicine, which I visited in May 2024, was from an earlier period than Dr. Payne and his colleagues. The holdings I looked at here were primarily published literature (i.e. speeches, reports, directories, and newsletters) from the 1970s and early 1980s. Together they will prove very useful in tracking how hospice philosophies changed over time, particularly as hospice advocates sought to convince the federal government of hospice’s cost-effectiveness and utility.
Indeed, hospice had many government backers in the Department of Health, Education, and Welfare (later Department of Health and Human Services), such as social work trailblazer Bernice Catherine Harper and Secretary Joseph Califano Jr., who in a 1978 speech lauded hospice as a “sensitive, institutional expression of human warmth” and invited local hospices to begin demonstration projects in preparation for making hospice a Medicare benefit. The National Library of Medicine offered cursory information on these demonstration projects through local hospice manuals, national hospice directories, and reports by regional hospice coordinators.
At the University of Pennsylvania, which I visited in October 2024, I expected to find in the Walter Lear Papers a great deal about long term care in the Philadelphia region, including material on hospice. I found a few letters of objection from the local leaders protesting the City of Philadelphia’s plan to deinstitutionalize its mental health system in 1969.
Fortunately, I was much luckier at the Rockefeller Archive Center, where I consulted the John A. Hartford Foundation Records and the National Committee on US-China Relations Records. The Hartford Foundation Records provided the bulk of relevant material, including a CV and grant proposal documents by Dr. Josefina Magno (an early promoter of hospice), and newsletters and reports from the National Hospice Organization (NHO), an advocacy group that worked to centralize hospice operations. From this information I learned that certain regional hospices tried a variety of strategies to secure funding and legitimacy for their efforts. The Hospice of Milwaukee, for instance, directly approached employers and requested hospice reimbursement as part of contractual health coverage, while the Hospice of Santa Barbara tried (and failed) to merge with the local Visiting Nurses Association.
Outside of hospice, an unexpected – and exciting – find from the Hartford Foundation Records was a series of newsletters and grant reports from a San Francisco based long term care group called On Lok Senior Health Services. Founded in 1971 as a demonstration project to make adult day health services part of Medi-Cal (California’s state equivalent of Medicaid), in the 1980s On Lok created a comprehensive long term care system for residents and former residents of San Francisco’s Chinatown neighborhood. On Lok will be interesting to study for a number of reasons. For one, their multi-lingual, multi-cultural system served not only Chinese American elders, but also a number of Filipino American and Italian Americans as well. Moreover, sources show that On Lok tried from its inception to make their organization an HMO for low-income elders by obtaining a waiver from California’s freedom of choice provisions (Section 1115 of the State Code). Whether On Lok was successful in doing so remains unclear, but unraveling the steps the group took to get there could reveal much about the ways minority-serving healthcare actors strategically used the tools of America’s private-public healthcare financing system.