Kelsey Berry

Kelsey Berry

Postdoctoral Research Fellow, Harvard Medical School Center for Bioethics

Dissertation Title:  "To Whom? Essays on Health Resource Allocation in Organ Transplantation and Substance Use Disorder Treatment Settings"

 

Under reasonable resource constraints, not all legitimate health needs can be met – necessitating some form of rationing. This dissertation uses normative, qualitative, and quasi-experimental methods to examine how patients’ nonmedical characteristics are and should be taken into account in policies that ration access to solid organ transplantation and substance use disorder treatment.

Essay 1 (with Norman Daniels and Keren Ladin) studies whether patients’ lack of social support should prevent access to solid organ transplantation. Transplantation programs commonly rely on clinicians’ judgments about patients’ social support (care from friends or family) when deciding whether to list them for organ transplantation. With coauthors, I examine whether using social support criteria to make listing decisions for adults seeking transplantation is morally legitimate, drawing on ethical theory and recent evidence about the health effects of social support in transplantation and impacts on underserved populations. We demonstrate that the rationale for the social support criterion, based in the principle of utility, is undermined by its reliance on tenuous evidence. Moreover, social support requirements may reinforce transplant disparities, infringe on valuable forms of autonomy with respect to personal relationships, and contribute to inconsistent and non-transparent administration of the national system for organ allocation. As such, we argue that extending access to transplantation and accommodations for patients with limited social support would better balance ethical commitments to equity, utility, and respect for persons in transplantation. We suggest steps for researchers, transplantation programs, and policymakers to improve fair use of social support in transplantation.

Essay 2 (with Keren Ladin) studies how patients’ lack of social support influences patient management at solid organ transplantation programs, which bear regulatory and financial risk for post-transplant patient and graft survival. Although transplant programs are on the leading edge of implementing population health management (PHM) through integrated medical and nonmedical services, many continue to exclude patients with limited social support from transplant care at their centers. We use semi-structured interviews with 45 psychosocial, surgical, and medical clinicians at nationally dispersed transplant centers to explore transplant programs’ approach to social support and implications for access to transplantation among weakly supported patients. We find that although 73% of the sample attempted to mitigate gaps in social support to enhance patients’ transplant candidacy, only 13% felt their centers were routinely able to include patients with low social support in their transplant population. Our thematic analysis highlights how beliefs about patient responsibility for social support and aversion to the unknown in a complex, chronic care setting can limit provider willingness to intervene on gaps in social support, while scant institutional resources and state support for social services can reinforce dependence on patients’ personal networks to secure better transplant outcomes, limiting access to care for vulnerable populations. We suggest several steps to build greater consensus around extending transplant care to weakly supported patients in the transplant community.

Essay 3 studies rationing effects from offender diversion into community-based substance use disorder (SUD) treatment systems. Criminal justice reforms increasingly involve diversion programs that offer individuals charged with drug-related offenses the opportunity to complete SUD treatment in the community in lieu of incarceration. Yet demands from the criminal justice system may make community-based SUD treatment less available for other patients who share the same service system. Conversely, conditions in resource-constrained SUD treatment systems may undermine the aim of diversion programs by preventing timely treatment entry or completion by justice-ordered individuals. I examine potential rationing effects in California’s public SUD treatment system under a state-wide diversion law, subsequent to a $120 million budget cut for treatment services promised under this law. Using a difference-in-differences analysis of SUD treatment episodes, I exploit within-state variation in the effects of budget cuts, comparing SUD treatment for both justice-referred and general populations in California areas heavily burdened by budget cuts and in areas less impacted. I show that budget loss led to a 40% decline in the rate of SUD admissions for justice-referred populations, while general populations continued to enter treatment at similar rates and experienced a significant benefit in terms of reduced wait to enter treatment. These patterns suggest that statutory rights to receive treatment instead of incarceration are insufficient to protect treatment access among justice-involved populations, and the erosion of a diversion program may come at an advantage to other users of SUD treatment systems. Policies that affect funding for justice-ordered treatment services and treatment capacity in the SUD treatment system should consider potential effects on justice-involved populations and the sustainability of promising criminal justice reforms.

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