Should Lack of Social Support Prevent Access to Organ Transplantation?

Abstract

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. We examine whether using social support to make listing decisions for adults seeking transplantation is morally legitimate, drawing on recent data about the evidence-base, implementation, and potential impacts of the criterion on underserved and diverse 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 inequities, interfere in patients’ personal relationships, and contribute to biased and inconsistent listing procedures. As such, accommodating the needs of 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.

Keywords:

• social support
• organ transplantation
• ethics
• health care rationing
• justice
• inequities
• health policy

This article is referred to by:

The Qualitative Value of Social Support for Liver Transplantation

Should Poor Social Support Be an Exclusion Criterion in Bone Marrow Transplantation?

In Search of the Ideal Transplantation Candidate

Ethics of AI in Transplant Matching: Is It Better or Just More of the Same?

Credibility Excess and Social Support Criterion

Social Support Is Not the Only Problematic Criterion, But If Used at All, “Lack of Social Support” Should Count in Favor of Listing, Not Against

Gender Equity and Social Support for Transplants

Should Lack of Family Social Support Be a Contraindication to Pediatric Transplant?

A Little Digital Help: Advancing Social Support for Transplant Patients With Technology

Augment Social Support for Transplant, Do Not Penalize Its Absence

Absence of Evidence Is Not Evidence of Absence

ACKNOWLEDGMENTS

The authors are grateful for the thoughtful contributions of Douglas W. Hanto and for insightful comments from Jennifer Blumenthal-Barby and Sean Aas.

DISCLOSURE STATEMENT

The authors of this manuscript have no conflicts of interest to disclose as described by the American Journal of Bioethics and Taylor & Francis.

Notes

1. We focus throughout this essay on access to deceased donor waitlists for solid organ transplantation (kidney, liver, pancreas, heart, and/or lung) by adult patients.

2. In the remainder of this essay, we use the terms “patient selection committees,” and “committees” interchangeably to refer to transplant centers’ decision-making bodies that determine access to transplant waitlists. We use the terms “transplant clinicians” or “clinicians” to refer generally to clinicians that participate on these committees and are directly involved in selection decisions, specifically transplant surgeons, sub-specialty physicians (e.g., hepatologists, cardiologists), and psychosocial experts (e.g., transplant social workers, psychiatrists).

3. Some of these psychosocial criteria for transplantation have already elicited bioethical and public debate, and their use is evolving. See, for example, Singhvi et al. 2016 for the ethics of sobriety requirements for waitlist access. Recent surveys suggest only one in four liver transplant centers exclude patients with severe alcoholic hepatitis from transplant waitlists due to insufficient sobriety (Bangaru et al. 2018). See also, Halpern and Goldberg 2017 for ethics of cognitive impairment criteria for waitlist access. Several state laws now ban patient exclusion from transplantation on the basis of cognitive disability, due to concerns about vague criteria and discrimination against individuals with disabilities.

4. Examples of social support expectations and caregiver agreements can be found online for some programs, here: https://www.dukehealth.org/sites/www.dukemedicine.org/files/ALO_BEFORESURGERY_Book%201_20121017.pdf; https://healthcare.utah.edu/transplant/pdfs/new-patient-packet.pdf, https://prd-medweb-cdn.s3.amazonaws.com/documents/transplant/files/being-evaluated-for-liver-transplant.pdf.

5. There is also a high risk of social bias in clinical judgments of the benefit and worth of certain kinds of life. For example, lack of conventional forms of social function, i.e., participation in spousal or parent-child relationships, is often viewed negatively, as a sign of maladjustment and a barrier to life fulfillment. Yet, these beliefs are not validated in surveys, in which individuals who do lack such functioning self-describe as voluntarily alone and happily so (Ashburn-Nardo 2017; DePaulo 2006).

6. Although these epidemiological studies are subject to selection bias, their null and inconsistent findings do challenge received wisdom that more social support is better for transplant survival and medication adherence. This important finding should be understood in the context of the modern era of transplant care and an increasingly nuanced literature illustrating the complex relationship between social support and health. Routine risk has declined in transplantation as technological/medical advancements limit the potential for surgical complications and organ rejection, while supportive services from other sources have increased (e.g., transplant centers and public safety nets offering medication management, care navigation, transport to appointments)—both of which may relieve social networks to some extent (Linden 2009). We also know from broader epidemiological studies that whereas social support is generally protective of health, its effects are heterogeneous and contextually specific. In certain contexts it may even be counterproductive, particularly when unwanted by its recipient or sourced from networks with high risk health behaviors—both factors that bear special consideration in transplant listing, where social support may be recruited under duress and social networks may share high risk behaviors (e.g., substance use) that contributed to a patient’s organ failure (Deelstra et al. 2003; Lincoln 2000).

7. There is a more general concern associated with appealing to time- or cost-savings as a rationale for excluding needier patients from care in the US health system. Generally, declining to meet a patient’s health need can be justified if the resource spared—whether it is an organ, or clinicians’ time, or a health care dollar—is put toward a more just use; e.g., meeting the weightier health claims of other patients (Daniels 2008). This justification generally holds for the system of organ allocation in the US: by design, an organ, if withheld from one patient, goes to save another patients’ life. The same is not necessarily true for the clinicians’ time or public or private funds that are spared when treatment services are denied a particular patient or group of patients. Unlike organs, which are allocated in a rare example of public rationing in the US health system, time and health care dollars have a multitude of potential, unregulated uses in the US health system (Reinhardt, Hussey and Anderson 2004). As such, there is a legitimate concern that time and cost-savings from excluding unsupported patients from transplantation would be used in ways that cannot be justified (say, for leisure or profit rather than meeting the weightier health claims of other patients). If so, there is little justice in time- and cost-based denials of transplant care for unsupported patients (Daniels 1986).

8. There is some concern that overriding preferences in this domain to motivate social support may also prove counterproductive to transplant benefit. We know social relationships are often but not always protective for health, with scholars highlighting unwanted social support, discordant expectations, and stressful relationship circumstances as injurious (Deelstra et al. 2003; Lincoln 2000). For patients who have long eschewed close social relationships, the disruptiveness of developing new intimacies and dependencies for transplant could moderate any anticipated health advantage (DePaulo and Morris 2005; Rook and Zettel 2005; Tucker et al. 1996). Patients may also have good reason to resist extending relationships with or involving friends and family in their transplant care, including their risky health behaviors or past abuses (Umberson and Montez 2010).

Additional information

Funding

The authors gratefully acknowledge funding from the Greenwall Foundation through their “Making a Difference” grants (PI: Ladin), and the Greenwall Faculty Scholars Program (PI: Ladin). ▪