Social support is one of the factors providers use to determine whether a patient is a candidate for transplant. Recent research suggests this longstanding practice is ethically problematic and should be reconsidered.
“In studying transplant disparities for over a decade, it became clear that vulnerable populations have a much harder time being listed for transplantation,” says Keren Ladin, PhD, MSc, director of research at Tufts University’s Research on Ethics, Aging, and Community Health Lab in Medford, MA.
Providers often cite lack of social support as a reason for excluding a patient. “This struck me as odd given the lack of evidence demonstrating the importance of social support,” says Ladin.
In no other area of healthcare are patients excluded from life-saving treatment merely because they do not have friends or family available. “Conditioning a person’s ability to pursue life-saving treatment on social factors is ethically problematic,” says Ladin.
Ladin set out to learn more about how social support factored into the decision-making process. In one study, 584 transplant providers compared two hypothetical patient profiles and selected one for transplantation. Social support was the second most influential factor they used.1
In another study, 551 transplant providers from 202 centers estimated that on average, 9.6% of patients evaluated in the prior year were excluded due to inadequate support.2
While the researchers suspected social support was important, they were a bit surprised to see just how determinative it really was.
“I could not have guessed that 10% of all patients evaluated would be turned away due to social support considerations, nor that at some centers, up to 20% of patients are excluded,” says Ladin, lead author of both studies.
Although social support is widely considered by providers, there is no clear-cut definition. “This subjective criterion may be vulnerable to bias and used to exclude patients who seem ‘risky,’” says Ladin.
About 67% of providers felt patients of low socioeconomic status were disproportionately impacted. Most providers felt Centers for Medicare & Medicaid Services guidelines related to social support evaluations are unclear. “Many providers thought their own center’s social support evaluations were not neutral or impartial,” adds Ladin.
Nearly 25% of respondents believed that using social support in listing determinations was unfair, or were unsure. Providers were less likely to think the practice is fair if:
• they believed that social support disproportionately disadvantages low-income persons.
• they do not always inform patients that they were not listed due to social support.
In contrast, providers who thought their centers did have clear and consistent guidelines for social support evaluations were more likely to think the social support criteria are fair.
Much of the literature on transplant disparities has examined disparities that occur after the listing decision. “However, there are reasons to believe that disparities prior to waitlisting are perhaps more significant, underreported, and understudied,” says Ladin.
In other health contexts, subjective criteria such as social support are known to be challenging for vulnerable populations to meet.
“These have been shown to be susceptible to implicit bias. However, our study is one of the first to study it in the transplantation context,” says Ladin.
The degree to which implicit bias affects providers’ perception of how much social support a patient has is not well-understood.
“We need to understand how showing up with friends and family affects providers’ perceptions of patient deservingness and potential to succeed with transplant,” says Ladin.
Data also are scarce on effectiveness of interventions that could bolster social support and help patients in the important post-transplant period.
“Our studies demonstrate that providers overwhelmingly rely on this criteria and want this criteria to be reformed and that approaches to evaluating social support [should] be standardized,” says Ladin.
The studies’ findings suggest that transplant centers should not rely exclusively on social support to exclude patients. Instead, says Ladin, “They could use social support to identify patients who could benefit from additional support and care coordination.”
The application of medical criteria to vet patients for organ transplantation is standard practice since transplants are a scarce resource, says Leslie M. Whetstine, PhD, chair of the IRB at Walsh University in North Canton, OH. “Success for those in critical need must be optimized,” says Whetstine. While guidelines vary, some medical contraindications for transplant include active substance abuse, current malignancy, or morbid obesity.
“On the face of it, listing decisions based on such metrics ostensibly limits bias,” says Whetstine. It ensures that organs are allocated fairly, based on the assumption that medical criteria are purely objective and can be applied across populations broadly.
“But screening on the basis of medical criteria is not as straightforward as we would like to believe,” says Whetstine. For example, chronic illness is more prevalent in people with lower economic status. This speaks to the added caution needed if patients are going to be excluded based on non-medical factors.
“Such policies run the risk of further marginalizing the disenfranchised, including the poor and the mentally ill, among others,” says Whetstine.
Denying candidates based on judgments of social worth, such as someone’s occupation, is a clear violation of the ethical principles of justice and respect for persons.
“Allocation based on life expectancy or previous transplant, where the outcomes are less clear, raise a complex of issues for analysis,” says Whetstine.
As for the practice of excluding patients on the basis of inadequate social support, “this has been recently challenged due to a lack of evidence and variation in application,” says Whetstine.
Policies directing organ allocation must consider how medical and nonmedical factors are weighed in a society where wealth and health disparities are significant.
“These discussions must be informed by an interdisciplinary approach that involves medicine, the social sciences, and the humanities in order to develop and implement sound, just policies,” says Whetstine.
REFERENCES
1. Ladin K, Emerson J, Butt Z, et al. How important is social support in determining patients’ suitability for transplantation? Results from a national survey of transplant clinicians. Journal of Medical Ethics 2018; 44:666-674.
2. Ladin K, Emerson J, Berry K, et al. Excluding patients from transplant due to social support: Results from a national survey of transplant providers. Am J Transplant 2018 Jun 7. doi: 10.1111/ajt.14962. [Epub ahead of print]
SOURCES
• Keren Ladin, PhD, MSc, Director, Research on Ethics, Aging, and Community Health (REACH Lab), Tufts University, Medford, MA. Phone: (617) 627-0788. Email: [email protected].
• Leslie M. Whetstine, PhD, Chair, Institutional Review Board, Walsh University, North Canton, OH. Phone: (330) 400-0926. Email: [email protected].
Social support is one of the factors providers use to determine whether a patient is a candidate for transplant. Recent research suggests this longstanding practice is ethically problematic and should be reconsidered.
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