Organ transplantation saves lives but requires a wait, and the wait for a suitable organ often means waiting for another life to end. This complex waiting game captures 104,101 people in the United States who are currently in need of a life-saving organ transplant [1]. Organs are a scarce resource, so allocating them for transplant requires a highly regulated selection process. Beyond scarcity, the intensity of the surgical procedure, extensive recovery time, and efforts necessary to maintain a new organ post-transplant all contribute further to the complex listing process for organ transplant. Therefore, care teams must evaluate many medical and social factors to determine if transplantation is the appropriate care plan for each patient.
A primary social consideration in the evaluation of one’s candidacy for transplantation is social support. In their article “Should Lack of Social Support Prevent Access to Organ Transplantation?” Berry et al. argue that limited social support should not serve as an exclusion criteria for transplant candidates [2]. They discuss the lack of evidence between social support criteria and transplant outcomes, and defend that social support requirements contribute to inequity and inconsistency in transplant care [2]. They argue that rather than requiring social support for transplant listing, a more ethical approach may include supporting the needs of the patients with a limited support system. Although their alternative proposal claiming that accommodating social support needs of those who lack it would be more ethically sound than excluding them from transplantation sounds nice, social support as a consideration remains essential. I will discuss why social support is part of the evaluation process for organ transplantation, how transplant medicine is unique from other medical specialties, then address the burdens associated with maintaining social support. I will conclude by considering future steps towards more ethical evaluations of social support.
Why Social Support?
We must consider why social support is a consideration in the first place. A recent survey approximates that about “10% of patients who pursue transplant evaluations are excluded due to inadequate social support” [2]. UNOS does not specify social support as a factor for organ matching, but it is a consideration across many major transplant centers for listing, including here at the University of Virginia Health System [3]. Other associations, such as CMS (the Centers for Medicare & Medicaid Services) and professional transplant societies, have established national guidelines requiring social support assessment to determine transplant suitability [4].
What does this social support criterion look like in practice? Consider the patient who lives alone, does not have a planned social support network, and comes to appointments alone or with inconsistent caregivers each time. This patient is more likely to mix up medication and be anxious about the logistics of many appointments (scheduling, traveling, etc). These are only a few of the many burdens that fall onto patients who receive an organ transplant. Now, consider the patient who has a strong social support system. Imagine they have 1-2 caregivers who are committed to their treatment and the success of their transplant. This caregiver has agreed to provide transportation, meet with clinicians to arrange scheduled medications weeks in advance, be available to provide around-the-clock care, and attend all appointments to ensure they have an accurate understanding of the severity of disease, the urgency of surgery, and the significance of recovery. The patient with social support is far more likely to be able to execute their treatment plan and experience a successful organ transplant.
At UVA Health, social workers see patients regularly throughout treatment to evaluate the level of commitment of their social support network. The initial visit for prospective transplant patients at UVA is comprehensive and includes an evaluation by a team of clinicians who assess each patient’s medical status and organ failure, financial resources, and psychosocial factors, including social support. When asked about the value of a social support criterion, the UVA transplant team responded with the following justification: absence of a strong social support network makes patients more vulnerable to the risks of transplant surgery and recovery, setting them up for an unsuccessful transplant experience.
2.What Makes Transplant Unique
Berry et al. identify that in other medical scenarios patients are rarely evaluated based on social support as a criteria for receiving life-saving treatment [2]. Others draw parallels between pediatric social support and transplant care, claiming pediatric patients should not be withheld life-saving treatment because of insufficient parenting, so transplant patients should not be excluded because of suboptimal social support [5]. Yet, one must recognize that the life-saving treatment associated with organ donation is a unique facet of medicine. Specifically, organ transplantation differs from other treatments in the consideration of utility, as organs are low in supply but high in demand. Taking a risk on an organ recipient– whether it be medical or social– has far-reaching consequences. Not only does an unsuccessful transplant harm the patient whose body is rejecting a life-saving organ, but they harm the next patient on the long waitlist who is crucially ill and denied treatment. This next patient may have had a stronger chance of survival, but instead “two patients die: the one who was transplanted and the one who was not” [6]. Thus, we must take extra measures with organ listing to ensure that the limited supply is distributed in a way that maximizes survival of the organ and minimizes risk, which promotes overall patient survival.
3. The Burdens
In meeting with social workers and attending organ listing selection meetings, it has become apparent to me that social support is a crucial consideration and a strong predictor for successful outcomes. Getting a transplant requires dozens of appointments before and after the procedure, for which patients need rides to and from. The number of medications transplant patients must take is often too much for a single person to handle, especially one who is recovering from a highly invasive surgical procedure. Therefore, adherence to post-transplant treatment and medication is largely emphasized to transplant patients and their caregivers. Social support is associated with adherence, as shown by a 50-year period meta-analysis that found adherence to be “1.74-times higher in patients from cohesive families, but 1.53-times lower in patients from families in conflict” [7].
Further, the emotional burden that comes with the process of organ transplant is high. Patients experience anxious anticipation, fear of death, and hesitancy about receiving an organ from another human’s body. Not to mention, the physical suffering living with end-stage organ failure along with the post-surgery recovery takes a toll on one’s mental health and quality of life. The 2004 meta-analysis studies found an association between post-transplant major depressive disorder and an absent caregiver support system [8]. Thus, the emotional component of social support is crucial– it is a catalyst to a strong recovery and gets patients out of bed, talking, eating, and living again [6]. While crucial, the emotional social support is also irreplaceable and requires “long hours, encouraging words, and true personal investment in the patient” [6].
As I have argued, social support is critical to a successful transplant especially considering the burdens of transplant treatment. Although there may be variation across systems and providers about what degree of social support is considered “adequate,” it should not be penalized and therefore go unconsidered for assessing transplant candidacy. Taking potentially burdensome measures at the front-end of one’s treatment, such as proving and providing social support, may help reduce greater and more life-threatening burdens later in the course of one’s treatment that arise due to a lack of adequate social support. The social support evaluation measures may feel burdensome but for good reason– they are crucial to the survival of the patient and the organ.
4. Improvement Going Forward
Berry et al. discuss the variation in social support criteria across medical centers and individual clinicians, leading to an inconsistent evaluation of adequate social support, if evaluation takes place at all [2]. While social support evaluation can undoubtedly be subjective and inconsistent, it is still a valuable tool that should be considered for organ transplant candidacy. Instead of deemphasizing the importance of social support, we should shift our focus to minimize inconsistencies and subjective evaluations. To ensure assessments are backed by evidence and avoid subjective interference, transplant centers must rely on uniform, qualitative social support evaluation measures to predict outcomes.
Additionally, transparency is paramount in providing organ transplant care. It is crucial that providers are transparent with their patients about why they are denied transplant and that they are clear about the purpose– to guarantee that patients have the resources and emotional support network to get them through the exhaustive treatment [6].
5. Conclusion
Organ transplant provides life-saving treatment of a scarce resource, so the allocation of organs is complex and requires careful consideration of many factors. Social support evaluation is an important and appropriate measure for transplant patients, as adequate social support helps prepare patients for unexpected risks, promote individual wellbeing and transplantation success, and accounts for the proper distribution on a population level of a limited supply of life-saving treatment resources.
References
UNOS Data and Transplant Statistics | Organ Donation Data. (n.d.). UNOS. Retrieved March 21, 2023, from https://unos.org/data/
Berry, K. N., Daniels, N., & Ladin, K. (2019). Should Lack of Social Support Prevent Access to Organ Transplantation? The American Journal of Bioethics, 19(11), 13–24. https://doi.org/10.1080/15265161.2019.1665728
How we match organs. (n.d.). UNOS. Retrieved March 21, 2023, from https://unos.org/transplant/how-we-match-organs/
Ladin, K., Emerson, J., Butt, Z., Gordon, E. J., Hanto, D. W., Perloff, J., Daniels, N., & Lavelle, T. A. (2018). How important is social support in determining patients’ suitability for transplantation? Results from a National Survey of Transplant Clinicians. Journal of Medical Ethics, 44(10), 666–674. https://doi.org/10.1136/medethics-2017-104695
Sharma, A., & Johnson, L.-M. (2019). Should Poor Social Support Be an Exclusion Criterion in Bone Marrow Transplantation? The American Journal of Bioethics, 19(11), 39–41. https://doi.org/10.1080/15265161.2019.1665736
Wall, A. (2019). The Qualitative Value of Social Support for Liver Transplantation. The American Journal of Bioethics, 19(11), 25–26. https://doi.org/10.1080/15265161.2019.1665748
DiMatteo, M. R. (2004). Social support and patient adherence to medical treatment: A meta-analysis. Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association, 23(2), 207–218. https://doi.org/10.1037/0278-6133.23.2.207
Dew, M. A., DiMartini, A. F., DeVito Dabbs, A. J., Fox, K. R., Myaskovsky, L., Posluszny, D. M., Switzer, G. E., Zomak, R. A., Kormos, R. L., & Toyoda, Y. (2012). Onset and risk factors for anxiety and depression during the first 2 years after lung transplantation. General Hospital Psychiatry, 34(2), 127–138. https://doi.org/10.1016/j.genhosppsych.2011.11.009