Wall, A. (2019). “The Qualitative Value of Social Support for Liver Transplantation.” Am J Bioeth 19(11): 25-26.
Full text of this article.
Last week, I had to respect the decision of my patient’s family to withdraw ventilatory support on a patient who was 3 months post liver transplant with a functional liver and a reversible disease process. Not only did we lose a completely salvageable patient, but we also lost the liver graft and we lost the opportunity to transplant a different patient who might have had a better outcome. This type of loss (salvageable patient with a functioning graft) is thankfully uncommon in liver transplantation, but when it happens, it leaves a mark on the entire team. We question what we could have done better to affect a different outcome and we relive all the decisions that led up to this ultimate decision to stop fighting for the life of the patient and the life of the graft. In this case, my team kept returning to the social-work evaluation and the decision that we made to push the limits of our social support criteria for post-transplant care. This patient’s family members all lived far away so his support consisted of a neighbor and paid nursing staff. After getting out of the hospital, the patient continually fired the nursing staff so there was always a different caregiver to communicate with. When the patient got readmitted for a complication, the neighbor came with him but had to leave to get back to his own work . . . One of the comments that Berry and colleagues make in their article is that if weakly supported patients are less able to manage the extreme demands of transplantation, which includes follow-up care, new medications, and the ongoing risk of organ rejection, then the use of social support criteria can be supported from a utilitarian standpoint. The extreme demands of liver transplantation are not the frequent clinic appointments or the medication regimens. Those are the standard requirements for routine postoperative care . . . The true extreme demands of liver transplantation happen to the minority of patients who have complicated postoperative courses, spend weeks to months in the intensive care unit, and have to build themselves back up from nothing through rehabilitation; learning to walk, talk, and eat again. These are the patients who need the strong emotional component of social support. They need their family and friends to be with them, encourage them, push them and support them through the intense recovery process. They also need adequate preoperative physical functioning and reserve, which is why frailty in liver transplantation has become such an important predictive tool. Frail patients who have severe complications do not have the physical reserve to rebound. Likewise, unsupported patients who have severe complications do not have the emotional support reserve to rebound . . . The evidence for social support is weak and is biased, as every program has some threshold for social support as a criterion for listing. While this commentary describes a single case, it is not a fluke. I would argue that every liver transplant surgeon can discuss a situation in which the lack of social support contributed in a real way to the loss of a patient after transplantation. I have been in practice for 1 year, and I can name five patients whose lack of social support significantly impacted their postoperative care, leading to complications, and in some cases death. On the other hand, I can name five patients who are alive and thriving today almost solely because of the support of their families and friends . . . While social support will always have subjectivity and will never be studied in a randomized control trial, it remains qualitatively important and should not be abandoned in the considerations for listing for liver transplantation. (Excerpts from text of this commentary, p. 25-26, which refers to a study in the same issue, Berry, K., N. Daniels, and K. Ladin. 2019. Should lack of social support prevent access to organ transplantation? The American Journal of Bioethics 19(11): 13–24.)