I see in the news that organ transplant centers have removed a few patients from wait lists because they refuse COVID-19 vaccines. It may seem odd, but this reminds me of an even more difficult situation in organ transplantation. What do you do about those who just refuse organ transplant altogether?
I used to be a psychiatric consultant and that meant providing psychiatric consultations to the organ transplant service as well.
As anyone can imagine, refusing a transplant is uncommon. But it happens.
There are strong contraindications to transplant, among them severe psychiatric illness, medical noncompliance, absent social support, and active substance use.
There are not enough organs to go around. Many transplant candidates die every year while on the waiting list. Graft survival rates are usually shorter than survival rates, meaning some patients will need more than one transplant.
This means that selection criteria for candidates must be fair and realistic. More than 95% of transplant programs require psychosocial evaluations. There are usually not enough transplant psychiatrists to do this so a team approach is used in which social workers, nurse practitioners, psychologists, substance use disorders experts, and psychiatric consultants collaborate.
While it can be unsettling to remove a patient from the wait list, few people outside of the transplant center realize it can be even more upsetting to hear a patient say “no” to transplant. In all cases, the patient’s life probably has been saved many times. Often, all members of the team have invested a great deal of emotional energy to keeping the patient in the game.
There is also another incentive for transplant centers which must, in all fairness, be acknowledged. The government requires centers to do a certain number of transplant surgeries a year to retain their transplant Medicare certification. The procedure itself costs hundreds of thousands of dollars.
One typical letter from a transplant center can look like this:
“…specific outcome requirements must be met by transplant centers as outlined by the Centers for Medicare and Medicaid Services. Programs are required to notify their patients if these requirements are not met. Currently, Hospital X meets all requirements for transplant centers.”
There is a report by the Scientific Registry of Transplant Recipients (SRTR) which updates transplant statistics for all transplant programs. Anyone can look at the numbers.
This can become a point of pride and possibly some competition between centers. The older reference below is an example:
“Does Competition Among Transplant Centers Lead to Efficient Organ Allocation?” Scanlon D, Ubel PA, Loh E; Academy for Health Services Research and Health Policy. Meeting. Abstr Acad Health Serv Res Health Policy Meet. 2001; 18: 17. Short answer is-probably not, rather leads to inappropriate listing.
This means that an ethics consultation would be a good idea in many complicated organ transplant cases. The University of Washington has a “4 Boxes” tool that I used as a guide for years. The contextual features box merits close examination.
Anyhow, the patient who outright refuses transplant presents the transplant team with a singular question. Does this patient want to die? Usually that triggers a call to the psychiatric consultant. My role as an interdisciplinary collaborator was to focus on identifying psychosocial challenges to address in order to maximize postoperative chances of successful outcomes. That sentence was from the team’s perspective. However, my real goal was to listen to the patient and try to understand. In fact, I had a dual role. My main role, from the point of view of the transplant team, was to enhance the suitability of the patient for transplant—from a psychiatric standpoint.
It was never that easy, especially when the patient didn’t want a transplant. Suitability was out the window. Also, there are more or less discrete phases of transplant.
The Evaluation Phase in which the patient is usually very sick, faced with a terminal illness, and eager to be transplanted.
The Waiting for Donor Phase, often a very stressful time, frequently marked by demoralization as others get transplanted sooner.
The Surgery and Postop Course Phase, which could be marked by difficulty accepting the new organ, fantasies about the life and death of the donor, and fear that one will take on the traits or identity of the donor.
Prior to coming up on the wait list, some factors which may influence transplant refusal:
- Depression or grief
- Delirium and dementia
- Fear of transplant surgery or negative past experiences with surgeries
- Concerns about postop quality of life
- Ambivalence about surgery and/or survival
- Acceptance of inevitability of death
- Frierson, R. L., J. B. Tabler, et al. (1990). “Patients who refuse heart transplantation.” J Heart Transplant 9(4): 385-91.
Ambivalence is one factor that has been studied. It has been described as the tension between the wish for an extended life for which transplant holds out a promise as contrasted with the:
- Need to confront the desperate seriousness of their situation
- Need to fathom undergoing an operation which will remove the very organ physically and symbolically sustaining life
- Need to accept postop quality of life that could be less than acceptable because of the amount of suffering it could inflict
- Difficulty facing seriousness of situation
- Fear of the surgery
- Quality of life concerns
The tasks for the patients:
- Realize they have a terminal illness
- Accept the idea that a transplant is necessary to preserve life
- Endure the uncertainty about acceptance or rejection for transplantation
- Assimilate an enormous amount of information in a short period of time
- Emotionally reinvest in the possibility of an extension of their lives
Even the normal person feels, as it were, two souls in his breast.”E. Bleuler
How would this be addressed in a busy transplant center intent on saving lives and retaining certification?
Ironically, by acknowledging that refusal of transplant is an acceptable choice. Ambivalence is not necessarily a sign of mental illness. It’s probably fine to avoid trying to talk the patient into going ahead with the transplant. You can see that the psychiatric consultant is supposed to be the advocate for the patient, not necessarily always for the transplant team.
Try to help the transplant team tolerate their own emotional turmoil as well as the patient’s. Try to create a space in which the transplant team can debrief and grieve those “who choose not to be saved.”
- Frierson, R.L., et al., Patients who refuse heart transplantation. J Heart Transplant, 1990. 9(4): p. 385-91.
- Kuhn, W.F., B. Myers, and M.H. Davis, Ambivalence in cardiac transplantation candidates. Int J Psychiatry Med, 1988. 18(4): p. 305-14.
Stay in the chair.