Patients with end-organ failure have significant palliative care needs because of high symptom burden, psychosocial distress, and increased healthcare utilization tied to a higher risk of mortality. Palliative care has been shown to improve quality of life and even survival when introduced early for patients with cancer1 and noncancer chronic illness.2 In contrast, palliative care remains inconsistently incorporated into the care for transplant candidates and recipients, despite complex and uncertain illness trajectories.3 Persistent barriers include workforce capacity, misconceptions that palliative care is incompatible with transplant intent, variable training of clinicians, and nonlinear, often unpredictable clinical course of advanced organ failure. Notably, in heart transplantation, routine palliative care is required by the Centers for Medicare and Medicaid Services during mechanical circulatory support evaluation. This has facilitated earlier alignment around goals of care, including bridge and/or destination therapy, which helps avoid nonbeneficial interventions. However, for most other solid organ transplants, bridging interventions are limited. Thus, the optimal timing and role of palliative care is poorly defined, especially because of logistic and cultural barriers. Although solid organ transplantation could offer improved survival and quality of life, it is accompanied by significant uncertainty and distress throughout the care continuum. Across organ types, patients experience substantial symptom burden and psychosocial stress as they navigate through the transplant evaluation, waitlisting, and postoperative recovery. Despite often being framed as a cure, solid organ transplantation more accurately is the transition to another chronic illness. The transplant journey involves lifelong immunosuppression, fear of rejection and complications, continued symptom and medication burden, and ongoing financial strain. In this respect, transplant survivorship closely parallels cancer survivorship and requires comparable attention to longitudinal supportive care.4 Recognizing transplant as an ongoing journey rather than a discrete intervention is essential to understanding the unmet palliative needs in this population. In this issue, Kenaston et al5 systematically investigated patterns of palliative care utilization across heart, lung, liver and kidney transplants (n = 12 676) within the Mayo Clinic enterprise. Using retrospective data from the peritransplant period (<1 y before admission, during the index transplant admission, and <1 y after discharge), the authors identified considerable variability in the timing of palliative care engagement across organs. Overall utilization rate was low, with an average rate of only 8.3%. Importantly, patients who received palliative care before transplant experienced lower morbidity and reduced healthcare utilization. They also had improved survival compared with those who received palliative care only after transplant. These findings highlight both the rarity of early palliative involvement and its potential clinical relevance. Variation in the timing and extent of palliative care involvement across organs reflects the fundamental heterogeneity of transplant patients and care pathways. For example, waitlisting processes and organ allocation frameworks differ significantly by organ, which play a major role in peritransplant symptom and psychosocial burden. Waitlisting for heart and liver transplants are more acuity-based, whereas kidney and lung transplants are influenced by wait time and residual organ function. In addition, institution- and clinician-level practice variation could further contribute to the observed differences in palliative care utilization. Furthermore, the retrospective, diagnosis code-based analysis limits insights into patient-level healthcare utilization details. The frequency and outcomes of the palliative care visits were not detailed, and any transition of care (ie, from transplant waitlist to hospice) could confound data regarding emergency department and hospital utilization. The analysis also did not account for the clinical context that certain organ transplants may require more time in the intensive care unit and postsurgery procedures. These limitations preclude causal inference and highlight the complexity of interpreting utilization and outcome associations across organ types. Despite these limitations, what is exceptionally clear from this article is that there is a substantial unmet need for integrated palliative care along the transplant journey regardless of organ type.6-9 This study serves as a large, multiorgan “needs assessment,” highlighting the potential benefits of earlier palliative engagement. Currently, as described by the authors, palliative care is most often used as a reactive intervention, following clinical deterioration, rather than proactively as a part of longitudinal care. The observed associations between earlier palliative care involvement and improved outcomes challenge this paradigm and invite reconsideration of when and how palliative care is introduced in transplant populations. Screening tools proposed by the authors, although currently not organ-specific, represent an excellent pragmatic step toward identifying high-risk patients earlier in the disease course. Future efforts should build on a clear understanding of current practice patterns by thoughtfully expanding access to palliative care along the transplant journey. Embedding palliative care principles into the transplant evaluation workflow, particularly through early, value-focused conversations, may help normalize its role independent of listing decisions. For transplant candidates and recipients, palliative care should also be delivered as a longitudinal process and can be delivered by any provider. Transplant and organ-specific clinicians (eg, nephrologists, hepatologists), or anyone who has a longitudinal relationship with patients, are well positioned to integrate palliative care principles into the plan of care. This mitigates workforce limitations at both high and low resource systems where palliative care specialists may not be as available. As integration evolves, bidirectional education between transplant and palliative care clinicians will be essential; for palliative care, clinicians to learn the nuances of certain decompensated disease processes or transplant protocols, and for transplant, clinicians to be able to comfortably address symptom burden in end-stage organ failure and discuss goal-concordant care.10 This can also be more effective with organ-specific screening tools that identify patients who are at high risk. These interventions warrant further studies to better define effective, scalable models of palliative care delivery in transplantation. Much work remains, and we are in a critical inflection point in taking the long view and advancing palliative care along the transplant journey.
Shah et al. (Thu,) studied this question.