Clinician Perspectives on Barriers to Use of Palliative Care among Patients with Failing Kidney Allografts

Patients who have undergone kidney transplant and have failing grafts experience significant medical, social, and psychological distress (1, 2). Distress caused by serious illness is often targeted by palliative care specialists, whose interventions improve quality of life and symptom burden during a life-limiting illness (3). Although clinician attitudes toward palliative care in lung, heart, and liver transplant settings have been explored (4–6), kidney transplant is unique in multiple ways that may affect perspectives on the use of palliative care. For one example, graft failure does not necessarily correspond to end of life given the availability of hemodialysis; for another example, patients with minimal graft function may be relatively asymptomatic for a long period of time.

An article recently published in the American Journal of Kidney Diseases (7) examined clinicians’ perspectives on palliative care for patients with failing kidney allografts to elucidate patterns of use and barriers to use of palliative care. The mixed-methods study included a survey plus semi-structured interviews and targeted all members of the transplant team, providing helpful, multidisciplinary insight.

Overall, clinicians acknowledged under-use of palliative care services. Although the vast majority appreciated the benefit of palliative care and trusted colleagues in that field, 61% would only consult palliative care near the end of life, and only 19% referred patients to outpatient palliative care. Clinicians’ comments revealed barriers to palliative care involvement at multiple levels (Figure 1).

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Clinician perceptions of barriers to use of palliative care among patients with failing kidney allografts

Citation: Kidney News 16, 2

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Perceived barriers to palliative care at the patient level included the belief that patients would not want to have serious illness conversations; clinicians believed that patients would feel scared or anxious, like they were giving up, or depressed if palliative care was discussed. Importantly, these were clinicians’ perceptions of patient preferences, not patients’ own concerns, and in other settings, patients have been shown to value the information revealed by difficult conversations (8). Clinicians also worried that referral to palliative care would cause patients to think that their transplant clinician was abandoning or “giving up on” them. It would be interesting to explore whether re-initiation of dialysis with transfer to a dialysis care team would elicit the same concerns.

At the clinician level, barriers included clinicians’ beliefs about the role of transplant as life-prolonging: 41% thought the goals of transplant and palliative care were contradictory, given that palliative care focuses on quality rather than length of life. This also suggests persistence of a common misconception: that involvement of palliative care requires cessation of curative or life-prolonging therapies. Another barrier was clinician discomfort with communicating the purposes of palliative care to patients with diverse language and cultural backgrounds. This obstacle requires urgent attention. Although clinicians appropriately recognized the distinct needs of diverse populations, inadequate training about how to meet those needs exacerbates the inequities that clinicians intended to address.

At the systems level, transplant clinicians also found challenging the lack of standardization in criteria for palliative care referral, which led to uncertainty about whether and when to refer patients. In addition, limited care coordination between transplant and palliative care services was a barrier, as it required patients to be referred separately for palliative care and to establish relationships with new clinicians. Clinicians also felt that external pressures related to 1-year post-transplant survival metrics, which affect transplant centers’ funding and certification (9), created a disincentive to refer some patients to palliative care.

These findings highlight a need for patient and clinician education on the roles of palliative care beyond end-of-life care as well as a need for expansion and integration of palliative care into transplant services. Given the unique elements of kidney graft failure, the most useful roles for palliative care teams may include counseling on prognoses, goals-of-care discussions, and management of psychosocial distress rather than end-of-life care or symptom management. The next steps should include solicitation of patient perspectives, which may help dismantle the patient-level barriers that clinicians perceived. Nephrology transplant training programs and their accrediting bodies may also consider incorporation of existing palliative care training initiatives (10, 11), creation of palliative care-related clinical competencies, and addition of relevant questions to certifying exams. This may improve transplant clinicians’ familiarity with the wide range of possible roles for palliative care among patients with failing allografts.