Perceptions of Palliative Care Among Patients With Kidney Allograft Dysfunction: A Qualitative Study

Abstract

Rationale & Objective

Nearly half of kidney transplant recipients develop allograft failure within 10 years of transplantation and experience high mortality, significant symptom burden, and complex communication challenges. These patients may benefit from palliative care, but palliative care is infrequently provided in this population. This study explores palliative care perceptions and needs among patients with poorly functioning and declining kidney allografts.

Study Design

A qualitative study using semistructured interviews.

Setting & Participants

Adult kidney transplant recipients with a glomerular filtration rate of <20 mL/min/1.73m² followed at a single transplant center were interviewed from April 2022 to November 2022.

Analytical Approach

An interdisciplinary team, including nephrology, palliative care, and surgery, conducted a thematic analysis.

Results

Twelve participants (3 women, 9 men; 9 White, 2 Black, and 1 Hispanic patient) were interviewed. The median age of participants was 59 (IQR 48-73). At 6 months postinterview, 7 participants had resumed dialysis, 1 participant had been retransplanted, and 1 participant was deceased. Most participants had not heard of palliative care and those who had equated it with end-of-life care. Participants reported that emotional distress, particularly pervasive concern about the worsening of their kidney disease, was their most significant priority related to unmet palliative care needs. They also desired more discussion with their care team about future quality of life and lifespan. Participants described high trust in their transplant teams, suggesting that palliative care integration with these teams would be well-received.

Limitations

Limitations include recruitment from a single institution, lack of subject familiarity with palliative care, and limited racial and ethnic diversity among participants.

Conclusions

Patients with declining kidney allografts have heterogeneous, unmet palliative care needs, including emotional symptoms and a desire for better prognostic awareness. Our results suggest that patients are largely unaware of palliative care and may benefit from practice models in which transplant teams integrate palliative care education and timely palliative care engagement.

Plain-Language Summary

Nearly half of patients with kidney transplants experience failure of their transplant within a decade, leading to high mortality, significant symptoms, and communication challenges. Palliative care can help address these issues but is not frequently provided to these patients. We interviewed 12 patients whose kidney transplants were no longer working well to understand their perspectives on palliative care and palliative care needs. Most were unaware of palliative care but expressed openness to additional support. Their greatest, unmet palliative care needs were emotional distress and worry about the worsening of their kidney disease, and a desire to better understand their prognosis and future quality of life. Integrating palliative care into transplant care is crucial for addressing these patients’ needs.