A Conceptual Framework of Palliative Care across the Continuum of Advanced Kidney Disease

Abstract

Kidney palliative care is a growing discipline within nephrology. Kidney palliative care specifically addresses the stress and burden of advanced kidney disease through the provision of expert symptom management, caregiver support, and advance care planning with the goal of optimizing quality of life for patients and families. The integration of palliative care principles is necessary to address the multidimensional impact of advanced kidney disease on patients. In particular, patients with advanced kidney disease have a high symptom burden and experience greater intensity of care at the end of life compared with other chronic serious illnesses. Currently, access to kidney palliative care is lacking, whether delivered by trained kidney care professionals or by palliative care clinicians. These barriers include a gap in training and workforce, policies limiting access to hospice and outpatient palliative care services for patients with ESKD, resistance to integrating palliative care within the nephrology community, and the misconception that palliative care is synonymous with end-of-life care. As such, addressing kidney palliative care needs on a population level will require not only access to specialized kidney palliative care initiatives, but also equipping kidney care professionals with the skills to address basic kidney palliative care needs. This article will address the role of kidney palliative care for patients with advanced kidney disease, describe models of care including primary and specialty kidney palliative care, and outline strategies to improve kidney palliative care on a provider and system level.

Keywords: ambulatory care; kidney palliative care; nephrology; outpatient care; palliative care; person-centered care; quality of life; renal supportive care; symptom management.

Figure 1.

AZ’s health and kidney palliative care trajectory illustrate an example of primary KPC and specialty KPC delivery to address kidney palliative care needs in advanced kidney disease. Kidney palliative care needs are represented on the vertical axis; time is represented on the horizontal axis. The dashed lines divide major periods along AZ’s health trajectory, which are identified at the top of the figure. Kidney palliative care skills and outcomes corresponding to kidney palliative care needs are identified for each period in AZ’s health trajectory. KPC, kidney palliative care; RLS, restless legs syndrome.