Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD

Abstract

Despite continued advances in medical treatment, pediatric CKD remains an unremitting, burdensome condition characterized by decreased quality of life and earlier death. These burdens underscore the need for integration of pediatric palliative care (PPC) into nephrology practice. PPC is an evolving field that strives to (1) relieve physical, psychologic, social, practical, and existential suffering; (2) improve quality of life; (3) facilitate decision making; and (4) assist with care coordination in children with life-threatening or life-shortening conditions. Integration of palliative care into routine care has already begun for adults with kidney disease and children with other chronic diseases; however, similar integration has not occurred in pediatric nephrology. This review serves to provide a comprehensive definition of PPC, highlight the unmet need in pediatric nephrology and current integration efforts, discuss the state of palliative care in adult nephrology and analogous chronic pediatric disease states, and introduce future opportunities for study.

Keywords: chronic kidney disease; dialysis; end stage kidney disease; geriatric and palliative nephrology; kidney supportive care; pediatric nephrology; pediatric palliative care.

Figure 1.

Bow-tie model of palliative care integration in kidney disease. The bow-tie model highlights support of the patient and their family, concurrent with treatment of the disease, and the role of early integration of primary and/or subspecialty palliative care, while not diminishing the hope for survival. Dependent on patient and family goals, a range of complementary disease-targeted and palliative-focused care is available, with maximum (max) disease-targeted therapy represented by the top of the figure, and maximum conservative therapy represented by the bottom of the figure. Progression of the disease from diagnosis to realization of ultimate care goal is delineated from left to right. As the patient and their family move through their disease experience, their goals evolve, and kidney disease progresses, primary and subspecialty palliative care may take a larger role, ultimately with a transition toward kidney transplant and survivorship, or hospice and bereavement. Adapted from ref. (15), with permission.

Figure 2.

Conceptual model of pediatric palliative care (PPC) integration in nephrology utilizing a nephrologist with palliative care expertise. The domains of PPC should be addressed by the primary nephrologist and multidisciplinary team throughout the disease course, with the intensity of support individualized to the patient and family’s needs at that time in their care. A nephrologist with palliative care expertise is utilized at inflection points in care, when the patient and their family may experience significant changes in symptoms, experiences, burdens, and—ultimately—prognosis. With significant changes, goals of care may need to be revisited or revised, further reinforcing the benefit of additional PPC expertise. Although not every patient and family will experience each of these events, individualized inflection points of care may be identified that require additional burden alleviation. One example of an inflection point, where needs and burdens of patient and family can be more effectively addressed through integration of a nephrologist with palliative care expertise, includes diagnosis of CKD. The patient may already be experiencing resulting sleep disturbance. The patient and family may find it difficult to accept the diagnosis and feel grief that their hopes, goals, and dreams may be altered in the setting of CKD. Extensive questions about prognosis and care planning are likely. Another example of an inflection point that would benefit from integration of a nephrologist with palliative care expertise is at the time of transplant referral. A patient receiving a living, related kidney transplant may endorse emotional distress related to donation from a parent. The family may be anticipating significant financial burden associated with a parent’s donation, resulting in negative effects to the patient, parent, and siblings’ mental health and overall quality of life. Additionally, the patient and family may be overwhelmed with considering the potential complications of transplant, necessitating extra opportunities for patient- and family-centered communication. In both examples, the needs and burdens of the patient, and their family, can be more effectively met through enhanced palliative care provision by a nephrologist with PPC expertise.