Single-Center Experience Providing Palliative Care to Pediatric Patients with End-Stage Renal Disease

Abstract

This study demonstrates one institution's experience with pediatric ESRD patients undergoing consultation with the pediatric palliative care service. More research is necessary in this population to better describe the best focus for palliative care teams.

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

“…In a single center analysis, Keefer et al found fewer than half of specialist PPC consults for children with ESKD were requested by the nephrology service. 54 In a survey of multidisciplinary nephrology care team members, Thumfart et al found respondents identified a need for increased PPC resources but disagreed about which patients should routinely receive subspecialty PPC. 55 Both studies reinforce the need for integration of primary and subspecialty PPC in pediatric nephrology but highlight that nephrologists as stakeholders may be unsure how best to meet this need.…”

“…Efforts must focus on nephrologists, as well as palliative care specialists, transplant surgeons, and other multidisciplinary team members. 11,12,23,54,55 In addition to continued study of burden, pain, HRQoL, and other outcomes, allowing patients and families to share experiences "in their own words," through qualitative research may provide the most persuasive means of achieving clinician recognition. 79 There is a need to further develop PPC capacity.…”

Pediatric Palliative Care in the Perioperative Period

“…Similarly, in a single site review of palliative care for children with end-stage renal failure on dialysis, known to have a very poor quality of life, the authors reported found a high level of emotional distress, concerns about the risks of undergoing and waiting for a renal transplant, and the family's acknowledgement that even a successfully transplanted kidney has a limited lifespan. The Renal Physicians Association recommends a palliative care plan for all pediatric patients with ESRD, but this recommendation has been difficult to implement on a national basis [22].…”

Supportive palliative care should be integrated into routine care for paediatric patients with life‐limiting kidney disease

“…As in all chronic paediatric diseases, the early integration of palliative care is essential to cover the whole spectrum of possible outcomes of childhood ESRD. This forward planning provides patients and their families with medical care and psychosocial solutions that are embedded into the course of the disease for each individual .…”