Adding life to their years: The current state of pediatric palliative care in CKD,” by House and Wightman, calls pediatric nephrologists to action for the integration of palliative care into their practice. In an effort to distinguish palliative care from being inappropriately conflated with “end-of-life care,” the rebranding of the nephology-palliative care integration has already occurred in adult nephrology, highlighting the ability of palliative care to be delivered alongside CKD care (1).
By highlighting the effects of pediatric CKD on the child and family unit, the authors describe some challenges similar to adult CKD care, including adverse effects on health-related quality of life and increased symptom burden, as well as the unique needs of children, including subsequent transplants, detrimental effects on well-being, financial stress, and anxiety experienced by siblings and parents. Integration of palliative care into other pediatric chronic illnesses has proven valuable, with improved psychosocial outcomes in oncology; physical and psychological symptoms in patients with cystic fibrosis; and maternal anxiety in children with hypoplastic left heart syndrome. It is time for pediatric nephrologists to spearhead this integration for their patients as well. Continued exposure in fellowship and continuing education can increase pediatric nephrologists' familiarity with primary palliative care skills, including basic symptom management, communication, and incorporation of the patient's perspective in shared decision-making. More complex care needs of patients and families should prompt consultation with specialist palliative care providers, social workers, psychologists, and child life specialists. Similar to the adult integration of nephrology and palliative care (Table 1), the most effective way to deliver this integrated care remains as yet undefined, but through conscious efforts and research, this model can be better delineated to best “add life to the child's years, not simply years to the child's life.”
House TR, Wightman A. Adding life to their years: The current state of pediatric palliative care in CKD. Kidney360 April 2021. doi: 10.34067/KID.0000282021; https://doi.org/10.34067/KID.0000282021