From The Chair

March 2014

Can Palliative Care Solve the Problem of Providing Complex Chronic Care for Children and Youth With Special Health Care Needs (CYSHCN)? Should it?

The medical home model for pediatrics is predicated on the logic that pediatricians who know their patients’ health care needs best are in the position to orchestrate and provide the multiple levels of primary, specialty, rehabilitative, and supportive care necessary to meet the needs of CYSHCN and their families.[1] As pediatricians continue to evolve their practices and construct functional medical homes, there remain challenges in addressing those children and youth who are often in and out of tertiary children’s specialty hospitals, subspecialty clinics and numerous rehabilitative and supportive care clinicians’ offices. Across the age spectrum, perhaps as many as 10 million children in the US have “special health care needs” and many may not be in receipt of all of the services they need.[2]

What portion of these children might stand to benefit from the attention and follow-up of an interdisciplinary palliative care team? How many medical homes utilize palliative care services? Further, when CYSHCN are seeking acute care, might such a visit present a timely opportunity to make such a referral or serve as a touch-point for those already being followed by palliative care?

The utility in providing robust services to CYSHCN in the medical home might be worthy of study in local settings as pediatric palliative care teams work to find acceptance and demonstrate value in acute care settings. Certainly, these children often fail to obtain the services they need across many chronic care settings – be they premature, managed on home tracheostomy or assisted ventilation, or with conditions such as spina bifida, cystic fibrosis or cerebral palsy.[3] And some evidence exists to support the idea that pediatricians might be more inclined to increase the number of CYSHCN in their practices if they had additional supports.[4]

In the acute care children’s hospital with a palliative care service, what role might be played to enhance or enrich the medical home? If the de facto medical home appears to be the multispecialty clinics in a children’s hospital, and the primary pediatrician’s role is diminished, should the palliative care service assume some overarching coordinating role? Should it be the voice of continuity and advocacy for the “whole child” and knit together what might otherwise be fragmented organ or disease-specific care? Should it partner with primary care providers to enhance their ability to coordinate care? The answers to these questions will certainly require further deliberation, and most likely be determined by contributions from hospital leadership, community pediatricians and state AAP chapters, potential payers and advocates for children – both parents and professionals. I invite you to this conversation.


Brian Carter, MD, FAAP


  1. McPherson M, et al. A new definition of children with special health care needs. Pediatrics 1998;102:137-40.
  2. National Center for Medical Home Implementation – accessed at:
  3. Conrey EJ, et al. Access to patient-centered medical home among Ohio’s Children with Special Health Care Needs. J Child Health Care 2012;17(2):186-96.
  4. Agrawal R, et al. The capacity of primary care pediatricians to care for Children with Special Health Care Needs. Clin Pediatr 2013;52(4):310-14.