Standardizing Palliative Care Referrals for Young Adults with Complex Congenital Heart Disease
A study published in the Journal of Pain and Symptom Management used CAPC's Community-Based Palliative Care Needs Assessment and Decision-Making Tool to establish standardized specialty palliative care referral criteria for young adults with complex congenital heart disease (CHD), a population where consistent palliative care integration has been challenging due to the absence of an established outpatient referral model. Through surveys and interviews, researchers found that young adults with single ventricle heart disease may particularly benefit from specialty palliative care support, and that clinician hesitancy around introducing palliative care was among the biggest anticipated barriers. The team developed a referral process and launched a combination in-person/telehealth clinic that completed forty-one referrals between July 2023 and December 2025, with an average patient age of thirty-two.