Standardizing Palliative Care Referrals for Young Adults with Complex Congenital Heart Disease through Use of a Formal Needs Assessment.

Abstract

Although survival for adults with complex congenital heart disease (CHD) has greatly improved in recent years, early morbidity and mortality remain high compared to the general population. Palliative care, including primary and specialty palliative care, is recommended for many adults with complex CHD, particularly those with advanced heart disease (AHD), to improve overall quality of life and support a goal-concordant care plan. Despite this, regular integration of specialty palliative care for AHD has been challenging to implement, as there is no standardized outpatient model. Our objective was to establish a specialty palliative care clinic with identified referral criteria for young adults with complex CHD. We used the Center to Advance Palliative Care (CAPC) Community-Based Palliative Care Needs Assessment and Decision-Making Tool to identify a patient population, create structured surveys, and collect stakeholder input. We developed a referral process and created a combination in-person/telehealth clinic. We refined the referral criteria based on feedback from quarterly stakeholder meetings to include additional triggers for consultation. Three major themes were identified based on a total of five surveys and six interviews: (1) Adult Congenital Heart Disease (ACHD) programmatic growth provided an opportune time for collaboration, (2) young adults with single ventricle heart disease may benefit from specialty palliative care support, and (3) introducing palliative care was one of the biggest anticipated barriers to referral. Between July 2023 through December 2025, there were 41 completed referrals with average patient age of 32 years. Using a formal needs assessment tool, we successfully implemented standardized palliative care clinic referrals for adults with complex CHD.