Presence and Content of Goals-of-Care Documentation for Patients With Adult Congenital Heart Disease at End-of-Life

Patients with adult congenital heart disease (ACHD) are prone to various health challenges and premature death. Palliative care needs have been demonstrated, yet little is known about patients' goals of care (GOC) near end-of-life.

The aim of this study was to describe the presence and content of GOC documentation in the electronic health record for patients with ACHD at the end-of-life.

We conducted a retrospective study of decedent patients with moderate or complex ACHD who received care from 2010 to 2021. Study team members manually reviewed electronic health records created within patients' last 6 months of life for the presence and content of GOC documentation.

Of the 114 patients included, 57 (50%) had at least one GOC discussion documented within the last 6 months of life from 544 total notes. Palliative care consultation notes occurred within the last 6 months of life for 36 (32%) patients. Presence of GOC discussion documentation within the last 6 months of life was associated with risk of in-hospital death (OR: 2.58; 95% CI: 1.19-5.61; P = 0.017), diagnosis of heart failure (OR: 3.57; 95% CI: 1.42-8.97; P = 0.007), and later era (2017-2021) (OR: 3.20; 95% CI: 1.48-6.91; P = 0.003). Qualitatively, patients were split between wishing to be comfortable at home vs prolonging life with aggressive treatment.

GOC documentation for patients with ACHD near end-of-life is suboptimal, yet when present contains information about patients' wishes. Future work should promote early GOC discussion and enhanced documentation to guide clinical care in this population.