Open Access

ARTICLE

Hospital resource utilization and presence of advance directives at the end of life for adults with congenital heart disease

Jill M. Steiner¹, James N. Kirkpatrick¹, Susan R. Heckbert², James Sibley³, James A. Fausto³, Ruth A. Engelberg³, J. Randall Curtis³

1 Division of Cardiology, School of Medicine, University of Washington, Seattle, Washington
2 Department of Epidemiology, School of Public Health, University of Washington, Seattle, Washington
3 Cambia Palliative Care Center of Excellence, University of Washington, Seattle, Washington

* Corresponding Author: Jill M. Steiner, Division of Cardiology, School of Medicine, University of Washington, 1959 NE Pacific St., HSB AA522, Box 356422, Seattle, WA 98196. Email:

Congenital Heart Disease 2018, 13(5), 721-727. https://doi.org/10.1111/chd.12638

Abstract

Objective: Overall health care resource utilization by adults with congenital heart disease has increased dramatically in the past two decades, yet little is known about utilization patterns at the end of life. The objective of this study is to better under‐ stand the patterns and influences on end‐of‐life care intensity for adults with con‐ genital heart disease.
Methods: We identified a sample of adults with congenital heart disease (n = 65), cancer (n = 10 784), or heart failure (n = 3809) who died between January 2010 and December 2015, cared for in one multi‐hospital health care system. We used multi‐ variate analysis to evaluate markers of resource utilization, location of death, and documentation of advance care planning among patients with congenital heart dis‐ ease versus those with cancer and those with heart failure.
Results: Approximately 40% of adults with congenital heart disease experienced in‐ patient and intensive care unit (ICU) hospitalizations in the last 30 days of life; 64% died in the hospital. Compared to patients with cancer, patients with adult congenital heart disease (ACHD) were more likely to have inpatient (adjusted risk ratio 1.57; 95% CI 1.12‐2.18) and ICU admissions in the last 30 days of life (adjusted risk ratio 2.56; 95% CI 1.83‐3.61), more likely to die in the hospital (adjusted risk ratio 1.75; 95% CI 1.43‐2.13), and more likely to have documentation of advance care planning (adjusted risk ratio 1.46; 95% CI 1.09‐1.96). Compared to patients with heart failure (HF), patients with ACHD were less likely to have an ICU admission in the last 30 days of life (adjusted risk ratio 0.73; 95% CI 0.54‐0.99).
Conclusions: Adults with congenital heart disease have significant hospital resource utilization near the end of life compared to patients with cancer, notable for more hospitalizations and a higher likelihood of death in the hospital. This population rep‐ resents an important opportunity for the application of palliative and supportive care.

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