@Article{chd.12638,
AUTHOR = {Jill M. Steiner, James N. Kirkpatrick, Susan R. Heckbert, James Sibley, James A. Fausto, Ruth A. Engelberg, J. Randall Curtis},
TITLE = {Hospital resource utilization and presence of advance directives at the end of life for adults with congenital heart disease},
JOURNAL = {Congenital Heart Disease},
VOLUME = {13},
YEAR = {2018},
NUMBER = {5},
PAGES = {721--727},
URL = {http://www.techscience.com/chd/v13n5/39051},
ISSN = {1747-0803},
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.},
DOI = {10.1111/chd.12638}
}