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

Congenital Heart Disease, Vol.13, No.5, pp. 721-727, 2018, DOI: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… More >

Jill M. Steiner¹, Karen Stout¹, Laurie Soine¹, James N. Kirkpatrick¹, J. Randall Curtis²

Congenital Heart Disease, Vol.14, No.3, pp. 403-409, 2019, DOI:10.1111/chd.12735

Abstract Background: Patients with adult congenital heart disease (ACHD) report that ad‐ vance care planning (ACP) is important, and that they want information about prog‐ nosis. However, recognizing importance and being willing to participate are different constructs, and how and when to begin ACP and palliative care discussions remains ill‐defined.
Methods: We conducted a cross‐sectional survey of 150 consecutive outpatients to assess willingness to participate in ACP, with whom, and important barriers and facili‐ tators to these discussions.
Results: The majority of participants (69%) reported being willing to participate in ACP; 79% to have a meeting to discuss goals and care… More >