David B Simmons1,2, Benjamin H Levi3,4,5,6, Michael J Green2,3,4,5, In Seo La7, Daniella Lipnick3, Theresa J Smith3, Elizabeth R Thiede8, Debra L Wiegand9, Lauren Van Scoy2,3,4,5,10. 1. Department of Pastoral Care, Penn State Milton S. Hershey Medical Center, Hershey, PA. 2. Department of Medicine, Penn State College of Medicine, Hershey, PA. 3. Penn State College of Medicine, Hershey, PA. 4. Penn State Milton S. Hershey Medical Center, Hershey, PA. 5. Department of Humanities, Penn State College of Medicine, Hershey, PA. 6. Department of Pediatrics, Penn State Milton S. Hershey Medical Center, Hershey, PA. 7. College of Nursing Science, Kyung Hee University, Seoul, South Korea. 8. Penn State College of Nursing, Penn State University, State College, PA. 9. University of Maryland-Baltimore Department of Nursing, Baltimore, MD. 10. Department of Public Health Sciences, Penn State College of Medicine, Hershey, PA.
Abstract
BACKGROUND: The goal of advance care planning (ACP) is to improve end-of-life decision-making for patients and their spokespersons, but multiple studies have failed to show substantial or consistent benefit from ACP. Understanding how and why ACP under-performs in the setting of complex medical decision-making is key to optimizing current, or designing new, ACP interventions. AIM: To explore how ACP did or did not contribute to a spokespersons' understanding of patient wishes after engaging in ACP. DESIGN: Thematic analysis of 200 purposively sampled interviews from a randomized control trial of an ACP decision aid. SETTING/PARTICIPANTS: 200 dyads consisting of patients 18 years or older with advanced serious illness and their spokesperson at 2 tertiary care centers in Hershey, PA and Boston, MA. Participants were interviewed 1 month after completing ACP. RESULTS: ACP helped participants: 1) express clear end-of-life wishes, 2) clarify values, and 3) recognize challenges associated with applying those wishes in complex situations. Shortcomings of ACP included 1) unknown prognostic information or quality-of-life outcomes to inform decision-making, 2) skepticism about patients' wishes, and 3) complicated emotions impacting end-of-life discussions. CONCLUSIONS: Helping patients and their spokespersons better anticipate decision-making in the face of prognostic and informational uncertainty as well as the emotional complexities of making medical decisions may improve the efficacy of ACP interventions.
BACKGROUND: The goal of advance care planning (ACP) is to improve end-of-life decision-making for patients and their spokespersons, but multiple studies have failed to show substantial or consistent benefit from ACP. Understanding how and why ACP under-performs in the setting of complex medical decision-making is key to optimizing current, or designing new, ACP interventions. AIM: To explore how ACP did or did not contribute to a spokespersons' understanding of patient wishes after engaging in ACP. DESIGN: Thematic analysis of 200 purposively sampled interviews from a randomized control trial of an ACP decision aid. SETTING/PARTICIPANTS: 200 dyads consisting of patients 18 years or older with advanced serious illness and their spokesperson at 2 tertiary care centers in Hershey, PA and Boston, MA. Participants were interviewed 1 month after completing ACP. RESULTS: ACP helped participants: 1) express clear end-of-life wishes, 2) clarify values, and 3) recognize challenges associated with applying those wishes in complex situations. Shortcomings of ACP included 1) unknown prognostic information or quality-of-life outcomes to inform decision-making, 2) skepticism about patients' wishes, and 3) complicated emotions impacting end-of-life discussions. CONCLUSIONS: Helping patients and their spokespersons better anticipate decision-making in the face of prognostic and informational uncertainty as well as the emotional complexities of making medical decisions may improve the efficacy of ACP interventions.
Entities:
Keywords:
advance care planning; advance directives; advanced illness; autonomy; medical decision making; surrogate decision making
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