RESUMEN
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.
Asunto(s)
Planificación Anticipada de Atención , Boston , Toma de Decisiones Clínicas , Muerte , Toma de Decisiones , Humanos , Calidad de VidaRESUMEN
PURPOSE: Advance directives (AD) have been heralded as vehicles to promote patient autonomy and have been decried as ineffective. Efforts to improve advance care planning (ACP) and AD documents are wide ranging but have not been prospectively studied. MATERIALS AND METHODS: In an institutional review board-approved, single-blind, randomized, controlled trial, we compared an interactive, educational ACP decision aid to standard ACP among patients with advanced cancer. We hypothesized that use of the decision aid would increase physician awareness of patients' health care wishes and increase physician adherence to patients' end-of-life wishes compared with standard ACP. RESULTS: A total of 200 patients were randomly assigned to two study arms. We analyzed data from medical records and interviews with physicians and family members for 121 patients who died by August 2016. No differences in physician awareness or adherence were found between the ACP decision aid and standard ACP groups. End-of-life treatment wishes and discussion of wishes were documented for 70% and 64% of the patients, respectively, but only 35% had an actual AD in the medical record. According to family members, end-of-life care was consistent with the patients' stated wishes 94% of the time. Similarly, according to physicians, it was consistent for 98%. However, according to AD documents, delivered care was consistent with desired care in only 65%. Considerably fewer patients than predicted died, and data from physicians were difficult to obtain. CONCLUSION: ACP type did not influence documentation of patient wishes or end-of-life care received. Future prospective studies must account for challenges in prognostication and point-of-care data collection at the end of life.