Joshua A Rolnick1,2,3, Judy A Shea1, Joanna L Hart3,4, Scott D Halpern3,4. 1. 1 Division of General Internal Medicine, Department of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA. 2. 2 National Clinician Scholars Program, University of Pennsylvania, Philadelphia, PA, USA. 3. 3 Palliative and Advanced Illness Research Center, Department of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA. 4. 4 Division of Pulmonary, Allergy, and Critical Care Medicine, Department of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Abstract
BACKGROUND: Little is understood about the different ways patients complete advance directives (ADs), which is most commonly through lawyers and increasingly using websites. OBJECTIVE: To understand patients' perspectives on different approaches to facilitating AD completion, the value of legal regulation of ADs, and the use of a web-based platform to create an AD. DESIGN: Semi-structured interviews with patients. SETTING/PARTICIPANTS: We purposively sampled 25 patients at least 70 years of age or with a chronic disease from 2 internal medicine clinics. MEASUREMENTS: Interviews focused on experiences and perspectives creating ADs, including facilitation by lawyers, health-care professionals, and websites. Feedback on a website prototype was also obtained. Responses were analyzed with modified grounded theory until thematic saturation was achieved. RESULTS: Although a majority of participants with ADs had used lawyers, participants were ambivalent about the benefits of lawyer facilitation. Most valued both the medical perspective of a health-care professional and a lawyer's attention to legal requirements for AD validity. Participants had positive impressions of the web platform, but some were concerned about privacy with online storage. Trust emerged as an overarching theme, and participants valued legal regulation of ADs to ensure document authenticity and delivery of preference-concordant care. CONCLUSION: Efforts to improve documentation of care planning need to address the disparate methods by which participants complete ADs. Creating options that combine the perceived benefits of a legal approach with greater health professional involvement could appeal to participants. Privacy concerns may limit web use by some patients.
BACKGROUND: Little is understood about the different ways patients complete advance directives (ADs), which is most commonly through lawyers and increasingly using websites. OBJECTIVE: To understand patients' perspectives on different approaches to facilitating AD completion, the value of legal regulation of ADs, and the use of a web-based platform to create an AD. DESIGN: Semi-structured interviews with patients. SETTING/PARTICIPANTS: We purposively sampled 25 patients at least 70 years of age or with a chronic disease from 2 internal medicine clinics. MEASUREMENTS: Interviews focused on experiences and perspectives creating ADs, including facilitation by lawyers, health-care professionals, and websites. Feedback on a website prototype was also obtained. Responses were analyzed with modified grounded theory until thematic saturation was achieved. RESULTS: Although a majority of participants with ADs had used lawyers, participants were ambivalent about the benefits of lawyer facilitation. Most valued both the medical perspective of a health-care professional and a lawyer's attention to legal requirements for AD validity. Participants had positive impressions of the web platform, but some were concerned about privacy with online storage. Trust emerged as an overarching theme, and participants valued legal regulation of ADs to ensure document authenticity and delivery of preference-concordant care. CONCLUSION: Efforts to improve documentation of care planning need to address the disparate methods by which participants complete ADs. Creating options that combine the perceived benefits of a legal approach with greater health professional involvement could appeal to participants. Privacy concerns may limit web use by some patients.