Journal of palliative medicine
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Background: Surrogate decision makers are required to make difficult end-of-life decisions with little preparation. Little is known about what surrogates may need to adequately prepare for their role, and few resources exist to prepare them. Objective: To explore experiences and advice from surrogates about how best to prepare for the surrogate role. ⋯ Five themes and advice were identified: (1) lack of, but needing, surrogates' own preparation and guidance (2) initiate ACP conversations, (3) learn patient's values and preferences, (4) communicate with clinicians and advocate for patients, and (5) make informed surrogate decisions. Conclusion: Experienced surrogate decision makers emphasized the importance of ACP and advised that surrogates need their own preparation to initiate ACP conversations, learn patients' values, advocate for patients, and make informed surrogate decisions. Future interventions should address these preparation topics to ease surrogate burden and decrease disparities in surrogate decision making.
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Background: The Serious Illness Care Program has been shown to improve quality and feasibility of value-based end-of-life conversations in primary care. Objectives: To elicit patients' perspectives on serious illness conversations conducted by primary care clinicians. Subjects and Methods: Telephone interviews were conducted with patients at an academic center in the United States, who had a recent serious illness conversation with their primary care clinician. ⋯ We identified three major themes: (1) positive emotional experiences are facilitated by established patient-clinician relationships and/or clinicians' skills in navigating emotional challenges, (2) patients appreciate a personalized conversation, and (3) clinicians should orchestrate the experience of the conversation, from preparation through follow-up. Conclusion: Patients appreciate having serious illness conversations in the primary care setting. Future efforts can be focused on improving clinicians' skills in navigating emotional challenges during conversations and implementing system changes to optimize orchestration.
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Background: Surrogates and physicians may differ in their priorities and perspectives when making decisions for incapacitated, critically ill patients. Objectives: To determine the extent to which surrogate and physician decisions to sustain life support are associated with their expectations for patient outcomes. Setting/Subjects: Surrogates and physicians of 100 mechanically ventilated patients at an academic, tertiary care medical center in the United States were surveyed. ⋯ In contrast, among physicians, confidence was not synonymous with optimism. Instead, the significant associations between expectations for patient survival and good quality of life with the agreement that mechanical ventilation should be continued were strengthened when physicians were confident, (R2 = 0.34, p < 0.01) and (R2 = 0.47, p < 0.001), respectively. Conclusion: Surrogates and physicians have different approaches to incorporating their expectations for patient prognosis and their confidence in these expectations when they are making decisions for incapacitated critically ill patients.