Surrogates' experiences of engaging in Physician Orders for Life-Sustaining Treatment discussions for persons with advanced dementia

Background and purpose: Little is known about surrogates' experiences of engaging in Physician Orders for Life-Sustaining Treatment (POLST) discussions. This study describes family surrogates' experiences when engaging in POLST discussions with primary care providers. Methods: Semistructured interviews were conducted with 10 family surrogates of individuals with advanced dementia who were enrolled in a Program of All-Inclusive Care for the Elderly or resided in a nursing home. Interviews were analyzed using directed content analysis based on the conceptual model of communication and surrogate decision making by Torke et al. Results and conclusion: Surrogates reported that clear explanations of clinical information and the opportunity to ask questions and reiterate what they heard were helpful in making treatment decisions. Moreover, surrogates reported feeling respected and understood when providers expressed concern for them or their family member with advanced dementia and asked them about their emotional responses to decision making. Although nine surrogates reported very positive communication with providers, one surrogate expressed discomfort with the interaction and described feeling pressured to make health care decisions. Implications for practice: With effective communication, family surrogates feel emotionally supported during communication and decision-making processes. Providers are encouraged to focus on developing expert communication skills for end-of-life care discussions.