Background and objectives More than 90,000 patients with ESRD die annually in the United States, yet advance care planning (ACP) is underutilized. Understanding patients' and families' diverse needs can strengthen systematic efforts to improve ACP.Design, setting, participants, & measurements In-depth interviews were conducted with a purposive sample of patients and family/friends from dialysis units at two study sites. Applying grounded theory, interviews were audiotaped, professionally transcribed, and analyzed in an iterative process. Emergent themes were identified, discussed, and organized into major themes and subthemes.Results Thirteen patients and nine family/friends participated in interviews. The mean patient age was 63 years (SD 14) and five patients were women. Participants identified as black (n=1), Hispanic (n=4), Native American (n=4), Pacific Islander (n=1), white (n=11), and mixed (n=1). Three major themes with associated subthemes were identified. The first theme, "Prior experiences with ACP," revealed that these discussions rarely occur, yet most patients desire them. A potential role for the primary care physician was broached. The second theme, "Factors that may affect perspectives on ACP," included a desire for more of a connection with the nephrologist, positive and negative experiences with the dialysis team, disenfranchisement, life experiences, personality traits, patient-family/friend relationships, and power differentials. The third theme, "Recommendations for discussing ACP," included thoughts on who should lead discussions, where and when discussions should take place, what should be discussed and how.Conclusions Many participants desired better communication with their nephrologist and/or their dialysis team. A number expressed feelings of disenfranchisement that could negatively impact ACP discussions through diminished trust. Life experiences, personality traits, and relationships with family and friends may affect patient perspectives regarding ACP. This study's findings may inform clinical practice and will be useful in designing prospective intervention studies to improve patient and family experiences at the end of life.

Background and Objectives: Despite increasing attention to the use of Shared Decision-Making (SDM) in the Emergency Department (ED), little is known about ED patients’ perspectives regarding this practice. We sought to explore the use of SDM from the perspectives of ED patients, focusing on what affects patients’ desired level of involvement and what barriers and facilitators patients find most relevant to their experience. Methods: We conducted semi-structured interviews with a purposive sample of ED patients or their proxies at two sites. An interview guide was developed from existing literature and expert consensus, and based on a framework underscoring the importance of both knowledge and power. Interviews were recorded, transcribed and analyzed in an iterative process by a 3-person coding team. Emergent themes were identified, discussed, and organized. Results: Twenty-nine patients and proxies participated. The mean age of participants was 56 years (range 20 to 89), and 13 were female. Participants were diverse in regards to race/ethnicity, education, number of previous ED visits, and presence of chronic conditions. All participants wanted some degree of involvement in decision-making. Participants who made statements suggesting high self-efficacy and those who expressed mistrust of the healthcare system or previous negative experiences wanted a greater degree of involvement. Facilitators to involvement included familiarity with the decision at hand, physicians’ good communication skills, and clearly-delineated options. Some participants felt that their own relative lack of knowledge, compared to that of the physicians, made their involvement inappropriate or unwanted. Many participants had no expectation for SDM and although they did want involvement when asked explicitly, were otherwise likely to defer to physicians without discussion. Many did not recognize opportunities for SDM in their clinical care. Conclusions: This exploration of ED patients’ perceptions of SDM suggests that most patients want some degree of involvement in medical decision-making but more proactive engagement of patients by clinicians is often needed. Further research should examine these issues in a larger and more representative population.

ObjectivesShared decision-making (SDM) is receiving increasing attention in emergency medicine because of its potential to increase patient engagement and decrease unnecessary healthcare utilisation. This study sought to explore physician-identified barriers to and facilitators of SDM in the ED.MethodsWe conducted semistructured interviews with practising emergency physicians (EP) with the aim of understanding when and why EPs engage in SDM, and when and why they feel unable to engage in SDM. Interviews were transcribed verbatim and a three-member team coded all transcripts in an iterative fashion using a directed approach to qualitative content analysis. We identified emergent themes, and organised themes based on an integrative theoretical model that combined the theory of planned behaviour and social cognitive theory.ResultsFifteen EPs practising in the New England region of the USA were interviewed. Physicians described the following barriers: time constraints, clinical uncertainty, fear of a bad outcome, certain patient characteristics, lack of follow-up and other emotional and logistical stressors. They noted that risk stratification methods, the perception that SDM decreased liability and their own improving clinical skills facilitated their use of SDM. They also noted that the culture of the institution could play a role in discouraging or promoting SDM, and that patients could encourage SDM by specifically asking about alternatives.ConclusionsEPs face many barriers to using SDM. Some, such as lack of follow-up, are unique to the ED; others, such as the challenges of communicating uncertainty, may affect other providers. Many of the barriers to SDM are amenable to intervention, but may be of variable importance in different EDs. Further research should attempt to identify which barriers are most prevalent and most amenable to intervention, as well as capitalise on the facilitators noted.