Background Structurally marginalized groups experience disproportionately low rates of advance care planning (ACP). To improve equitable patient-centered end-of-life care, we examine barriers and facilitators to ACP among clinicians as they are central participants in these discussions. Methods In this national study, we conducted semi-structured interviews with purposively selected clinicians from six diverse health systems between August 2018 and June 2019. Thematic analysis yielded themes characterizing clinicians’ perceptions of barriers and facilitators to ACP among patients, and patient-centered ways of overcoming them. Results Among 74 participants, 49 (66.2%) were physicians, 16.2% were nurses, and 13.5% were social workers. Most worked in primary care (35.1%), geriatrics (21.1%), and palliative care (19.3%) settings. Clinicians most frequently expressed difficulty discussing ACP with certain racial and ethnic groups (African American, Hispanic, Asian, and Native American) (31.1%), non-native English speakers (24.3%), and those with certain religious beliefs (Catholic, Orthodox Jewish, and Muslim) (13.5%). Clinicians were more likely to attribute barriers to ACP completion to patients (62.2%), than to clinicians (35.1%) or health systems (37.8%). Three themes characterized clinicians’ difficulty approaching ACP (Preconceived views of patients’ preferences; narrow definitions of successful ACP; lacking institutional resources), while the final theme illustrated facilitators to ACP (Acknowledging bias and rejecting stereotypes; mission-driven focus on ACP; acceptance of all preferences). Conclusions Most clinicians avoided ACP with certain racial and ethnic groups, those with limited English fluency, and persons with certain religious beliefs. Our findings provide evidence to support development of clinician-level and institutional-level interventions and to reduce disparities in ACP.
BackgroundOlder patients with advanced CKD are at high risk for serious complications and death, yet few discuss advance care planning (ACP) with their kidney clinicians. Examining barriers and facilitators to ACP among such patients might help identify patient-centered opportunities for improvement.MethodsIn semistructured interviews in March through August 2019 with purposively sampled patients (aged ≥70 years, CKD stages 4–5, nondialysis), care partners, and clinicians at clinics in across the United States, participants described discussions, factors contributing to ACP completion or avoidance, and perceived value of ACP. We used thematic analysis to analyze data.ResultsWe conducted 68 semistructured interviews with 23 patients, 29 care partners, and 26 clinicians. Only seven of 26 (27%) clinicians routinely discussed ACP. About half of the patients had documented ACP, mostly outside the health care system. We found divergent ACP definitions and perspectives; kidney clinicians largely defined ACP as completion of formal documentation, whereas patients viewed it more holistically, wanting discussions about goals, prognosis, and disease trajectory. Clinicians avoided ACP with patients from minority groups, perceiving cultural or religious barriers. Four themes and subthemes informing variation in decisions to discuss ACP and approaches emerged: (1) role ambiguity and responsibility for ACP, (2) questioning the value of ACP, (3) confronting institutional barriers (time, training, reimbursement, and the electronic medical record, EMR), and (4) consequences of avoiding ACP (disparities in ACP access and overconfidence that patients’ wishes are known).ConclusionsPatients, care partners, and clinicians hold discordant views about the responsibility for discussing ACP and the scope for it. This presents critical barriers to the process, leaving ACP insufficiently discussed with older adults with advanced CKD.
Background Although advance care planning (ACP) for persons with dementia (PWD) can promote patient‐centered care by aligning future healthcare with patient values, few PWD have documented ACPs for reasons incompletely understood. The objective of this paper is to characterize the perceived value of, barriers to, and successful strategies for completing ACP for PWD as reported by frontline clinicians. Methods Qualitative study using semi‐structured interviews (August 2018–December 2019) with clinicians (physicians, nurse practitioners, nurses, social workers) at 11 US health systems. Interviews asked clinicians about their approaches to ACP with PWDs, including how ACP was initiated, what was discussed, how carepartners were involved, how decision‐making was approached, and how decision‐making capacity was assessed. Results Of 75 participating generalist and specialty clinicians from across the United States, 61% reported conducting ACP with PWD, of whom 19% conducted ACP as early as possible with PWD. Three themes emerged: value of early ACP preserves PWD's autonomy in cases of differing PWD carepartner values, acute medical crises, and clinician paternalism; barriers to ACP with PWD including the dynamic and subjective assessment of patient decision‐making capacity, inconsistent awareness of cognitive impairment by clinicians, and the need to balance patient and family carepartner involvement; and strategies to support ACP include clarifying clinicians' roles in ACP, standardizing clinicians' approach to PWD and their carepartners, and making time for ACP and decision‐making assessments that allow PWD and carepartner involvement regardless of the patients' capacity. Conclusions Clinicians found early ACP for PWD valuable in promoting patient‐centered care among an at‐risk population. In sharing their perspectives on conducting ACP for PWD, clinicians described challenges that are amenable to changes in training, workflow, and material support for clinician time. Clinical practices need sustainable scheduling and financial support models.
Research Objective Vulnerable patients, such as racial and ethnic minorities, infrequently participate in advance care planning (ACP). Reasons underlying low uptake are not well understood. We sought to examine clinician perspectives regarding barriers to ACP among vulnerable populations. Study Design Case studies with semi‐structured interviews. Population Studied Health systems were purposively selected by an expert advisory panel to ensure diversity of health system size, region, type (ie, academic, public, nonprofit), and religious affiliation. Within each site, a purposive sample of 10–13 clinicians was selected by the chief medical officer or a palliative care leader based on clinician role (eg, physicians, nurse practitioners, social workers), specialty, and experience with ACP. Principal Findings We interviewed 75 clinicians at 6 health systems after which we reached thematic saturation. When asked to describe characteristics of patients with whom they have difficulty discussing ACP, clinicians most frequently identified racial and ethnic minorities and non‐English or non‐native English speakers. Four themes emerged that characterized clinicians’ perspectives regarding barriers to ACP among vulnerable patients. First, clinicians had preconceived notions that vulnerable patients were reluctant to participate in ACP due to mistrust of the health care system or cultural beliefs that preclude discussions about death and dying. Second, these preconceptions led to clinicians feeling anxious while discussing ACP with vulnerable patients, resulting in their avoiding ACP altogether or undertaking only cursory explorations of these patients’ goals and values. Third, clinicians had fixed beliefs about successful ACP (eg, identifying a single decision maker, completing legal documents) that were often discordant with preferences among vulnerable patients. Fourth, clinicians reported insufficient institutional resources to properly engage vulnerable patients, including in‐person translators with training in discussing ACP. Conclusions We identified several clinician‐ and institution‐level factors that may mediate low uptake of ACP among vulnerable patients, suggesting that observed differences in rates of ACP between vulnerable patients and others may be modifiable. Implications for Policy or Practice Current efforts to promote ACP, including Medicare’s ACP billing codes, may not be effective in all patient populations due to clinician‐ and institution‐level barriers to ACP that are unlikely to be addressed by financial incentives. Additional research is needed to more completely characterize clinician decision making regarding ACP among vulnerable patients, including developing interventions to modify heuristics that may lead to disparities with a goal of ensuring equitable access to ACP among all patients. Institutions should also consider investing in more robust translator programs to facilitate ACP discussions with non‐English and non‐native English speakers. Primary Funding Source National Institutes of Health.
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