Is This ACP? A Focus Group Study of Patient Experiences of Advance Care Planning.

BACKGROUND: To date, most research on patients' experiences with advance care planning (ACP) focuses on motivations to engage in discussions and how patients prepare. Gaps remain in understanding how non-critically ill Medicare patients perceive ACP encounters, including how they characterize positive and negative experiences with ACP. OBJECTIVES: Understanding these patients' perceptions is imperative as Medicare has sought to incentivize provision of ACP services via two billing codes in 2016. DESIGN: Qualitative focus group study. Thematic analysis was performed to assess participants ACP experience. PARTICIPANTS: Medicare beneficiaries who had engaged in or were billed for ACP. KEY RESULTS: Seven focus groups were conducted with 34 Medicare beneficiaries who had engaged in ACP across 5 US health systems. Participants described a spectrum of perceptions regarding ACP, and a range of delivery approaches, including group ACP, discussions with specialists during serious illness, and ACP in primary care settings during wellness visits. Despite being billed for ACP or having ACP services noted in their medical record, many did not recognize that they had engaged in ACP, expressed lack of clarity over the term "ACP," and were unaware of the Medicare billing codes. Among participants who described quality patient-centered ACP experiences, three additional themes were identified: trusted and established patient/clinician relationships, transparent communication and documentation, and an understanding that ACP is revisable. Participants offered recommendations for clinicians and health systems to improve the patient ACP experience. CONCLUSIONS: Findings include actionable steps to promote patient-centered ACP experiences, including clinician training to support improved communication and facilitating shared decision-making, allocating sufficient clinical time for discussions, and ensuring that documentation of preferences is clear and accessible. Other approaches such as group ACP and ACP navigators may help to support patient interests within clinical constraints and need to be further explored.

Advance Care Planning in Older Adults with CKD: Patient, Care Partner, and Clinician Perspectives.

BACKGROUND: Older 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. METHODS: In 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. RESULTS: We conducted 68 semistructured interviews with 23 patients, 19 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). CONCLUSIONS: Patients, 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.

US clinicians' perspectives on advance care planning for persons with dementia: A qualitative study.

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.

Health Care Impacts Of Resource Navigation For Health-Related Social Needs In The Accountable Health Communities Model.

Social determinants of health can adversely affect health and therefore lead to poor health care outcomes. When it launched in 2017, the Accountable Health Communities (AHC) Model was at the forefront of US health policy initiatives seeking to address social determinants of health. The AHC Model, sponsored by the Centers for Medicare and Medicaid Services, screened Medicare and Medicaid beneficiaries for health-related social needs and offered eligible beneficiaries assistance in connecting with community services. This study used data from the period 2015-21 to test whether the model had impacts on health care spending and use. Findings show statistically significant reductions in emergency department visits for both Medicaid and fee-for-service Medicare beneficiaries. Impacts on other outcomes were not statistically significant, but low statistical power may have limited our ability to detect model effects. Interviews with AHC Model participants who were offered navigation services to help them find community-based resources suggested that navigation services could have directly affected the way in which beneficiaries engage with the health care system, leading them to be more proactive in seeking appropriate care. Collectively, findings provide mixed evidence that engaging with beneficiaries who have health-related social needs can affect health care outcomes.

"Don't Talk to Them About Goals of Care": Understanding Disparities in Advance Care Planning.

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. METHOD: In this national study, we conducted semi-structured interviews with purposively selected clinicians from 6 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, and lack of institutional resources), while the final theme illustrated facilitators to ACP (acknowledging bias and rejecting stereotypes, mission-driven focus on ACP, and 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.