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

Reich, Amanda J.; Perez, Stephen; Gazarian, Priscilla; D’Arcangelo, Noah; Gonzales, Kristina M.; Rodgers, Philip T.; Weissman, Joel S.; Ladin, Keren

doi:10.1007/s11606-021-07208-3

Cited by 11 publications

(5 citation statements)

References 37 publications

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“…Good rapport with healthcare professionals was also highlighted in a study of ACP facilitated by general practice nurses, where patients cited the nurses’ “compassionate and caring” approach as important to the discussion [ 23 ]. In a recent US-based study, patients identified good ACP discussions as premised on trust and rapport between healthcare professional and patient, and as those where clear information and communication about the process and its related records were provided [ 24 ]. As we found in our earlier study on hospital-based ReSPECT conversations, doctors are acutely aware that good rapport and trust are crucial to a positive experience of the ReSPECT process, and this influences their decision making on when to initiate ReSPECT conversations and with whom [ 7 ].…”

Section: Discussionmentioning

confidence: 99%

Patient and relative experiences of the ReSPECT process in the community: an interview-based study

Eli,

Harlock,

Huxley

et al. 2024

BMC Prim. Care

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Background The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) was launched in the UK in 2016. ReSPECT is designed to facilitate meaningful discussions between healthcare professionals, patients, and their relatives about preferences for treatment in future emergencies; however, no study has investigated patients’ and relatives’ experiences of ReSPECT in the community. Objectives To explore how patients and relatives in community settings experience the ReSPECT process and engage with the completed form. Methods Patients who had a ReSPECT form were identified through general practice surgeries in three areas in England; either patients or their relatives (where patients lacked capacity) were recruited. Semi-structured interviews were conducted, focusing on the participants’ understandings and experiences of the ReSPECT process and form. Data were analysed using inductive thematic analysis. Results Thirteen interviews took place (six with patients, four with relatives, three with patient and relative pairs). Four themes were developed: (1) ReSPECT records a patient’s wishes, but is entangled in wider relationships; (2) healthcare professionals’ framings of ReSPECT influence patients’ and relatives’ experiences; (3) patients and relatives perceive ReSPECT as a do-not-resuscitate or end-of-life form; (4) patients’ and relatives’ relationships with the ReSPECT form as a material object vary widely. Patients valued the opportunity to express their wishes and conceptualised ReSPECT as a process of caring for themselves and for their family members’ emotional wellbeing. Participants who described their ReSPECT experiences positively said healthcare professionals clearly explained the ReSPECT process and form, allocated sufficient time for an open discussion of patients’ preferences, and provided empathetic explanations of treatment recommendations. In cases where participants said healthcare professionals did not provide clear explanations or did not engage them in a conversation, experiences ranged from confusion about the form and how it would be used to lingering feelings of worry, upset, or being burdened with responsibility. Conclusions When ReSPECT conversations involved an open discussion of patients’ preferences, clear information about the ReSPECT process, and empathetic explanations of treatment recommendations, working with a healthcare professional to co-develop a record of treatment preferences and recommendations could be an empowering experience, providing patients and relatives with peace of mind.

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Section: Discussionmentioning

confidence: 99%

Patient and relative experiences of the ReSPECT process in the community: an interview-based study

Eli,

Harlock,

Huxley

et al. 2024

BMC Prim. Care

View full text Add to dashboard Cite

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Section: Methodsmentioning

confidence: 99%

“…Recruitment of FG participants varied across the five sites based on the requirements of the site and included recruiting through PCPs, ACP clinics, patient and family advisory councils, or through ACP billing code data. 28 The interdisciplinary research team included researchers in health services, medicine, nursing, and social science. All members of the research team had previous experience in conducting qualitative research and participated in the collection, analysis, or interpretation of interview data.…”

Section: Methodsmentioning

confidence: 99%

Educational Resources and Self-Management Support to Engage Patients in Advance Care Planning: An Interpretation of Current Practice in the US

Gazarian

Gupta

Reich

et al. 2022

Am J Hosp Palliat Care

Self Cite

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Background Educational resources and decision aids help patients, their care partners and health care providers prepare for and confidently engage in Advance Care Planning (ACP). Incorporating ACP resources as part of a self-management approach may lead to fuller engagement with ACP beyond identifying a surrogate decision-maker, towards supporting a person to identify their values and goals and to communicate them with their care partners and health care providers. Objective To examine the use of educational resources and decision aids to support self-management of ACP in 11 health systems across the US. Methods This study was a qualitative interview study examining barriers and facilitators to ACP. Guided by interpretative description and the chronic care model, we sought to describe how health care stakeholders (clinicians and administrators) and patients use ACP resources to support engagement with ACP. Results 274 health care stakeholders were interviewed, and 7 patient focus groups were conducted across 11 health systems. The majority of participants reported using resources to support completion of preference documentation, with fewer participants using resources that promote more engagement in ACP. ACP resources were reported as valuable in preparing for and complementing a complex, interpersonal, and interprofessional process. Barriers to using resources included a lack of a defined workflow and time. Conclusion Our data suggest that ACP resources that promote engagement are valued but under-utilized in practice. The use of ACP resources with an inter-professional team and a self-management approach is a promising strategy to mitigate the barriers of ACP implementation while improving engagement in ACP.

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“…Reimbursement for related clinical effort in advance care planning has not driven change or improved the process. 16,17 Novel efforts to facilitate earlier GoCc are needed.…”

Section: Introductionmentioning

confidence: 99%

The PACT Project: Feasibility of a Multidisciplinary, Multi-Faceted Intervention to Promote Goals of Care Conversations

Szmuilowicz

Clepp

Neagle

et al. 2023

Am J Hosp Palliat Care

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Background Patients living with serious illness generally want their physicians to facilitate Goals of Care conversations (GoCc), yet physicians may lack time and skills to engage in these conversations in the outpatient setting. The problem may be addressed by supporting multiple members of the clinical team to facilitate GoCc with the patient while admitted to the hospital. Methods A multi-modal training and mentored implementation program was developed. A group of 10 hospitals were recruited to participate. Each hospital selected a primary inpatient unit on which to start the intervention, then expanded to a secondary unit later in the project. The number of trained facilitators (champions) and the number of documented GoCc were tracked over time. Results Nine of 10 hospitals completed the 3-year project. Most of the units were general medical-surgical units. Forty-eight champions were trained at the kick-off conference, attended primarily by nurses, physicians, and social workers. By the end of the project, 153 champions had been trained. A total of 51 087 patients were admitted to PACT units with 85.4% being screened for eligibility. Of the patients who were eligible, over 68% had documented GoCc. Conclusion A multifaceted quality improvement intervention focused on serious illness communication skills can support a diverse clinical workforce to facilitate inpatient GoCc over time.

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

Cited by 11 publications

References 37 publications

Patient and relative experiences of the ReSPECT process in the community: an interview-based study

Patient and relative experiences of the ReSPECT process in the community: an interview-based study

Educational Resources and Self-Management Support to Engage Patients in Advance Care Planning: An Interpretation of Current Practice in the US

The PACT Project: Feasibility of a Multidisciplinary, Multi-Faceted Intervention to Promote Goals of Care Conversations

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