Implementing advance care planning in early dementia care: results and insights from a pilot interventional trial

Abstract

Background Advance care planning (ACP) is particularly appropriate for persons with early dementia (PWED) since it promotes conversations about dementia-specific illness scenarios, addresses inconsistencies between advance directives and patients’ observed behavior, emphasizes prospective and relational autonomy, and may be generally consistent with older persons’ decision-making needs. However, despite evidence of its benefits, ACP is yet to become widely used among PWED. In this paper, we present a dementia-specific tool developed in Western Switzerland, discuss results of a pilot trial designed to promote ACP among PWED and their relatives, and discuss the feasibility and acceptability of the intervention and the study protocol in prevision of a large scale trial. Methods This one-arm pre-post pilot trial consisted of four visits, with visits 2 and 3 being the ACP intervention. Quantitative outcome measures during visit 1 and 4 assessed the aptitude of the intervention to support PWED autonomy and relatives’ knowledge of PWED’s preferences. Feasibility was explored according to how the recruitment procedure unfurled and based on the necessary revisions to the study protocol and healthcare providers’ reason for excluding a PWED from the study. Acceptability was assessed according to pre-post evaluations, difficulties regarding the intervention or trial participation, and pre-post qualitative interviews regarding participants’ reasons to participate to the study, satisfaction with the tool and difficulties perceived. Results The ACP intervention itself was well received by PWED and their relatives that expressed satisfaction with the procedure, especially regarding the opportunity to discuss a sensitive topic with the help of a facilitator. Five main challenges in terms of feasibility were 1) to locate eligible patients, 2) to tailor recruitment procedures to recruitment locations, 3) to adapt inclusion criteria to clinical routines, 4) to engage PWED and their relatives in ACP, and 5) to design a trial that does not burden PWED. Despite these challenges, the intervention increased the number of advance directives, the concordance between PWED’s preferences and relatives’ decision on their behalf, and relatives’ perceived control over healthcare decisions. Conclusion Misconceptions about dementia and ACP, in the patient, relatives, and healthcare providers, combined with structural and institutional challenges, have the power to impede research and implementation of ACP in dementia care. For this reason, we conclude that a large scale trial to test a dementia-specific tool of ACP is currently not feasible in Western Switzerland and should be endorsed in a systemic approach of ACP. Trial registration This trial was registered in the database clinicaltrial.gov with the number NCT03615027.

User appraisal of a booklet for advance care planning in multiple sclerosis: a multicenter, qualitative Italian study

“…A recently published pilot trial on a nurse-led interview to promote ACP in patients with early dementia showed that the intervention was well received by patients and their significant others. Participants expressed satisfaction with the procedure, especially regarding the opportunity to discuss a sensitive topic with the help of a facilitator [ 45 ]. However, only 16 patients were enrolled out of 105 screened; the trial revealed misconceptions about dementia and ACP in patients, significant others, and healthcare professionals, as well as structural and institutional challenges.…”

Cognitive abilities and engagement in advance care planning among older adults: Results of a Swiss populational study.

“…Okonkwo et al, 2007, 2008; Tallberg et al, 2013), reasoning (Gurrera et al, 2006; Marson et al, 1995), and the appreciation and expression of choice (Marson et al, 1996). Moreover, declining decision-making capacity in individuals with cognitive impairment combined with the uncertainty of when to best initiate discussions about ACP, the need for more adapted explanations and specific intervention programs for ACP as well as insufficient training for physicians in these situations (Bosisio et al, 2021; for a review, see Tilburgs et al, 2018; Wendrich-van Dael et al, 2020) further complicate ACP for individuals with cognitive impairment.…”

“Life goes on”: Perspectives on the will to live from residents of Swiss long-term care facilities

“…In our opinion, explicitly discussing WTL may contribute to a better understanding of the residents, both for staff and residents' loved ones. As an illustration, many advance care planning models include open-ended questions about the WTL (Bosisio et al 2021). Consideration should also be given to including this topic for discussion at other times, such as when a resident first enters the LTCF or during follow-up, as a catalyst for discussions about the resident's current experience.…”