How to achieve the desired outcomes of advance care planning in nursing homes: a theory of change

Abstract

BackgroundAdvance care planning (ACP) has been identified as particularly relevant for nursing home residents, but it remains unclear how or under what circumstances ACP works and can best be implemented in such settings. We aimed to develop a theory that outlines the hypothetical causal pathway of ACP in nursing homes, i.e. what changes are expected, by means of which processes and under what circumstances.MethodsThe Theory of Change approach is a participatory method of programme design and evaluation whose underlying intention is to improve understanding of how and why a programme works. It results in a Theory of Change map that visually represents how, why and under what circumstances ACP is expected to work in nursing home settings in Belgium. Using this approach, we integrated the results of two workshops with stakeholders (n = 27) with the results of a contextual analysis and a systematic literature review.ResultsWe identified two long-term outcomes that ACP can achieve: to improve the correspondence between residents’ wishes and the care/treatment they receive and to make sure residents and their family feel involved in planning their future care and are confident their care will be according to their wishes. Besides willingness on the part of nursing home management to implement ACP and act accordingly, other necessary preconditions are identified and put in chronological order. These preconditions serve as precursors to, or requirements for, accomplishing successful ACP. Nine original key intervention components with specific rationales are identified at several levels (resident/family, staff or nursing home) to target the preconditions: selection of a trainer, ensuring engagement by management, training ACP reference persons, in-service education for healthcare staff, information for staff, general practitioners, residents and their family, ACP conversations and documentation, regular reflection sessions, multidisciplinary meetings, and formal monitoring.ConclusionsThe Theory of Change map presented here illustrates a theory of how ACP is expected to work in order to achieve its desired long-term outcomes while highlighting organisational factors that potentially facilitate the implementation and sustainability of ACP. We provide the first comprehensive rationale of how ACP is expected to work in nursing homes, something that has been called for repeatedly.

Initiation of advance care planning in newly admitted nursing home residents in Flanders, Belgium: A prospective cohort study

“…Research has shown that lack of knowledge of ACP is an important barrier to engage in or successfully implement ACP. Informing residents and their family about ACP and the ACP policy within the NH is crucial for residents to be able to share their preferences for future care adequately . The minority for whom ACP was initiated at NH admission were probably more aware of the possibilities of ACP.…”

“…Various explanations for not initiating ACP in NH residents are possible: residents were unwilling to discuss their preferences or rejected ACP; existing pre‐admission arrangements for end‐of‐life care (e.g. advance directives) might need no further discussion; residents trust their relatives and NH staff to make important decisions for them, in their best interest; residents were unaware of the possibility to discuss their preferences for future care; or ACP was not embedded in routine care . Research has shown that lack of knowledge of ACP is an important barrier to engage in or successfully implement ACP.…”

“…Concordant with earlier studies of ACP engagement in older adults, we found a low prevalence of ACP initiation at every measuring point. 7,23,24 Furthermore, Bollig et al found that the majority of residents without dementia had not been engaged in ACP at all. 25 In the current study, these residents were more likely to have ACP initiation at NH admission or not at all.…”

“…advance directives) might need no further discussion; residents trust their relatives and NH staff to make important decisions for them, in their best interest; residents were unaware of the possibility to discuss their preferences for future care; or ACP was not embedded in routine care. [24][25][26][27] Research has shown that lack of knowledge of ACP is an important barrier to engage in or successfully implement ACP. Informing residents and their family about ACP and the ACP policy within the NH is crucial for residents to be able to share their preferences for future care adequately.…”

Black Nursing Home Residents More Likely to Watch Advance Care Planning Video

“…ACP is an iterative process between multiple interested parties: the residents, their family, and their healthcare providers . The success of ACP within the NH setting is complex and predicated on resident‐, family‐, healthcare professional–, and facility‐level factors . Thus, this study seeks to address the following questions: (1) What resident characteristics are associated with differences in being offered and shown the video?…”