Using a self-directed workbook to support advance care planning with long term care home residents

Abstract

Background While advance care planning (ACP) has been shown to improve the quality of end-of-life (EOL) communication and palliative care, it is rarely practiced in long term care (LTC) homes, where staff time to support the process is limited. This study examines the potential of a publicly available self-directed ACP workbook distributed to LTC residents to encourage ACP reflection and communication. Methods Recruitment took place across three LTC homes, between June 2018 and July 2019. To be eligible, residents had to have medical stability, cognitive capacity, and English literacy. The study employed a mixed methods concurrent design using the combination of ranked (quantitative) and open (qualitative) workbook responses to examine documented care preferences and ACP reflections and communications. Results 58 residents initially agreed to participate in the study of which 44 completed self-directed ACP workbooks. Our combined quantitative and qualitative results suggested that the workbooks supported the elicitation of a range of resident care preferences of relevance for EOL care planning and decision making. For example, ranked data highlighted that most residents want to remain involved in decisions pertaining to their care (70%), even though less than half expect their wishes to be applied without discretion (48%). Ranked data further revealed many residents value quality of life over quantity of life (55%) but a sizable minority are concerned they will not receive enough care at EOL (20%). Open comments affirmed and expanded on ranked data by capturing care preferences not explored in the ranked data such as preferences around spiritual care and post mortem planning. Analysis of all open comments also suggested that while the workbook elicited many reflections that could be readily communicated to family/friends or staff, evidence that conversations had occurred was less evident in recorded workbook responses. Conclusions ACP workbooks may be useful for supporting the elicitation of resident care preferences and concerns in LTC. Developing follow up protocols wherein residents are supported in communicating their workbook responses to families/friends and staff may be a critical next step in improving ACP engagement in LTC. Such protocols would require staff training and an organizational culture that empowers staff at all levels to engage in follow up conversations with residents.

Palliative Approach to Care Education for Multidisciplinary Staff of Long-Term Care Homes: A Pretest Post-Test Study

“…There is a need for LTC homes in Canada and elsewhere to initiate ACP discussions early when residents are able to express their values and wishes as a critical component of implementing a palliative approach to care ( Hunter et al, 2020 ; Sussman et al, 2020 ; Sussman, Kaasalainen et al, 2021 ). There is a compelling need for encouraging and recommending future practices within policy work to include ACP communication and to normalize and standardize such discussions as part of routine practice ( Zhou et al, 2022 ).…”

“…ACP is a critical component to implementing a palliative approach to care in long-term care (LTC) homes; it allows residents and their care partners such as family members or friends to be better prepared for end-of-life (EOL) care and decision-making ( Gilissen et al, 2018 ; Sudore et al, 2017 ; Vellani, Zuniga et al, 2022 ). However, many LTC residents are not offered opportunities to participate in ACP discussions prior to or upon their admission to LTC ( Hunter et al, 2020 ; Sussman et al, 2020 ; Sussman, Kaasalainen et al., 2021 ). Many receive life-sustaining treatments including admission to critical care in the last 3 months of their life ( Chaudhuri et al, 2017 ).…”

“This is how I want it”: Exploring the use of a workbook with persons with dementia to support advance care planning engagement

“…The workbook is a publicly available interactive 12-page workbook that is informed by a staged model of advance care planning engagement. The four steps included in the workbook are designed to move people through a process of personal reflection and communication ( Sussman, Kaasalainen, et al, 2021 ). Each section contains open-ended ended questions, while the second section also contains ranked choice questions.…”

“…We selected this tool because of its relevance to persons with dementia, as it prompts to reflection on what constitutes quality of life and quality of care, family/caregiver involvement in decision-making, and appropriate moments for advance care planning conversations ( Giordano et al, 2022 ; Sussman et al, 2020 ; Sussman, Kaasalainen, et al, 2021 ; Van der Steen, Van Soest-Poortvliet, et al, 2014 ). Further, the generic nature of the tool does not necessitate that persons with dementia accept their diagnosis prior to use, thus overcoming an obstacle to advance care planning conversations identified by family/caregivers and health providers ( Hirschman et al, 2008 ).…”

Slam Bam, Thank you, Ma’am: The Challenges of Advance Care Planning Engagement in Long-Term Care

“…A myriad of ACP tools and processes have been developed to support ACP reflections, communication, and documentation (Butler, Ratner, McCreedy, Shippee, & Kane, 2016; Sussman et al, 2017b; Sussman et al, 2019; Van der Steen et al, 2012). While these materials and interventions have shown some promise in providing staff, residents, and families with structured mechanisms for reflecting on issues of importance, communicating preferences, and/or documenting decisions (Capps, Gillen, Hayley, & Mason, 2018; Davis, Morgans, & Dunne, 2019; Fahner et al, 2019; Kaasalainen et al, 2021; Oczkowski, Chung, Hanvey, Mbuagbaw, & You, 2016; Sussman et al, 2021), the roles that non-regulated staff may play in the distribution and discussion of ACP materials, and the optimal conditions for engaging in such discussions within the context of LTC, remain unexplored (Dixon & Knapp, 2018; Sussman et al, 2019). For example, in the context of LTC where 70–90 per cent of hands-on care is provided by non-regulated staff such as personal support workers/care aides, recreational workers, and dietary assistants, it may not be feasible or desirable to rely on ACP protocols designed to be implemented by nurses and physicians (Kontos, Miller, & Mitchell, 2009).…”