Facilitated case conferences on end-of-life care for persons with advanced dementia—a qualitative study of interactions between long-term care clinicians and family members

Abstract

Background Prognostic uncertainty and the need for proxy decision-making owing to cognitive impairment in advanced dementia, adds complexity to end-of-life care planning within the long-term care setting. Case conferences provide a structure to facilitate difficult conversations and an opportunity for family and clinicians to engage in prospective planning, and reach agreement on goals of end-of-life care. Objective To explore interactions between multidisciplinary healthcare clinicians and families during facilitated case conferences on end-of-life care for residents with advanced dementia. Methods A qualitative approach was used. Transcripts of audio-recorded case conferences facilitated by a trained registered nurse were coded by two independent researchers and analysed inductively. Transcripts were selected from an available pool until thematic saturation was reached. Emerging themes were confirmed with the wider research group. Results Thematic saturation was reached after 25 transcripts. An overarching theme concerned the ways in which clinicians and families bridged medical and person-centred perspectives. Subthemes included: details of day-to-day care versus establishing overall goals of care; expression of emotion versus retreat from emotion; and missed opportunities versus expressed cues. Successful facilitation served to ‘bridge the gap’ between family and clinicians. Conclusion Facilitation of case conferences for residents with advanced dementia should focus on ensuring that: clinicians do not miss opportunities to discuss end-of-life care; discussions on the minutiae of care regularly return to the resident’s broader goals of care; and information on dementia and treatments provided by clinicians is integrated with advice by family members regarding the resident’s premorbid values and likely preferences.

Conducting family meetings on families with dementia: An integrative review

“…Eleven articles were included in this review. Two studies utilised a qualitative phenomenological approach to explore the facilitating and hindering factors of family meetings from the perspective of families living with dementia and medical‐related professionals (Francisco et al., 2022; Gorska et al., 2016). Among the included studies, seven were quantitative research papers, comprising one cluster randomised trial and four randomised controlled trials (Agar et al., 2017; Joling et al., 2013; Joling, van Marwijk, Smit, et al., 2012; Joling, van Marwijk, van der Horst, et al., 2012; Joshi, 2013; Mittelman et al., 1993; Mittelman et al., 1996; Mittelman et al., 2004; Nenner, 2013).…”

“…The majority of participants (78.8%) were part of binary samples (Joling, van Marwijk, Smit, et al., 2012; Mittelman et al., 2004), and 98.2% of them were in spousal relationships. In one of the quantitative studies, the participants lived in nursing homes (Agar et al., 2017), while participants from the other studies all resided in their own homes (Francisco et al., 2022; Gorska et al., 2016; Joling et al., 2013; Joling, van Marwijk, Smit, et al., 2012; Joling, van Marwijk, van der Horst, et al., 2012; Mittelman et al., 1993; Mittelman et al., 1996; Mittelman et al., 2004). As for the two case reports, the participants were hospitalised (Joshi, 2013; Nenner, 2013).…”

“…One of the qualitative studies achieved high methodological quality, with nine ‘Yes’ scores out of the 10 relevant items assessed using the JBI qualitative research quality assessment checklist (Francisco et al., 2022). Another included qualitative study was rated as moderate quality, obtaining a ‘Yes’ score on eight out of the 10 appraisal items (Gorska et al., 2016).…”

“…Additionally, Mittelman et al (1996) found that the median time from baseline to nursing home placement for people with dementia was 329 days longer in the intervention group than in the control group. The two qualitative studies were conducted in Australia (Francisco et al, 2022) and the United Kingdom (Gorska et al, 2016). These studies collected experiential information from family members who participated in pilot family meetings and professionals involved in service provision through focus group interviews.…”

“…Family members were also invited to the meetings held in the nursing homes to make decisions for individuals with advanced dementia. The same approach was taken inFrancisco et al's (2022) qualitative study. In the other six randomised controlled intervention trials, family meetings were conducted at Alzheimer's disease clinics by trained nurses or doctors,…”