Date Published: August 7, 2017
Publisher: Public Library of Science
Author(s): Meera Agar, Tim Luckett, Georgina Luscombe, Jane Phillips, Elizabeth Beattie, Dimity Pond, Geoffrey Mitchell, Patricia M. Davidson, Janet Cook, Deborah Brooks, Jennifer Houltram, Stephen Goodall, Lynnette Chenoweth, Terence J. Quinn.
Palliative care planning for nursing home residents with advanced dementia is often suboptimal. This study compared effects of facilitated case conferencing (FCC) with usual care (UC) on end-of-life care.
A two arm parallel cluster randomised controlled trial was conducted. The sample included people with advanced dementia from 20 Australian nursing homes and their families and professional caregivers. In each intervention nursing home (n = 10), Palliative Care Planning Coordinators (PCPCs) facilitated family case conferences and trained staff in person-centred palliative care for 16 hours per week over 18 months. The primary outcome was family-rated quality of end-of-life care (End-of-Life Dementia [EOLD] Scales). Secondary outcomes included nurse-rated EOLD scales, resident quality of life (Quality of Life in Late-stage Dementia [QUALID]) and quality of care over the last month of life (pharmacological/non-pharmacological palliative strategies, hospitalization or inappropriate interventions).
Two-hundred-eighty-six people with advanced dementia took part but only 131 died (64 in UC and 67 in FCC which was fewer than anticipated), rendering the primary analysis under-powered with no group effect seen in EOLD scales. Significant differences in pharmacological (P < 0.01) and non-pharmacological (P < 0.05) palliative management in last month of life were seen. Intercurrent illness was associated with lower family-rated EOLD Satisfaction with Care (coefficient 2.97, P < 0.05) and lower staff-rated EOLD Comfort Assessment with Dying (coefficient 4.37, P < 0.01). Per protocol analyses showed positive relationships between EOLD and staff hours to bed ratios, proportion of residents with dementia and staff attitudes. FCC facilitates a palliative approach to care. Future trials of case conferencing should consider outcomes and processes regarding decision making and planning for anticipated events and acute illness. Australian New Zealand Clinical Trial Registry ACTRN12612001164886
Care in advanced dementia requires a palliative approach focused on quality of life (QOL) [1–4]. Nursing home residents with advanced dementia often receive suboptimal palliation due to limited staff awareness and training [2, 5–14]. Communication between staff, health services and families (including surrogate decision-makers) addressing palliative care needs is often poor [6, 7]. Decisions include whether hospital transfers and acute interventions such as intravenous antibiotics will offer net benefit versus detriment to QOL [8, 9, 12, 15–18]. Surrogates should be involved in symptom management decisions and care planning, and provide the personal context [7, 10, 14].
Forty-nine nursing homes were approached to recruit the 20 needed (Fig 1). Reasons for declining to participate included a lack of interest in research, other research projects or confidence in their case conferencing and palliative care programs. Due to difficulties recruiting facilities, three facilities were included who had less than 100 beds (two UC with 46 and 88 beds; one FCC with 75 beds). Three hundred and nineteen residents were assessed for eligibility, with 25 not eligible. Informed consent was obtained for 294 residents, and four died prior to the intervention period commencing and four withdrew. The baseline sample comprised 130 residents (UC facilities) and 156 residents (FCC facilities). During the study, 131 (46%) participants died, 64 in UC and 67 in FCC. Median time to death was 7 months (inter-quartile range [IQR] 9), with no difference between the UC and FCC arms (P = 0.27).
This RCT evaluated EOL outcomes of facilitated family case conferencing in advanced dementia from perspectives of EOL care received (satisfaction) and resident outcomes (comfort, quality of life and quality of dying) . While the study recruited sufficient participants overall, a lower than estimated mortality rate meant the participants with primary outcome data (after death) did not meet target sample size. Although no significant intervention effects were observed on EOL outcomes or QOL, management was more consistent with a palliative approach in FCC.
This study is one of the few RCTs of palliative care interventions in nursing homes worldwide, and appears to be the first to test efficacy of facilitated family case conferencing for people with advanced dementia. The study’s primary endpoint of quality of EOL care was under-powered and did not show evidence of effect. In spite of these limitations, a systematic approach to facilitating a palliative approach and skills enhancement drove improvements in care. Given the growing burden of dementia globally, these data will be formative in interventions aimed to improving palliative care in nursing homes in the future.