Effects of facilitated family case conferencing for advanced dementia: A cluster randomised clinical trial

doi:10.1371/journal.pone.0181020

Randomized Controlled Trial

. 2017 Aug 7;12(8):e0181020.

doi: 10.1371/journal.pone.0181020. eCollection 2017.

Effects of facilitated family case conferencing for advanced dementia: A cluster randomised clinical trial

Meera Agar^{1

2

3

4}, Tim Luckett¹, Georgina Luscombe⁵, Jane Phillips¹, Elizabeth Beattie⁶, Dimity Pond⁷, Geoffrey Mitchell⁸, Patricia M Davidson^{1

9}, Janet Cook¹, Deborah Brooks⁶, Jennifer Houltram¹⁰, Stephen Goodall¹⁰, Lynnette Chenoweth¹¹

Affiliations

¹ Faculty of Health, University of Technology Sydney, Ultimo, New South Wales (NSW), Australia.
² South Western Sydney Clinical School, University of New South Wales, Liverpool, NSW, Australia.
³ Ingham Institute for Applied Medical Research, Liverpool, NSW, Australia.
⁴ Improving Palliative Care through Clinical Trials (ImPaCCT), Sydney, NSW, Australia.
⁵ Sydney Medical School, The University of Sydney, Ultimo, NSW, Australia.
⁶ School of Nursing, Queensland University of Technology, Herston, Queensland (QLD), Australia.
⁷ School of Medicine and Public Health, The University of Newcastle, Newcastle, NSW, Australia.
⁸ Faculty of Medicine, The University of Queensland, St Lucia, QLD, Australia.
⁹ School of Nursing, Johns Hopkins University, Baltimore, Maryland, United States of America.
¹⁰ Centre for Health Research and Evaluation (CHERE), Faculty of Business, UTS, Haymarket, NSW, Australia.
¹¹ Centre for Healthy Brain Ageing, University of New South Wales, Randwick, NSW, Australia.

PMID: 28786995
PMCID: PMC5546584
DOI: 10.1371/journal.pone.0181020

Randomized Controlled Trial

Effects of facilitated family case conferencing for advanced dementia: A cluster randomised clinical trial

Meera Agar et al. PLoS One. 2017.

. 2017 Aug 7;12(8):e0181020.

doi: 10.1371/journal.pone.0181020. eCollection 2017.

Authors

Affiliations

¹ Faculty of Health, University of Technology Sydney, Ultimo, New South Wales (NSW), Australia.
² South Western Sydney Clinical School, University of New South Wales, Liverpool, NSW, Australia.
³ Ingham Institute for Applied Medical Research, Liverpool, NSW, Australia.
⁴ Improving Palliative Care through Clinical Trials (ImPaCCT), Sydney, NSW, Australia.
⁵ Sydney Medical School, The University of Sydney, Ultimo, NSW, Australia.
⁶ School of Nursing, Queensland University of Technology, Herston, Queensland (QLD), Australia.
⁷ School of Medicine and Public Health, The University of Newcastle, Newcastle, NSW, Australia.
⁸ Faculty of Medicine, The University of Queensland, St Lucia, QLD, Australia.
⁹ School of Nursing, Johns Hopkins University, Baltimore, Maryland, United States of America.
¹⁰ Centre for Health Research and Evaluation (CHERE), Faculty of Business, UTS, Haymarket, NSW, Australia.
¹¹ Centre for Healthy Brain Ageing, University of New South Wales, Randwick, NSW, Australia.

PMID: 28786995
PMCID: PMC5546584
DOI: 10.1371/journal.pone.0181020

Abstract

Background: 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.

Methods: 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).

Results: 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.

Conclusion: 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.

Trial registration: Australian New Zealand Clinical Trial Registry ACTRN12612001164886.

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Conflict of interest statement

Competing Interests: The authors have declared that no competing interests exist.

Figures

**Fig 1. Study flowchart for IDEAL study residents included in EOLD analysis (N = 131).**
† Original nursing home eligibility criteria were amended, allowing three facilities with bed counts <100 to be included.

See this image and copyright information in PMC

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References

1. van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2014;28(3):197–209. 10.1177/0269216313493685. . - DOI - PubMed
1. Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, et al. The clinical course of advanced dementia. New England Journal of Medicine. 2009;361(16):1529–38. 10.1056/NEJMoa0902234 . - DOI - PMC - PubMed
1. Bosek MS, Lowry E, Lindeman DA, Burck JR, Gwyther LP. Promoting a good death for persons with dementia in nursing facilities: family caregivers' perspectives. JONA'S healthcare law, ethics and regulation. 2003;5 (2):34–41. . - PubMed
1. Mitchell SL. CLINICAL PRACTICE. Advanced Dementia. N Engl J Med. 2015;372(26):2533–40. Epub 2015/06/25. 10.1056/NEJMcp1412652 - DOI - PMC - PubMed
1. Teno JM. Now is the time to embrace nursing homes as a place of care for dying persons. J Palliat Med. 2003;6(2):293–6. 10.1089/109662103764978614 . - DOI - PubMed

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[1] van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2014;28(3):197–209. 10.1177/0269216313493685. . - DOI - PubMed

[2] van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2014;28(3):197–209. 10.1177/0269216313493685. . - DOI - PubMed

[3] Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, et al. The clinical course of advanced dementia. New England Journal of Medicine. 2009;361(16):1529–38. 10.1056/NEJMoa0902234 . - DOI - PMC - PubMed

[4] Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, et al. The clinical course of advanced dementia. New England Journal of Medicine. 2009;361(16):1529–38. 10.1056/NEJMoa0902234 . - DOI - PMC - PubMed

[5] Bosek MS, Lowry E, Lindeman DA, Burck JR, Gwyther LP. Promoting a good death for persons with dementia in nursing facilities: family caregivers' perspectives. JONA'S healthcare law, ethics and regulation. 2003;5 (2):34–41. . - PubMed

[6] Bosek MS, Lowry E, Lindeman DA, Burck JR, Gwyther LP. Promoting a good death for persons with dementia in nursing facilities: family caregivers' perspectives. JONA'S healthcare law, ethics and regulation. 2003;5 (2):34–41. . - PubMed

[7] Mitchell SL. CLINICAL PRACTICE. Advanced Dementia. N Engl J Med. 2015;372(26):2533–40. Epub 2015/06/25. 10.1056/NEJMcp1412652 - DOI - PMC - PubMed

[8] Mitchell SL. CLINICAL PRACTICE. Advanced Dementia. N Engl J Med. 2015;372(26):2533–40. Epub 2015/06/25. 10.1056/NEJMcp1412652 - DOI - PMC - PubMed

[9] Teno JM. Now is the time to embrace nursing homes as a place of care for dying persons. J Palliat Med. 2003;6(2):293–6. 10.1089/109662103764978614 . - DOI - PubMed

[10] Teno JM. Now is the time to embrace nursing homes as a place of care for dying persons. J Palliat Med. 2003;6(2):293–6. 10.1089/109662103764978614 . - DOI - PubMed

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Effects of facilitated family case conferencing for advanced dementia: A cluster randomised clinical trial

Affiliations

Effects of facilitated family case conferencing for advanced dementia: A cluster randomised clinical trial

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