The authors declare that they have no competing interests.
1) PH, AG, GM, JP, DP, DC, DL, KT, BL, JM, CB; have made substantial contributions to conception and design; 2) PH, AG, GM, JP, DP, DC, DL, KT, BL, JM, CB; have been involved in drafting the manuscript or revising it critically for important intellectual content; 3) PH, AG, GM, JP, DP, DC, DL, KT, BL, JM, CB; have given final approval of the version to be published; 4) PH, AG, GM, JP, DP, DC, DL, KT, BL, JM, CB; agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is ‘family centered’, with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30–50 % of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically.
The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice.
Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4.
The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting.
Australian New Zealand Clinical Trials Registry ACTRN12615000200583.
Australian Commission on Safety and Quality in Health Care (ACSQHC). Safety and quality of end-of-life care in acute hospitals: A background paper. Sydney: Australian Commission on Safety and Quality in Health Care; 2013. p. 56.
World Health Organisation (WHO). National cancer control programmes: Policies and managerial guidelines. 2nd ed. Geneva: World Health Organisation; 2002. p. 180.
National Institutes of Health. National Institutes of Health state-of-the-science conference statement on improving end of life care, vol. 21. Kensington: National Institutes of Health; 2004. p. 32.
Palliative Care Australia. Standards for providing quality palliative care for all Australians. Canberra: Palliative Care Australia; 2005. p. 44.
National Institute for Clinical Excellence (NICE). Guidance on cancer services: Improving supportive and palliative care for adults with cancer. The manual. London: National Institute for Clinical Excellence; 2004. p. 209.
Hannon B, O'Reilly V, Bennett K, Breen K, Lawlor P. Meeting the family: Measuring effectiveness of family meetings in a specialist inpatient palliative care unit. Palliat Support Care. 2012;10(1):7. CrossRef
Eagar K, Owen A, Williams K, Westera A, Marosszeky N, England R, et al. In: Development CfHS, editor. Effective caring: A synthesis of the international evidence on carer needs and interventions. Brisbane: University of Wollongong; 2007. p. 114.
Hudson P, Aranda S. The ‘Melbourne family support program (FSP)’: Evidence based strategies that prepare family carers for supporting palliative care patients. BMJ Support Palliat Care. 2013.
McMillan SC. Interventions to facilitate family caregiving at the end of life. J Palliat Med. 2005;8 Suppl 1:S132–9. PubMed
National Breast Cancer Centre and National Cancer Control Initiative. Clinical practice guidelines for the psychosocial care of adults with cancer. Camperdown: National Breast Cancer Centre; 2003. p. 246.
Beach WA, Anderson JK. Communication and Cancer? Part II: Conversation Analysis. J Psychosoc Oncol. 2003;21(4):1–22. CrossRef
Ahrens T, Yancey V, Kollef M. Improving family communications at the end of life: Implications for length of stay in the intensive care unit and resource use. Am J Crit Care. 2003;12(4):317–23. discussion 324. PubMed
Payne S, Hudson P. Assessing the family and caregivers. In: Walsh D, Caraceni A, Fainsinger R, Foley K, Glare P, Goh C, Lloyd-Williams M, Olarte J, Radbruch L, editors. Palliative Medicine. Philadelphia: Elsevier; 2008. p. 320–5.
Hudson P, Quinn K, O'Hanlon B, Aranda S. Family meetings in palliative care: Multidisciplinary clinical practice guidelines. BMC Palliat Care. 2008;19(7):12. CrossRef
Goldberg D, Williams P. Manual of the general health questionnaire. Windsor: NFER Publishing; 1978.
Jackson C. The general health questionnaire. Occup Med. 2007;57(1):79. CrossRef
Kristjanson LJ, Atwood J, Degner LF. Validity and reliability of the family inventory of needs (FIN): Measuring the care needs of families of advanced cancer patients. J Nurs Meas. 1995;3(2):109–26. PubMed
Weitzner MA, McMillan SC. The Caregiver Quality of Life Index-Cancer (CQOLC) Scale: revalidation in a home hospice setting. J Palliat Care. 1999;15(2):13–20. PubMed
Curtis JR, Patrick DL, Engelberg RA, Norris K, Asp C, Byock I. A measure of the quality of dying and death: initial validation using after-death interviews with family members. J Pain Symptom Manag. 2002;24(1):17–31. CrossRef
Hudson P, Trauer T, Kelly B, O'Connor M. Improving the psychological wellbeing of family caregivers of home based palliative care patients: a randomised controlled trial. National Heath and Medical Research Council - Final report. Canberra: National Heath and Medical Research Council; 2011.
Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. Hillsdale: Lawrence Erlbaum Associates; 1988.
Schulz K, Altman D, Moher D. CONSORT 2010 statement: Updated guidelines for reporting parallel group randomised trials. Br Med J. 2010;340:c332. CrossRef
Campbell M, Elbourne D, Altman D. CONSORT statement: Extension to cluster randomised trials. Br Med J. 2004;328(7441):702–8. CrossRef
Wesley D. Life table analysis. J Insur Med. 1998;30(4):247–54. PubMed
Boyatzis RE. Transforming qualitative information: Thematic analysis and code development. Sage. 1998.
Guyatt G, Rennie D. JAMA Users’ guide to the medical literature: a manual for evidence-based clincial practice. Chicago: McGraw-Hill Professional; 2002.
National Health and Hospitals Reform Commission (NHHRC). Beyond the blame game: Accountability and performance benchmarks for the next Australian health care agreements. Canberra: National Health and Hospitals Reform Commission; 2008. p. 53.
- Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol
Peter L. Hudson
Geoffrey K. Mitchell
- BioMed Central
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