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BMC Palliative Care
Published in: BMC Palliative Care 1/2015

Open Access 01-12-2015 | Study protocol

Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol

Authors: Peter L. Hudson, Afaf Girgis, Geoffrey K. Mitchell, Jenny Philip, Deborah Parker, David Currow, Danny Liew, Kristina Thomas, Brian Le, Juli Moran, Caroline Brand

Published in: BMC Palliative Care | Issue 1/2015

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Abstract

Background

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.

Methods

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.

Discussion

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.

Trial registration

Australian New Zealand Clinical Trials Registry ACTRN12615000200​583.
Literature
1.
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.
2.
Hudson P, Payne S. Family caregivers and palliative care: Current status and agenda for the future. J Palliat Med. 2011;14(7):864–9.PubMedCrossRef
3.
World Health Organisation (WHO). National cancer control programmes: Policies and managerial guidelines. 2nd ed. Geneva: World Health Organisation; 2002. p. 180.
4.
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.
5.
Palliative Care Australia. Standards for providing quality palliative care for all Australians. Canberra: Palliative Care Australia; 2005. p. 44.
6.
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.
7.
Ziegler L, Hill K, Neilly L, Bennett MI, Higginson IJ, Murray SA, et al. Identifying psychological distress at key stages of the cancer illness trajectory: A systematic review of validated self-report measures. J Pain Symptom Manage. 2011;41(3):619–36.PubMedCrossRef
8.
Cherlin E, Fried T, Prigerson HG, Schulman-Green D, Johnson-Hurzeler R, Bradley EH. Communication between physicians and family caregivers about care at the end of life: When do discussions occur and what is said? J Palliat Med. 2005;8(6):1176–85.PubMedPubMedCentralCrossRef
9.
Boyle DK, Miller PA, Forbes-Thompson SA. Communication and end-of-life care in the intensive care unit: Patient, family, and clinician outcomes. Crit Care Nurs Q. 2005;28(4):302–16.PubMedCrossRef
10.
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
11.
Hudson P, Remedios C, Thomas K. A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliat Care. 2010;9(1):17.PubMedPubMedCentralCrossRef
12.
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.
13.
Northouse L, Katapodi M, Song L, Zhang L, Mood D. Interventions with family caregivers of cancer patients: Meta-analysis of randomized trials. CA Cancer J Clin. 2010;60(5):317–39.PubMedPubMedCentral
14.
Hudson P, Thomas K, Quinn K, Cockayne M, Braithwaite M. Teaching family carers about home-based palliative care: Final results from a group education program. J Pain Symptom Manage. 2009;38(2):299–308.PubMedCrossRef
15.
Hudson P, Aranda S, Hayman-White K. A psycho-educational intervention for family caregivers of patients receiving palliative care: A randomised controlled trial. J Pain Symptom Manage. 2005;30(4):329–41.PubMedCrossRef
16.
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.
17.
McMillan SC. Interventions to facilitate family caregiving at the end of life. J Palliat Med. 2005;8 Suppl 1:S132–9.PubMed
18.
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.
19.
Pearson P, Proctor S, Wilcockson J, Allgar V. The process of hospital discharge for medical patients: A model. J Adv Nurs. 2004;46(5):496–505.PubMedCrossRef
20.
Curtis JR, Patrick DL, Shannon SE, Treece PD, Engelberg RA, Rubenfeld GD. The family conference as a focus to improve communication about end-of-life care in the intensive care unit: Opportunities for improvement. Crit Care Med. 2001;29(2 Suppl):N26–33.PubMedCrossRef
21.
Weissman D, Quill T, Arnold R. The family meeting: Starting the conversation #223. J Palliat Med. 2010;13(2):204–5.PubMedCrossRef
22.
Beach WA, Anderson JK. Communication and Cancer? Part II: Conversation Analysis. J Psychosoc Oncol. 2003;21(4):1–22.CrossRef
23.
24.
Stapleton RD, Engelberg RA, Wenrich MD, Goss CH, Curtis JR. Clinician statements and family satisfaction with family conferences in the intensive care unit. Crit Care Med. 2006;34(6):1679–85.PubMedCrossRef
25.
Lautrette A, Ciroldi M, Ksibi H, Azoulay E. End-of-life family conferences: Rooted in the evidence. Critical Care Medicine. 2006;34(11 Suppl):S364–72.PubMedCrossRef
26.
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
27.
Powazki R, Walsh D, Hauser K, Davis MP. Communication in palliative medicine: a clinical review of family conferences. J Palliat Med. 2014;17(10):1167–77.PubMedCrossRef
28.
Hudson P, Remedios C, Zordan R, Thomas K, Clifton D, Crewdson M, et al. Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. J Palliat Med. 2012;15(6):696–702.PubMedPubMedCentralCrossRef
29.
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.
30.
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
31.
Hudson P, Thomas K, Quinn K, Aranda S. Family meetings in palliative care: Are they effective? Palliat Med. 2009;23(2):150–7.PubMedCrossRef
32.
Hudson P, Quinn K, O'Hanlon B, Aranda S. Family meetings in palliative care: Multidisciplinary clinical practice guidelines. BMC Palliat Care. 2008;7:12.PubMedPubMedCentralCrossRef
33.
Hudson P, Thomas K, Trauer T, Remedios C, Clarke D. Psychological and social profile of family caregivers on commencement of palliative care. J Pain Symptom Manage. 2011;41(3):522–34.PubMedCrossRef
34.
Goldberg D, Williams P. Manual of the general health questionnaire. Windsor: NFER Publishing; 1978.
35.
36.
Goldberg DP, Gater R, Sartorius N, Ustun TB, Piccinelli M, Gureje O, et al. The validity of two versions of the GHQ in the WHO study of mental illness in general health care. Psychol Med. 1997;27(1):191–7.PubMedCrossRef
37.
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
38.
Hudson P, Hayman-White K. Measuring the psychosocial characteristics of family caregivers of palliative care patients: Psychometric properties of nine self-report instruments. J Pain Symptom Manage. 2006;31(3):215–28.PubMedCrossRef
39.
Archbold P, Stewart B, Greenlick M, Harvath T. Mutuality and preparedness as predictors of role strain. Res Nurs Health. 1990;13:375–84.PubMedCrossRef
40.
Ware JE, Sherbourne CD. The MOS 36-item Short Form Health Status Survey (SF-36): I. Conceptual framework and item selection. Med Care. 1992;30(6):473–83.PubMedCrossRef
41.
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
42.
Abernethy AP, Shelby-James T, Fazekas BS, Woods D, Currow DC. The Australia-modified Karnofsky Performance Status (AKPS) scale: A revised scale for contemporary palliative care clinical practice. BMC Palliat Care. 2005;4:7.PubMedPubMedCentralCrossRef
43.
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
44.
Downey L, Curtis JR, Lafferty WE, Herting JR, Engelberg RA. The Quality of Dying and Death Questionnaire (QODD): empirical domains and theoretical perspectives. J Pain Symptom Manage. 2010;39(1):9–22.PubMedCrossRef
45.
Earle CC, Landrum MB, Souza JM, Neville BA, Weeks JC, Ayanian JZ. Aggressiveness of cancer care near the end of life: Is it a quality-of-care issue? J Clin Oncol. 2008;26(23):3860–6.PubMedPubMedCentralCrossRef
46.
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.
47.
Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. Hillsdale: Lawrence Erlbaum Associates; 1988.
48.
Schulz K, Altman D, Moher D. CONSORT 2010 statement: Updated guidelines for reporting parallel group randomised trials. Br Med J. 2010;340:c332.CrossRef
49.
Campbell M, Elbourne D, Altman D. CONSORT statement: Extension to cluster randomised trials. Br Med J. 2004;328(7441):702–8.CrossRef
50.
51.
Briggs A, Sculpher M. An introduction to Markov modelling for economic evaluation. Pharmacoeconomics. 1998;13(4):397–409.PubMedCrossRef
52.
53.
Briggs AH. Handling uncertainty in cost-effectiveness models. Pharmacoeconomics. 2000;17(5):479–500.PubMedCrossRef
54.
Boyatzis RE. Transforming qualitative information: Thematic analysis and code development. Sage. 1998.
55.
Guyatt G, Rennie D. JAMA Users’ guide to the medical literature: a manual for evidence-based clincial practice. Chicago: McGraw-Hill Professional; 2002.
56.
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.
Metadata
Title
Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol
Authors
Peter L. Hudson
Afaf Girgis
Geoffrey K. Mitchell
Jenny Philip
Deborah Parker
David Currow
Danny Liew
Kristina Thomas
Brian Le
Juli Moran
Caroline Brand
Publication date
01-12-2015
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2015
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-015-0071-6

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