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

Abstract

BackgroundPalliative 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.MethodsCluster 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.DiscussionThe 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 registrationAustralian New Zealand Clinical Trials Registry ACTRN12615000200583.

Family Meetings in Inpatient Specialist Palliative Care: A Mechanism to Convey Empathy

“…30 It remains unclear whether family meetings, which are resource intensive, have long-term benefits and are cost effective. 31 As services in Australia increasingly move toward fee-for-service or activity-based funding models, such quantification of family meeting outcomes will become increasingly necessary to justify family centered care. 32 Because supporting the quality of life of family members is an explicit component to the World Health Organization definition of palliative care, developing robust evidence for interventions that are designed to support patients and relatives is critical.…”

Estratégias de cuidado familiar frente à terminalidade da vida

“…We also highlight the search for qualification, making it possible, through the studies, to present models / strategies, facilities / difficulties found in providing care to these families and patients. 18 Psychology, however, seems to help in what, for people, is still a taboo: "to prepare for the nearness of death." Fear, anguish, and uncertainty about the unknown are issues specifically attributed to this professional category.…”

Profissionais Paliativistas e suas Contribuições na Prevenção de Luto Complicado

“…Verificou-se que tais conferências são realizadas como uma estratégia de comunicação, no sentido de prover esclarecimentos acerca do diagnóstico, evolução do quadro e prognóstico, e estabelecer acordos entre equipe e unidade de cuidado em relação aos objetivos do tratamento, além de poder proporcionar suporte psicossocial. Por conseguinte, tal constatação vai ao encontro do que foi explanado na introdução deste estudo (Hudson et al, 2015). Apesar disso, foi identificado que essas reuniões não fazem parte do dia a dia de todos os profissionais, devido à falta de condições de trabalho, outras responsabilidades e à dificuldade de contexto e de habilidade.…”