Many ED presentations by palliative care patients may be avoidable. Appropriate sharing of information to on-call doctors, creating confidence in carers and providing extra practical supports is necessary. A comprehensive, coordinated specialist palliative care approach across community and acute services may help ensure patients are not sent to the ED inappropriately.
BackgroundFor most people, home is the preferred place of care and death. Despite the development of specialist palliative care and primary care models of community based service delivery, people who are dying, and their families/carers, can experience isolation, feel excluded from social circles and distanced from their communities. Loneliness and social isolation can have a detrimental impact on both health and quality of life. Internationally, models of social and practical support at the end of life are gaining momentum as a result of the Compassionate Communities movement. These models have not yet been subjected to rigorous evaluation. The aims of the study described in this protocol are: (1) to evaluate the feasibility, acceptability and potential effectiveness of The Good Neighbour Partnership (GNP), a new volunteer-led model of social and practical care/support for community dwelling adults in Ireland who are living with advanced life-limiting illness; and (2) to pilot the method for a Phase III Randomised Controlled Trial (RCT).DesignThe INSPIRE study will be conducted within the Medical Research Council (MRC) Framework for the Evaluation of Complex Interventions (Phases 0–2) and includes an exploratory two-arm delayed intervention randomised controlled trial. Eighty patients and/or their carers will be randomly allocated to one of two groups: (I) Intervention: GNP in addition to standard care or (II) Control: Standard Care. Recipients of the GNP will be asked for their views on participating in both the study and the intervention. Quantitative and qualitative data will be gathered from both groups over eight weeks through face-to-face interviews which will be conducted before, during and after the intervention. The primary outcome is the effect of the intervention on social and practical need. Secondary outcomes are quality of life, loneliness, social support, social capital, unscheduled health service utilisation, caregiver burden, adverse impacts, and satisfaction with intervention. Volunteers engaged in the GNP will also be assessed in terms of their death anxiety, death self efficacy, self-reported knowledge and confidence with eleven skills considered necessary to be effective GNP volunteers.DiscussionThe INSPIRE study addresses an important knowledge gap, providing evidence on the efficacy, utility and acceptability of a unique model of social and practical support for people living at home, with advanced life-limiting illness. The findings will be important in informing the development (and evaluation) of similar service models and policy elsewhere both nationally and internationally.Trial registrationISRCTN18400594 18th February 2015.
Evidence identified was mainly from uncontrolled observational studies, making causality difficult to establish. Studies were heterogeneous in methodology and outcome measures. There was a trend toward excess AEs using the RC method, in comparison to the AL and 3DS methods. The methodological quality of the AL studies was low. A direct comparison of AL and 3DS methods would be informative.
Accurate prognostication is an enormous challenge for professionals caring for patients with advanced disease. Few studies have compared the prognostic accuracy of different professional groups within a hospice setting. The aim of this study was to compare the ability of 5 professional groups to estimate the survival of patients admitted to a specialist palliative care unit. No group accurately predicted the length of patient survival more than 50% of the time. Nursing and junior medical staff were most accurate while care assistants were least accurate. When in error, senior clinical staff tended to under-estimate survival. Independent mobility on admission was the only variable predictive of length of survival. Thus, professional groups differ in their prognostic accuracy. An awareness of a group's propensity to over- or under-estimate prognosis should be incorporated into future work on prognostication models.
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