Abstract
BackgroundThere is increasing interest in improving the quality of care that patients with advanced dementia receive when they are dying. Our understanding of the palliative care needs of these patients and the natural history of advanced disease is limited. Many people with advanced dementia have unplanned emergency admissions to the acute hospital; this is a critical event: half will die within 6 months. These patients have complex needs but often lack capacity to express their wishes. Often carers are expected to make decisions. Advance care planning discussions are rarely performed, despite potential benefits such more consistent supportive healthcare, a reduction in emergency admissions to the acute hospital and better resolution of carer bereavement.Design/MethodsWe have used the MRC complex interventions framework, a "bottom-up" methodology, to develop an intervention for patients with advanced dementia and their carers aiming to 1) define end of life care needs for both patients and carers, 2) pilot a palliative care intervention and 3) produce a framework for advance care planning for patients.The results of qualitative phase 1 work, which involved interviews with carers, hospital and primary care staff from a range of disciplines, have been used to identify key barriers and challenges. For the exploratory trial, 40 patients will be recruited to each of the control and intervention groups. The intervention will be delivered by a nurse specialist. We shall investigate and develop methodology for a phase 3 randomised controlled trial. For example we shall explore the feasibility of randomisation, how best to optimise recruitment, decide on appropriate outcomes and obtain data for power calculations. We will evaluate whether the intervention is pragmatic, feasible and deliverable on acute hospital wards and test model fidelity and its acceptability to carers, patients and staff.DiscussionResults of qualitative phase 1 work suggested that carers and staff were keen to discuss these issues and guided the development of the intervention and choice of outcomes. This will be vital in moving to a phase III trial that is pragmatic and feasible for these complex patients within the NHSTrial registrationISRCTN03330837
Highlights
There is increasing interest in improving the quality of care that patients with advanced dementia receive when they are dying
The admission to hospital of a person with dementia with acute medical illness is a critical event: half will die within 6 months [2]
We found a lack of adequately powered clinical trials in this field and evidence that "palliative care" is often defined as a withdrawal of treatment or of single interventions (i.e. "fever management policies") rather than a holistic approach that formulates a management plan according to individual needs of the patients and their families
Summary
There is increasing interest in improving the quality of care that patients with advanced dementia receive when they are dying. Many people with advanced dementia have unplanned emergency admissions to the acute hospital; this is a critical event: half will die within 6 months. These patients have complex needs but often lack capacity to express their wishes. Advance care planning discussions are rarely performed, despite potential benefits such more consistent supportive healthcare, a reduction in emergency admissions to the acute hospital and better resolution of carer bereavement. The admission to hospital of a person with dementia with acute medical illness is a critical event: half will die within 6 months [2]. The provision of palliative care services, irrespective of diagnosis, has been supported by a number of recent UK government reports and policies including the 2005 Royal Commission Report [5], the National Audit Office and the End of Life Care Improvement Programme
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