title: Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention.
abstract: Patients with advanced dementia often receive poor end-of-life care. We aimed to design and pilot a palliative care and advance care plan (ACP) intervention. Patients had undergone emergency hospital admission and had severe dementia. The intervention consisted of a palliative care patient assessment which informed an ACP discussion with the carer, who was offered the opportunity to write an ACP for the person with dementia. Carer-patient dyads were randomized to 'usual care' or the intervention. Carer-related outcome measures included the Kessler Distress Scale, Decision Satisfaction Inventory, Client Satisfaction Questionnaire and the Euroqol-5D, measured at baseline, six weeks, six months and three months after bereavement. The Satisfaction with End of Life Care in Dementia Scale was completed if the patient died. The 32 patient participants were physically frail and in the advanced stages of dementia: 62% had pressure damage to the skin, all needed feeding assistance and 95% were in pain. Nearly 50% died during the six-month follow-up period. Carers were difficult to recruit during acute admission; 33 patients and carers entered the study (22 intervention arm; 11 control arm). Only seven carers made ACPs. The care planning discussion was well received, but few carers wrote an ACP, despite intensive support from an experienced nurse specialist. Advance care planning is, in theory, a necessary intervention for people with severe dementia; the reluctance of carers to write plans needs to be explored further.
authors.affiliation: Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, University College London Medical School, UK. e.sampson@medsch.ucl.ac.uk
authors.forename: Elizabeth L
authors.initials: EL
authors.lastname: Sampson
authors.forename: Louise
authors.initials: L
authors.lastname: Jones
authors.forename: Ingela C V
authors.initials: IC
authors.lastname: Thuné-Boyle
authors.forename: Riitta
authors.initials: R
authors.lastname: Kukkastenvehmas
authors.forename: Michael
authors.initials: M
authors.lastname: King
authors.forename: Baptiste
authors.initials: B
authors.lastname: Leurent
authors.forename: Adrian
authors.initials: A
authors.lastname: Tookman
authors.forename: Martin R
authors.initials: MR
authors.lastname: Blanchard
mesh_terms: D000328:Adult; D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers; D003680:Deglutition Disorders / Q000451:nursing; D003704:Dementia / Q000451:nursing*; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000451:nursing; D010166:Palliative Care; D018579:Patient Selection; D010865:Pilot Projects; D011788:Quality of Life; D011795:Surveys and Questionnaires