title: An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes.
abstract: BACKGROUND
  Most people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. Discussions about end-of-life care between families and nursing home staff are uncommon, despite a range of potential benefits. In this study we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice.
  
  
  METHODS
  An ethnographic study in two nursing homes where the Compassion Intervention was delivered. The Compassion Intervention provides a model of end-of-life care engaging an Interdisciplinary Care Leader to promote integrated care, educate staff, support holistic assessments and discuss end of life with families. We used a framework approach, undertaking a thematic analysis of fieldwork notes and observations recorded in a reflective diary kept by the Interdisciplinary Care Leader, and data from in-depth interviews with 23 informants: family members, GPs, nursing home staff, and external healthcare professionals.
  
  
  RESULTS
  Four major themes described strategies for improving practice: (i) educating families and staff about dementia progression and end-of-life care; (ii) appreciating the greater value of in-depth end-of-life discussions compared with simple documentation of care preferences; (iii) providing time and space for sensitive discussions; and (iv) having an independent healthcare professional or team with responsibility for end-of-life discussions.
  
  
  CONCLUSIONS
  The Interdisciplinary Care Leader role offers a promising method for supporting and improving end-of-life care discussions between families of people with advanced dementia and nursing home staff. These strategies warrant further evaluation in nursing home settings.
authors.affiliation: Centre for Mental Health, Maya House, 134-138 Borough High Street, London, SE1 1LB, UK.
authors.forename: Geena
authors.initials: G
authors.lastname: Saini
authors.affiliation: Marie Curie Palliative Care Research Department (MCPCRD), Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
authors.forename: Elizabeth L
authors.initials: EL
authors.lastname: Sampson
authors.affiliation: Marie Curie Palliative Care Research Department (MCPCRD), Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
authors.forename: Sarah
authors.initials: S
authors.lastname: Davis
authors.affiliation: Marie Curie Palliative Care Research Department (MCPCRD), Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
authors.forename: Nuriye
authors.initials: N
authors.lastname: Kupeli
authors.affiliation: Marie Curie Palliative Care Research Department (MCPCRD), Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
authors.forename: Jane
authors.initials: J
authors.lastname: Harrington
authors.affiliation: Bamford Centre for Mental Health & Wellbeing, University of Ulster, Magee Campus, Northland Road, Derry Londonderry, BT48 7JL, UK.
authors.forename: Gerard
authors.initials: G
authors.lastname: Leavey
authors.affiliation: Department of Primary Care and Population Health, UCL Royal Free Site, Rowland Hill Street, London, NW3, UK.
authors.forename: Irwin
authors.initials: I
authors.lastname: Nazareth
authors.affiliation: Marie Curie Palliative Care Research Department (MCPCRD), Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
authors.forename: Louise
authors.initials: L
authors.lastname: Jones
authors.affiliation: Marie Curie Palliative Care Research Department (MCPCRD), Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK. kirsten.moore@ucl.ac.uk.
authors.forename: Kirsten J
authors.initials: KJ
authors.lastname: Moore
mesh_terms: D032722:Advance Care Planning / Q000458:organization & administration; D017028:Caregivers / Q000523:psychology; D003704:Dementia / Q000451:nursing*; D004645:Empathy; D005192:Family Health; D006117:Grief; D006266:Health Education / Q000458:organization & administration; D007722:Health Knowledge, Attitudes, Practice; D006282:Health Personnel / Q000193:education / Q000458:organization & administration; D006801:Humans; D007406:Interview, Psychological; D008499:Medical Records; D009735:Nursing Homes; D010348:Patient Care Team / Q000458:organization & administration; D011364:Professional Practice; D011368:Professional-Family Relations; D012941:Social Responsibility; D012944:Social Support; D013727:Terminal Care; D006113:United Kingdom
keywords: Advanced dementia; End-of-life discussions; Ethnography; Family carers; Nursing homes