title: 'A bed in the middle of nowhere': parents' meanings of place of death for adults with cystic fibrosis.
abstract: As populations age and chronic conditions become more prevalent, an individual's ability to choose the location of their end-of-life care and death is increasingly considered important in the provision of good healthcare, with home implied as the 'best' place of death through UK government policy and specialist and voluntary palliative care services. However, considering meanings of place of end-of-life care and death is complex for young adults with life-limiting conditions where the disease course is variable and uncertain, and aggressive and palliative treatments are administered both at home and in hospital often until death. Although 'place' is a pivotal element in healthcare practice, research and policy, there has been little attempt to understand the meaning and importance of place in understanding experiences of care at end of life. Through analysis of in-depth interviews and letters received from parents of 27 young adults in England, Scotland and Wales who died from cystic fibrosis from 1999 to 2002 aged 17-36 years, key factors that influence families' meanings of place at end of life are presented. Both home and hospital deaths are reported, with no deaths in hospices. Preferences for possible locations of death are generally limited early in the disease course by choice of aggressive treatment, particularly lung transplantation. Rate of health decline, organisation and delivery of services, and relationships with specialist and general healthcare staff strongly influence parents' experience of death at home or in hospital, although no physical location was regarded a 'better' place of death. Meanings of, and attachment to place are mediated for families through these factors, questioning the appropriateness of a 'home is best' policy for those dying from life-limiting conditions.
authors.affiliation: King's College London, Institute of Gerontology, Strand, London, United Kingdom. karen.lowton@kcl.ac.uk
authors.forename: Karen
authors.initials: K
authors.lastname: Lowton
mesh_terms: D000293:Adolescent; D000328:Adult; D032721:Adult Children; D001293:Attitude to Death; D003550:Cystic Fibrosis / Q000628:therapy; D003695:Delivery of Health Care / Q000458:organization & administration; D018450:Disease Progression; D005260:Female; D006699:Home Care Services; D006749:Hospital Design and Construction; D006760:Hospitalization; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010166:Palliative Care / Q000523:psychology; D010290:Parents / Q000523:psychology*; D011368:Professional-Family Relations; D013727:Terminal Care / Q000379:methods / Q000523:psychology*; D055815:Young Adult