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research
'A bed in the middle of nowhere': parents' meanings of place of death for adults with cystic fibrosis
Authors
Cartier
Cottrell
+33 more
Davies
Dellon
Department of Health
Department of Health
Dodge
Downing
Dyck
Exley
Ford
Gieryn
Gomes
Gott
Grande
Grinyer
Grinyer
Grinyer
Karen Lowton
Karlsen
Kurland
Lowton
Madden
Marie Curie Cancer Care
Martin
McGuffie
Miles
Mitchell
Peace
Poland
Robinson
Robinson
Seymour
Thomas
Vedam
Publication date
1 October 2009
Publisher
'Elsevier BV'
Doi
Cite
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. © 2009 Elsevier Ltd. All rights reserved
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