A bed in the middle of nowhere’: Parents' meanings of place of death for adults with cystic fibrosis

Author:
KOWTON Karen
Journal article citation:
Social Science and Medicine, 69(7), October 2009, pp.1056-1062.
Publisher:
Elsevier

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.

Subject terms:
palliative care, parents, young adults, cystic fibrosis, death;
Content type:
research
Location(s):
United Kingdom
Link:
Journal home page
ISSN print:
0277-9536

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