title: Locating care at the end of life: burden, vulnerability, and the practical accomplishment of dying.
abstract: Home is frequently idealised as the preferred location for end-of-life care, while in-patient hospital care is viewed with suspicion and fear. Yet many people with a terminal illness spend their final days in some form of medicalised institutional setting, such as a specialist palliative care in-patient unit. Drawing on semi-structured interviews with in-patients at a specialist palliative care unit, we focus on their difficulties in finding a better place of care at the end of their life. We found that participants came to conceptualise home though a sense of bodily vulnerabilities and that they frequently understood institutional care to be more about protecting their family from the social, emotional and relational burdens of dying. For a significant number of participants the experience of dying came to be understood through what could be practically accomplished in different locales. The different locales were therefore framed around providing the best care for the patient and their family.
authors.affiliation: Primary Care Health Science, University of Oxford, UK.
authors.forename: John I
authors.initials: JI
authors.lastname: MacArtney
authors.affiliation: Faculty of Arts and Social Sciences, University of New South Wales, Australia.
authors.forename: Alex
authors.initials: A
authors.lastname: Broom
authors.affiliation: Faculty of Arts and Social Sciences, University of New South Wales, Australia.
authors.forename: Emma
authors.initials: E
authors.lastname: Kirby
authors.affiliation: Palliative Care, St Vincent's Hospital Brisbane, Australia.
authors.forename: Phillip
authors.initials: P
authors.lastname: Good
authors.affiliation: Palliative Care, St Vincent's Hospital Brisbane, Australia.
authors.forename: Julia
authors.initials: J
authors.lastname: Wootton
authors.affiliation: Faculty of Nursing, Midwifery and Health, University of Technology Sydney, Australia.
authors.forename: Jon
authors.initials: J
authors.lastname: Adams
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D005190:Family / Q000523:psychology; D005260:Female; D017051:Hospice Care / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000523:psychology*; D036301:Qualitative Research; D019452:Terminally Ill
keywords: cancer; end-of-life care; experience of illness; interviewing (qualitative); narrative method; palliative care