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Perspectives of bereaved relatives of patients with haematological malignancies concerning preferred place of care and death: a qualitative study

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JournalPalliative Medicine
DateAccepted/In press - 21 Dec 2018
DateE-pub ahead of print (current) - 30 Jan 2019
Early online date30/01/19
Original languageEnglish

Abstract

Abstract (250/250)
Background: People with haematological malignancies have different end of life care
patterns from those with other cancers and are more likely to die in hospital. Little is known
about patient and relative preferences at this time, and whether these are achieved.
Aim: To explore the experiences and reflections of bereaved relatives of patients with
leukaemia, lymphoma or myeloma, and examine: 1) preferred place of care and death; 2)
perceptions of factors influencing attainment of preferences; and 3) changes that could
promote achievement of preferences.
Design: Qualitative interview study incorporating ‘Framework’ analysis.
Setting/participants: Ten in-depth interviews with bereaved relatives.
Results: Although most people expressed a preference for home death, not all attained this.
Influencing factors include disease characteristics (potential for sudden deterioration and
death), the occurrence and timing of discussions (treatment cessation, prognosis, place of
care/death), family networks (willingness/ability of relatives to provide care, knowledge
about services, confidence to advocate) and resource availability (clinical care, hospice
beds/policies). Preferences were described as changing over time and some family members
retrospectively came to consider hospital as the ‘right’ place for the patient to have died.
Others shared strong preferences with patients for home death, and acted to ensure this
was achieved. No patients died in a hospice, and relatives identified barriers to death in this
setting.
Conclusion: Preferences were not always achieved due to a series of complex, interrelated
factors, some amenable to change and others less so. Death in hospital may be preferred
and appropriate, or considered the best option in hindsight.

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© The Author(s) 2019

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