McCaughan, Dorothy May orcid.org/0000-0001-5388-2455, Roman, Eve orcid.org/0000-0001-7603-3704, Smith, Alexandra Gwen orcid.org/0000-0002-1111-966X et al. (5 more authors) (2019) Perspectives of bereaved relatives of patients with haematological malignancies concerning preferred place of care and death:a qualitative study. Palliative Medicine. pp. 518-530. ISSN 0269-2163
Abstract
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: A total of 10 in-depth interviews with bereaved relatives. Results: Although most people expressed a preference for home death, not all attained this. The 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.
Metadata
Item Type: | Article |
---|---|
Authors/Creators: |
|
Copyright, Publisher and Additional Information: | © The Author(s) 2019 Funding Information: We wish to thank the study participants who took part in an interview and shared sensitive and emotive issues at a difficult time. We also thank David Brown the project steering group lay member and Ruth Hart (RH) for checking the coding of transcripts. D.A.H., E.R., A.G.S., A.C.G. and M.R.H. designed the study. D.A.H. recruited the study participants and conducted interviews. Transcripts were coded and analysed by D.M. with discussion/input from D.A.H. D.M. wrote the first draft of the manuscript. D.A.H., E.R. and A.G.S. revised the manuscript. M.R.H., A.C.G., R.D.P. and M.J.J. commented on the clinical aspects of the study. All authors approved the final version. The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was supported by the Marie Curie Research Grants Scheme (Grant Reference: C38860/A12554). The Haematological Malignancy Research Network was funded by Bloodwise (Grant Reference: 15037). Publisher Copyright: © The Author(s) 2019. |
Keywords: | Leukaemia,lymphoma,multiple myeloma,preferred place of care,preferred place of death,qualitative research |
Dates: |
|
Institution: | The University of York |
Academic Units: | The University of York > Faculty of Sciences (York) > Health Sciences (York) |
Depositing User: | Pure (York) |
Date Deposited: | 16 Jan 2019 16:40 |
Last Modified: | 07 Feb 2025 00:23 |
Published Version: | https://doi.org/10.1177/0269216318824525 |
Status: | Published |
Refereed: | Yes |
Identification Number: | 10.1177/0269216318824525 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:141170 |
Download
Filename: 0269216318824525.pdf
Description: Perspectives of bereaved relatives of patients with haematological malignancies concerning preferred place of care and death: A qualitative study
Licence: CC-BY 2.5