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

TY - JOUR

T1 - Perspectives of bereaved relatives of patients with haematological malignancies concerning preferred place of care and death

T2 - a qualitative study

AU - McCaughan, Dorothy May

AU - Roman, Eve

AU - Smith, Alexandra Gwen

AU - Garry, Anne C.

AU - Johnson, Miriam

AU - Patmore, Russell

AU - Howard, Martin

AU - Howell, Debra

N1 - © 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.

PY - 2019/5/1

Y1 - 2019/5/1

N2 - 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.

AB - 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.

KW - Leukaemia

KW - lymphoma

KW - multiple myeloma

KW - preferred place of care

KW - preferred place of death

KW - qualitative research

UR - http://www.scopus.com/inward/record.url?scp=85060971677&partnerID=8YFLogxK

U2 - 10.1177/0269216318824525

DO - 10.1177/0269216318824525

M3 - Article

C2 - 30696347

SN - 0269-2163

VL - 33

SP - 518

EP - 530

JO - Palliative Medicine

JF - Palliative Medicine

IS - 5

ER -