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Determinants of hospital death in haematological cancers: findings from a qualitative study
  1. Dorothy McCaughan1,
  2. Eve Roman1,
  3. Alexandra G Smith1,
  4. Anne Garry2,
  5. Miriam Johnson3,
  6. Russell Patmore4,
  7. Martin Howard5 and
  8. Debra A Howell1
  1. 1 Epidemiology & Cancer Statistics Group, Seebohm Rowntree Building, University of York, York, UK
  2. 2 Department of Palliative Care, York Hospital, York, UK
  3. 3 Centre for Health and Population Sciences, University of Hull, Hull, UK
  4. 4 Queens Centre for Oncology and Haematology, Castle Hill Hospital, Cottingham, UK
  5. 5 Department of Haematology, York Hospital, York, UK
  1. Correspondence to Dr Debra A Howell, Epidemiology & Cancer Statistics Group, Seebohm Rowntree Building, University of York, YO10 5DD, York, UK; debra.howell{at}york.ac.uk

Abstract

Objectives Current UK health policy promotes enabling people to die in a place they choose, which for most is home. Despite this, patients with haematological malignancies (leukaemias, lymphomas and myeloma) are more likely to die in hospital than those with other cancers, and this is often considered a reflection of poor quality end-of-life care. This study aimed to explore the experiences of clinicians and relatives to determine why hospital deaths predominate in these diseases.

Methods The study was set within the Haematological Malignancy Research Network (HMRN—www.hmrn.org), an ongoing population-based cohort that provides infrastructure for evidence-based research. Qualitative interviews were conducted with clinical staff in haematology, palliative care and general practice (n=45) and relatives of deceased HMRN patients (n=10). Data were analysed for thematic content and coding and classification was inductive. Interpretation involved seeking meaning, salience and connections within the data.

Results Five themes were identified relating to: the characteristics and trajectory of haematological cancers, a mismatch between the expectations and reality of home death, preference for hospital death, barriers to home/hospice death and suggested changes to practice to support non-hospital death, when preferred.

Conclusions Hospital deaths were largely determined by the characteristics of haematological malignancies, which included uncertain trajectories, indistinct transitions and difficulties predicting prognosis and identifying if or when to withdraw treatment. Advance planning (where possible) and better communication between primary and secondary care may facilitate non-hospital death.

  • Haematological malignancies
  • leukaemia
  • lymphoma
  • myeloma
  • hospital death
  • end of life.

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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Footnotes

  • Contributors DH, ER, AS, AG, RP and MH designed the study. DH managed the study and conducted the interviews. DM analysed the data. MH, AG, RP and MJ commented on the clinical aspects of the study. DM, DH and ER wrote the first draft of the paper. All authors commented on and approved the final draft.

  • Funding This work was supported by the Marie Curie Research Grants Scheme, grantC38860/A12554; HMRN is funded by Bloodwise, grant 10042.

  • Competing interests None declared.

  • Ethics approval This study has NHS ethical approval (Yorkshire and the Humber REC: 11/YH/0306). All participants were given verbal and written information about the study aims and their involvement. Informed written consent was sought from individuals prior to interview and assurances given concerning confidentiality and anonymity. Participants were told that they could withdraw from the study at anytime.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement None declared.

  • Correction notice This article has been corrected since it published Online First. A funding statement has been added.This paper has been amended since it was published Online First. Owing to a scripting error, some of the publisher names in the references were replaced with ’BMJ Publishing Group'. This only affected the full text version, not the PDF. We have since corrected these errors and the correct publishers have been inserted into the references.

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