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Preferred and actual place of death in haematological malignancy
  1. D A Howell1,
  2. H I Wang1,
  3. E Roman1,
  4. A G Smith1,
  5. R Patmore2,
  6. M J Johnson3,
  7. A Garry4 and
  8. M Howard4
  1. 1Epidemiology and Cancer Statistics Group, Department of Health Sciences, University of York, York, UK
  2. 2Queen's Centre for Oncology and Haematology, Castle Hill Hospital, Hull, UK
  3. 3Hull York Medical School, University of Hull, Hull, UK
  4. 4York Teaching Hospital NHS Foundation Trust, York, UK
  1. Correspondence to D A Howell, Epidemiology and Cancer Statistics Group, Department of Health Sciences, University of York, York YO10 5DD, UK; debra.howell{at}ecsg.york.ac.uk

Abstract

Objectives Home is considered the preferred place of death for many, but patients with haematological malignancies (leukaemias, lymphomas and myeloma) die in hospital more often than those with other cancers and the reasons for this are not wholly understood. We examined preferred and actual place of death among people with these diseases.

Methods The study is embedded within an established population-based cohort of patients with haematological malignancies. All patients diagnosed at two of the largest hospitals in the study area between May 2005 and April 2008 with acute myeloid leukaemia, diffuse large B-cell lymphoma or myeloma, who died before May 2010 were included. Data were obtained from medical records and routine linkage to national death records.

Results 323 deceased patients were included. A total of 142 (44%) had discussed their preferred place of death; 45.8% wanted to die at home, 28.2% in hospital, 16.9% in a hospice, 5.6% in a nursing home and 3.5% were undecided; 63.4% of these died in their preferred place. Compared to patients with evidence of a discussion, those without were twice as likely to have died within a month of diagnosis (14.8% vs 29.8%). Overall, 240 patients died in hospital; those without a discussion were significantly more likely to die in hospital than those who had (p≤0.0001). Of those dying in hospital, 90% and 75.8% received haematology clinical input in the 30 and 7 days before death, respectively, and 40.8% died in haematology areas.

Conclusions Many patients discussed their preferred place of death, but a substantial proportion did not and hospital deaths were common in this latter group. There is scope to improve practice, particularly among those dying soon after diagnosis. We found evidence that some people opted to die in hospital; the extent to which this compares with other cancers is of interest.

  • Preferred place of death
  • Actual place of death
  • Lymphoma
  • Myeloma
  • Haematological malignancy

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors DAH, ER, AGS, MH and AG contributed to the conception and design of the study; DAH managed and implemented the study and was responsible for data acquisition; and AGS managed the HMRN data and HIW conducted the data analysis. AG, MH, MJJ and RP contributed clinical advice during the interpretation of data. DAH and ER wrote the first draft of the paper; all authors contributed to subsequent revisions and approved the final manuscript.

  • Funding HMRN is funded by Leukaemia & Lymphoma Research. This study was supported by a legacy donated to the Haematology Department at York Teaching Hospital NHS Foundation Trust.

  • Competing interests None declared.

  • Ethics approval HMRN has ethical approval (REC 04/01205/69) from Leeds West Research Ethics Committee, R&D approval from each Trust in the area, and exemption from Section 251 (formally Section 60) of the Health & Social Care Act (2001) (PIAG 1-05(h)/2007). This specific study also has additional ethical approval (REC 07/H1307/168).

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