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Preferred place of death in paediatric, teenage and young adult haemato-oncology patients: a retrospective review
  1. Philippa Stilwell1,
  2. Ankit Bhatt2,
  3. Keval Mehta2,
  4. Ben Carter3,
  5. Maggie Bisset1,
  6. Louise Soanes1 and
  7. Ananth Shankar1
  1. 1Paediatric Oncology, University College London Hospital, London, UK
  2. 2Medical School, University College London, London, UK
  3. 3Biostatistics, King's College London, London, UK
  1. Correspondence to Dr Philippa Stilwell, Paediatric Oncology, University College London, London HA1 3UJ, UK; philippa.stilwell{at}nhs.net

Abstract

Objectives Identifying the preferred place of death for children/young people with cancer and determining whether this is achieved is pertinent to inform palliative care service provision. The aims of this retrospective case series review were to determine where children/young people with cancer want to die and whether their preferred place of death was achieved.

Methods Clinical/demographic details, including preferred and actual places of death, were recorded for 121 patients who died between 2012 and 2016 at a tertiary haematology–oncology centre. A logistic regression model was used to determine the odds of achieving the preferred place of death in patient subgroups.

Results 74 (61%) patients had a documented discussion regarding place of death preference. Where a preferred location was identified, 72% achieved it. All patients who wanted to die in the hospital (n=17) or a hospice (n=9) did, but only 58% of patients who wanted to die at home (n=40) achieved this. Of the 42% (n=17) who wanted to die at home but did not, 59% of these were due to rapid deterioration in clinical status shortly after the discussion. Having supportive treatment in the last month of life was associated with increased odds of achieving the preferred place of death versus those who were undergoing chemotherapy/radiotherapy (OR 3.19, 95% CI 1.04 to 9.80, p value=0.04).

Conclusion Where hospice/hospital was chosen as the preferred place of death, this was always achieved. Achieving home as the preferred place of death was more challenging and frequently prevented by rapid clinical deterioration. Clinicians should be encouraged to address end-of-life preferences at an early stage, with information provided adequately. Further research should explore implications of these findings on both end-of-life experience and overall service provision.

  • end of life care
  • hospice care
  • home care
  • paediatrics
  • supportive care
  • cancer
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Footnotes

  • Correction notice This paper has been amended since it was published Online First. Some minor grammatical errors have been corrected.

  • Contributors PS, AB, KM, MB, LS, AS made substantial contributions to the concept and design of the work. PS, AB, KM acquired the data. BC analysed the data. PS, AB, KM, BC, MB, LS and AS interpreted the data. PS drafted the article. PS, AB, KM, BC, MB, LS and AS revised the article for critically important intellectual content. PS, AB, KM, BC, MB, LS and AS approved the version to be published.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Disclaimer The views expressed in the submitted article are not the authors' own and are not an official position of the institution or funder.

  • Competing interests None declared.

  • Patient consent for publication Not required.

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

  • Data availability statement All data relevant to the study are included in the article

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