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How good is end of life care for patients dying with cystic fibrosis?
  1. Mary Miller1,
  2. Rachel Lee1,
  3. Sharon Yates1,
  4. Hannah C Billett2,
  5. Stephen Bourke3,
  6. William G Flight4 and
  7. Rachel Quibell5
  1. 1Department of Palliative Care, Oxford University Hospitals NHS Foundation Trust, Oxford, UK
  2. 2Health Education England North East, Newcastle upon Tyne NHS Hospitals Foundation Trust, Newcastle upon Tyne, UK
  3. 3Adult Cystic Fibrosis Centre, Newcastle Upon Tyne NHS Foundation Trust, Newcastle upon Tyne, UK
  4. 4Oxford Adult Cystic Fibrosis Centre, Oxford University Hospitals NHS Foundation Trust, Oxford, UK
  5. 5Department of Palliative Care, Newcastle upon Tyne NHS Foundation Trust, Newcastle upon Tyne, UK
  1. Correspondence to Dr Mary Miller, Palliative Care, Oxford University Hospitals NHS Foundation Trust, Oxford OX3 7LE, UK; mary.miller{at}ouh.nhs.uk

Abstract

Background Cystic Fibrosis (CF) is a life-limiting illness. Audit of the care of patients dying of CF has not been published to date.

Methods Newcastle and Oxford teams adapted the National Audit of Care at the End of Life and agreed additional questions that were particularly pertinent for patients dying as a consequence of their CF. Data were extracted and analysed for 15 patients.

Results On recognition that the patient was dying, the CF teams were less good at reviewing the need for physiological observations (50% vs national 70%) but better at reviewing the need for capillary blood glucose monitoring, oxygen support and intravenous antibiotics compared with the national average for all patients.

On recognition that the patient was dying, the CF teams were better at assessing pain (87% vs national 80%) and breathlessness (93% vs national 73%), but less good at assessing nausea and vomiting (47% vs national 74%).

There was documented evidence that 100% of families and 64% of patients were aware that the patient was at risk of dying.

Conclusion Comparing care of this sample of patients dying with CF against the national data is a useful first step in understanding that many aspects of care are of high quality. This audit identifies the need to offer earlier conversations to patients as their voices may be missing from the conversation. Undertaking a national audit would provide a more reliable and a fuller picture.

  • chronic conditions
  • hospice care
  • respiratory conditions
  • supportive care
  • symptoms and symptom management
  • terminal care
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Footnotes

  • Twitter @dr_mary_miller, @wgflight

  • Contributors MM conceived the idea. MM, RL, SY, HCB and RQ planned the data extraction with advice from WGF and SB. MM, RL, SY, HCB and RQ extracted and analysed the data. MM wrote the first draft. All authors discussed the results and contributed to the final manuscript.

  • 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.

  • Competing interests None declared.

  • Patient consent for publication Not required.

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

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