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Caring for those who die at home: the use and validation of ‘Care Of the Dying Evaluation’ (CODE) with bereaved relatives
  1. Catriona R Mayland1,
  2. Carolyn Lees2,
  3. Alison Germain1,
  4. Barbara A Jack3,
  5. Trevor F Cox4,
  6. Stephen R Mason1,
  7. Angela West5 and
  8. John E Ellershaw1
  1. 1Marie Curie Palliative Care Institute Liverpool (MCPCIL), University of Liverpool, Liverpool, UK
  2. 2Liverpool Community Health NHS Trust, Liverpool, UK
  3. 3Evidence-Based Practice Research Centre, Edge Hill University, Ormskirk, UK
  4. 4Cancer Research UK Liverpool Cancer Trials Unit, University of Liverpool, Liverpool, UK
  5. 5Liverpool John Moore's University, Liverpool, UK
  1. Correspondence to Dr Catriona R Mayland, Department of Molecular and Clinical Cancer Medicine, Marie Curie Palliative Care Institute Liverpool (MCPCIL), University of Liverpool, Cancer Research Centre, 200 London Road, Liverpool L3 9TA, UK; catriona.mayland{at}


Background As well as facilitating patients’ wish to die at home, evaluating quality of care in this setting is essential. Postbereavement surveys with family members represent one assessment method. ‘Care Of the Dying Evaluation’ (CODE) is a 40-item self-completion postbereavement questionnaire, based on the key components of best practice for care of the dying.

Aim To assess the validity and reliability of CODE by conducting: cognitive ‘think aloud’ interviews; test–retest analysis; and assessing internal consistency and construct validity of three key composite scales.

Design Postbereavement survey to next-of-kin (NOK).

Setting/participants 291 NOK to patients who died at home in Northwest England from an advanced incurable illness were invited to complete the CODE questionnaire. Additionally, potential participants were asked to undertake a cognitive interview and/or complete CODE for a second time a month later.

Results 72 bereaved relatives (24.7% response rate) returned the completed CODE questionnaire, and 25 completed CODE for a second time. 15 cognitive interviews were undertaken. All interviewees found CODE sensitively worded and easy to understand. Minor revisions were suggested to provide additional clarity. Test–retest analysis showed all except one question had moderate or good stability. Although the ENVIRONMENT scale was not as relevant within the home setting, all three key composite scales showed good internal consistency and construct validity.

Conclusions ‘CODE’ represents a user-friendly, comprehensive outcome measure for care of the dying and has been found to be valid and reliable. CODE could potentially be used to benchmark individual organisations and identify areas for improvement.

  • Bereavement
  • Terminal care
  • Quality of life

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