The Care of the Dying (CODE) Project

Initiative Type
Model of Care
Status
Plan
Added
11 April 2019
Last updated
22 August 2020

Summary

Queensland Health has invested significantly in the review of the ‘Care Plan for the Dying Person (CPDP), premised on the International Collaborative Best Care of the Dying plan, which supports provision of  highest quality care in the terminal phase.

Some 14 of 17 Hospital and Health Services (HHSs) utilise the CPDP and this project will provide the evidence as to whether this tool could be broadly utilised to evaluate care of dying patients across Queensland Health and provide evidence for use of the care plan in improving outcomes of care.

The CODE questionnaire, captures the views of bereaved caregivers, and contains 41 components of best practice for care of the dying, including symptom control, communication, dignity, respect and family support.

Key dates
Oct 2018
Implementation sites
Royal Brisbane & Women’s Hospital
Partnerships
Royal Brisbane & Women’s Hospital, Clinical Excellence Queensland

Aim

The project aims to evaluate the perception of loved ones of the care provided to dying patients utilising the CODE (CARE of the Dying Evaluation) tool, previously validated in United Kingdom.

Benefits

  • Acknowledges choice and quality of life of a person who is recognised to be dying.
  • Supports their individuality and to care for the psychosocial and spiritual needs of themselves and their families.
  • Supports their families and if needed, continues after death as bereavement care.

Background

The Care at the End of Life project team has been established to support a coordinated approach to implementing the Strategy across Queensland. Queensland Health's Clinical Excellence Queensland coordinates the implementation of the project, in collaboration with each Hospital and Health Service.

References

1. Casarett DJ, Crowley R, Hirschman KB. Surveys to assess satisfaction with end-of-life care: does timing matter. J Pain Symptom Manage 2003; 25 (2): 128-132.

  • Sent bereaved relatives surveys 2 and 6 weeks after the bereavement and found no difference in terms of RR or self-reported level of distress.

2. Thompson GN, Chochinov HM. Methodological challenges in measuring quality of care at the end of life in the long-term care environment. J Pain Symptom Manage 2006; 32 (4): 378-391.

3. The following references relating to CODE.

CR Mayland, H Mulholland, M Gambles, JE Ellershaw. How well do we currently care for our dying patients in acute hospitals. The views of bereaved relatives? BMJ Support Palliat Care. 2017 Jan 17. pii: bmjspcare-2014-000810. doi: 10.1136/bmjspcare-2014-000810. [Epub ahead of print]

A Germain, CR Mayland and B Jack. The potential therapeutic value for bereaved relatives participating in research: An exploratory study. Palliative and Supportive Care 2016 Oct;14(5):479-87. doi: 10.1017/S1478951515001194. Epub 2015 Oct 29.

CR Mayland, C Lees, A Germain, B Jack, TF Cox, SR Mason, A West and JE Ellershaw. Caring for those who die at home: the use and validation of ‘Care Of the Dying Evaluation’ (CODE) with bereaved relatives. BMJ Support Palliat Care 2014;4:2 167-174 Published Online First: 28 March 2014 doi:10.1136/bmjspcare-2013-000596

CR Mayland, EMI Williams, J Addington-Hall, TF Cox and JE Ellershaw. Assessing the quality of care for dying patients from the bereaved relatives’ perspective: further validation of ‘Evaluating Care and Health Outcomes – for the Dying’. J Pain Symp Manage 2014; 47 (4): 687-696.  

C Lees, C Mayland, A West and A Germain. Quality of end-of-life care for those who die at home: views and experiences of bereaved relatives and carers. Int J Pall Nurs 2014; 20(2): 63-68.

CR Mayland, EMI Williams, J Addington-Hall, T Cox and JE Ellershaw. Does the ‘Liverpool Care Pathway’ facilitate an improvement in quality of care for dying cancer patients? Br J Cancer. 2013 May 28;108(10):1942-8.

CR Mayland, EMI Williams, JE Ellershaw. Assessing quality of care for the dying: the development and initial validation of a postal self-completion questionnaire for bereaved relatives. Palliative Medicine 2012; 26 (7): 897 – 907 (on-line issue ahead of print November 2011)

Further Reading

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Key contact

Carol Douglas
Director, Palliative and Supportive Care - Royal Brisbane and Women's Hospital
Metro North Hospital and Health Service
(07) 3646 6838
CareAtEOL@health.qld.gov.au