gms | German Medical Science

16. Deutscher Kongress für Versorgungsforschung

Deutsches Netzwerk Versorgungsforschung e. V.

4. - 6. Oktober 2017, Berlin

International ‘Care Of the Dying Evaluation’ (CODE): quality of care for cancer patients as perceived by bereaved relatives – study protocol

Meeting Abstract

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  • Christina Gerlach - Universitätsmedizin der Johannes Gutenberg-Universität Mainz, Mainz, Germany
  • Catriona Mayland - University of Liverpool, Liverpool, United Kingdom
  • Dagny Faksvåg Haugen - University of Bergen/ Faculty of Medicine and Dentistry, Bergen, Norway
  • Martin Weber - Universitätsmedizin der Johannes Gutenberg-Universität Mainz, Mainz, Germany

16. Deutscher Kongress für Versorgungsforschung (DKVF). Berlin, 04.-06.10.2017. Düsseldorf: German Medical Science GMS Publishing House; 2017. DocV197

doi: 10.3205/17dkvf157, urn:nbn:de:0183-17dkvf1573

Veröffentlicht: 26. September 2017

© 2017 Gerlach et al.
Dieser Artikel ist ein Open-Access-Artikel und steht unter den Lizenzbedingungen der Creative Commons Attribution 4.0 License (Namensnennung). Lizenz-Angaben siehe



Background: Whilst many cancer patients express a wish to die at home, for a number of good reasons, there will always be those whose expected place of death is hospital. Despite the uniqueness of death in the individual’s life, the quality of care in the last days of life in hospital remains a global issue. The gold standard of assessment in palliative care is the patients’ own report. This poses practical and ethical issues in the dying phase. Accompanying family and friends are the best proxies to reflect on the quality of care for dying cancer patients. Yet, it remains unanswered whether it is feasible to involve bereaved relatives in the development and management of changes in care for the dying. International comparisons and exchange of experiences can help facilitate quality improvement programs of work. Hence, we report on the planned international project ERANet-LAC CODE.

Research Question: Study aims of this joint international project involving seven countries are: to assess the current quality of care, the need for change, and the feasibility of implementing key changes in the care of cancer patients dying in hospital, by the involvement of bereaved family and friends.

Methods: Standardized translation of the CODE (Care Of the Dying Evaluation) questionnaire, a post-bereavement outcome measure to assess the quality of patient care and level of family support in the last two days of life and immediate post-bereavement period. The 42 items of the questionnaire cover relevant aspects of the environment, care, communication, symptom control and management, spiritual needs and unmet information needs from the perspective of family and friends who accompanied the patient. Pre-testing and piloting of the questionnaire will be undertaken using cognitive interviews, to develop a core international version of CODE (iCODE). Further assessment will be conducted by an international survey of bereaved relatives’ views to be analyzed quantitatively and by content analysis. Action research will be introduced to develop and implement change to improve poor areas of care as detected by the iCODE assessment. Results of the changes in care will be subject to systematic assessment using validated measures and participant observation.

Results: The project consists of 5 work packages building upon each other.

  • WP1 - preparation and pilot
    • Aim: CODE refinement and revision for international use
    • Outcome: CODE in English, Spanish, Portuguese, German, Norwegian, Polish; iCODE = a core international version
  • WP2 - CODE international survey
    • Aim: International survey of bereaved relatives of cancer patients who died in hospitals
    • Outcome: International Report; National reports (Argentina, Brazil, England, Germany, Norway, Poland, Uruguay); Cross country comparisons
  • WP3 - action research/ proof of concept
    • Aims: Implementation of changes based on results of the survey in Argentina and Poland; Assessment of feasibility of involving bereaved relatives
    • Outcomes: Information about relatives’ willingness to engage in change activities; Report on immediate direct impact of key changes in clinical care
  • WP4 - dissemination and exploitation
    • Aim: Ensuring national and international sharing of findings from the project
    • Outcome: Project website:; Public and scientific presentations and publications; Networking with palliative care organizations in Europe and South America
  • WP5 - project management
    • Aim: Efficient running of the project
    • Objective: Coordination; Negotiation and consortium agreement; Development of data collection tools; Liaison with ERANet-LAC; Timely reporting and submission of deliverables of other WPs

Discussion: The strength of the project is the concerted systematic approach allowing for valid and reliable comparisons. Further, with the iCODE questionnaire, a sustainable instrument for quality assurance will be available. Involvement of bereaved relatives in implementation of change will be challenging and is susceptible to bias. However, it is assumed the best approach as there is no practical and ethical alternative.

Clinical Implications: The expected results of this joint project will provide - based on the experience of affected people - an instrument for assessment and guidance for change in the clinical care of cancer patients dying in hospitals.