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International palliative care experts’ view on phenomena indicating the last hours and days of life

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Abstract

Background

Providing the highest quality care for dying patients should be a core clinical proficiency and an integral part of comprehensive management, as fundamental as diagnosis and treatment. The aim of this study was to provide expert consensus on phenomena for identification and prediction of the last hours or days of a patient’s life. This study is part of the OPCARE9 project, funded by the European Commission’s Seventh Framework Programme.

Method

The phenomena associated with approaching death were generated using Delphi technique. The Delphi process was set up in three cycles to collate a set of useful and relevant phenomena that identify and predict the last hours and days of life. Each cycle included: (1) development of the questionnaire, (2) distribution of the Delphi questionnaire and (3) review and synthesis of findings.

Results

The first Delphi cycle of 252 participants (health care professionals, volunteers, public) generated 194 different phenomena, perceptions and observations. In the second cycle, these phenomena were checked for their specific ability to diagnose the last hours/days of life. Fifty-eight phenomena achieved more than 80 % expert consensus and were grouped into nine categories. In the third cycle, these 58 phenomena were ranked by a group of palliative care experts (78 professionals, including physicians, nurses, psycho–social–spiritual support; response rate 72 %, see Table 1) in terms of clinical relevance to the prediction that a person will die within the next few hours/days. Twenty-one phenomena were determined to have “high relevance” by more than 50 % of the experts. Based on these findings, the changes in the following categories (each consisting of up to three phenomena) were considered highly relevant to clinicians in identifying and predicting a patient’s last hours/days of life: “breathing”, “general deterioration”, “consciousness/cognition”, “skin”, “intake of fluid, food, others”, “emotional state” and “non-observations/expressed opinions/other”.

Conclusion

Experts from different professional backgrounds identified a set of categories describing a structure within which clinical phenomena can be clinically assessed, in order to more accurately predict whether someone will die within the next days or hours. However, these phenomena need further specification for clinical use.

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Notes

  1. Five core themes, pertinent to the care of cancer patients in the last days of life, were structured as primary work packages.

  2. Country representatives provided easy access to health care professionals and volunteers in the field of palliative care in each OPCARE9 country.

  3. Consists in a selection of qualitative techniques for systematic text analysis

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Acknowledgments

OPCARE9 is funded by the European Commission’s Seventh Framework Programme (contract number: HEALTH-F2-2008-202112) with the aim of improving care in the last days of life by systematically identifying existing knowledge as well as knowledge gaps. The project aims to do this collaboratively across Europe and beyond to integrate knowledge from a range of health care environments and cultures and to avoid duplication of resource and effort. Project outputs include the dissemination of key findings and recommendations for further research and development for care in the last days of life. Further information on OPCARE9, its members, work packages, outputs and contact details, can be found online at www.mcpcil.org.uk/mcpcil/research-development/opcare9.

We would like to thank our OPCARE9 colleagues John Ellershaw, Carl Johan Furst, Maren Galushko, Carina Lundh Hagelin, Stephen Mason, Ovidiu Popa Velea, Natasja Raijmakers, Vanessa Romotzky, Ruthmarijke Smeding, Raymond Voltz and Lia van Zuylen for their valuable collaboration. We would also like to thank Kali Tal for her editorial work.

Conflict of interest

The authors declare that there is no conflict of interest and the study was conducted in accordance with the ethical standards. All authors have substantially contributed to data collection, data analysis and interpretation, drafting and revising the article and finally approved to the publication of the submitted version.

The first author has full control of all primary data and agrees to allow the journal to review the data if requested.

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Correspondence to Franzisca Domeisen Benedetti.

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Domeisen Benedetti, F., Ostgathe, C., Clark, J. et al. International palliative care experts’ view on phenomena indicating the last hours and days of life. Support Care Cancer 21, 1509–1517 (2013). https://doi.org/10.1007/s00520-012-1677-3

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  • DOI: https://doi.org/10.1007/s00520-012-1677-3

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