In the 12 years since the publication of the original EAPC recommendations on standards and norms, palliative care has expanded and increased its reach in many countries of Europe, resulting in the need for an updated and revised edition. Sheila Payne, Emeritus Professor, International Observatory on End of Life Care, Lancaster University, United Kingdom, Christoph Ostgathe, President of the EAPC, and Julie Ling, Chief Executive Officer, EAPC, describe the Delphi study they used and unveil what is new in the latest edition just published in ‘Palliative Medicine’.
The International Observatory on End of Life Care, Lancaster University in collaboration with the EAPC, enthusiastically embraced the opportunity to update and revise the original EAPC recommendations on standards and norms for palliative care in Europe, published ten years ago.1,2 The first set of recommendations had been rigorously developed using a Delphi technique that enables a consensus to be established amongst key stakeholders. They proved to be useful in a number of ways including advocacy, guiding the development of new services, enhancing established ones and benchmarking. They were translated into eight languages and made freely available on the EAPC website.
Since then, palliative care has expanded and increased its reach in many countries. Therefore, the EAPC Board of Directors decided that it was time to determine to what extent these recommendations were still valid and useful, and what needed to be updated and revised.
As before, we used a Delphi technique which is a well-recognised way to elicit the views of stakeholders and to obtain consensus. We looked carefully at what had been published in the ten years from the original publication to when the new project was commissioned in 2020 and cross-checked the information with the previous recommendation statements. From this, we created an online questionnaire with both the ‘original statements’ and the new ones. We invited a key contact person from each of the EAPC-affiliated professional organisations based in Europe to participate. In all, we did three rounds of the survey, accepting as ‘consensus’, all statement responses greater than 75 per cent.
New topics included in the EAPC revised standards and norms
It was interesting to see that the majority of the original recommendations were still regarded as valid, and there was a strong endorsement of the EAPC and World Health Organization (WHO) definitions of palliative care. New topics include the emerging new sub-specialisations in palliative care in the fields of neonatal paediatrics and geriatric medicine, indicating that care extends across the lifespan. New recommendations also have implications for service quality improvements including advance care planning, enhancing open visiting, availability of essential medicines, better information exchange, including digital medical records, and more access to specialist equipment.
We are happy to report that these latest standards and norms published in Palliative Medicine are freely available to read, download and share. Of course, we know that they are not perfect, but they do enable palliative care organisations to move beyond the ‘Humpty Dumpty’ position, where there are no shared understandings and definitions between countries in the European region. We recognise that there remains great diversity and potential inequity in the provision of palliative care in Europe, both within and between countries. However, we hope that these recommendations may help patients and families gain access to better palliative care. Moreover, we suggest that in future patients and families are included as stakeholders in developing the next set of recommendations.
References
- Radbruch L, Payne S. White paper on standards and norms for hospice and palliative care in Europe: part 1. Eur J Palliat Care. 2009;16(6):278–89.
- Radbruch L, Payne S. White Paper on standards and norms for hospice and palliative care in Europe : part 2. Eur J Palliat Care. 2010;17(1):22–33.
Acknowledgements
The project was funded by the EAPC. We would like to thank Dr Andrew Harding and Dr Tom Williams from Lancaster University who worked on the project.
READ AND DOWNLOAD THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’
This post relates to the longer article, ‘Revised recommendations on standards and norms for palliative care in Europe from the European Association for Palliative Care (EAPC): A Delphi study’ by Payne, Hardin et al published in Palliative Medicine https://journals.sagepub.com/doi/10.1177/02692163221074547
EAPC MEMBERS CAN DOWNLOAD THE FULL ARTICLE FROM THE EAPC WEBSITE
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