Let’s make palliative care accessible to people of every language in Europe and beyond

Carlos Seiça Cardoso is a family physician, and currently a PhD student, from Portugal. He explains how he translated the Toolkit for Primary Palliative Care 2019 from English to Portuguese so that more people in the Portuguese speaking world might benefit from palliative care.

With additional comments from Scott Murray (Co-Chair of the EAPC Primary Palliative Care Reference Group) and Maria Bouri, MD, PhD, the post invites enthusiasts from other countries to translate the Toolkit to help local healthcare workers understand and deliver palliative care in primary care in every nation.

Countless people in every country of the world are still dying without palliative care and suffering unnecessary pain and undignified deaths. Primary care can help to deliver this basic human right by bringing palliative care to everyone.

In 2015, I was motivated by the first edition of the Primary Palliative Care Toolkit which explained the great potential of primary care to deliver palliative care. I then undertook a study of Portuguese Family Physicians and trainees about how they might better consult with patients with palliative needs.  When I shared this work with the EAPC Primary Care Reference group, Professor Scott Murray challenged me to carry out the translation of the latest 2019 edition into Portuguese. I grasped the opportunity!

The Toolkit is a four-page practical guide that aims to help both national leaders and healthcare workers in Europe and around the world to develop palliative care services in the primary care setting. It points out the opportunities for the involvement of primary care and proposes guidelines so that, in different countries, this involvement can be achieved effectively. It also provides links to many relevant documents of international interest, from national strategies for implementing palliative care, to validated tools for identifying and monitoring patients with a palliative care need.

Thus, it was easy to accept the challenge and to start the Toolkit translation process. I thank the Primary Care Reference Group for its invaluable help, specifically Erika Ring the group convener, who encouraged and supported the entire process, from a step-by-step review of the document to its formatting, making the whole process light and exciting.

The Portuguese translation of the Toolkit was very well accepted by the Portuguese Association of Palliative Care, and it has been shared by its members who received it with great enthusiasm. Indeed, all efforts to support the development of a more robust and effective palliative care network were equally welcomed by primary care leaders. 

We are excited about the possibilities that the Toolkit can have in the development of primary palliative care in Portuguese-speaking countries, but the challenge is even greater. So please help more countries, in Europe and around the world, to have this reference tool available.

Comments from Scott Murray, Co-chair of the EAPC Primary Care Reference Group, and Maria Bouri (who produced a Greek translation in 2021):

The updated version of the toolkit needs to be translated into many more languages to reach most people. We also need volunteers to update the previous version in French, German, and Italian.” 

Scott Murray

“I have worked in primary care for 21 years in a country where community palliative care is still missing, although much needed. I translated the Toolkit as the time was right to consider initiatives that would foster early access to palliative care at community level, including people’s homes. We hope that the Toolkit will help various parties in Greece organise the first decisive steps towards community palliative care.    

A further major contribution of the EAPC Toolkit could be to open up a space for dialogue by creating a network of motivated health professionals willing to ‘work through’ the meaning of words such as “palliative” and “hospice” in different countries, acknowledge the finite limits of semantics and welcome alterity – these might become sound foundations for developing palliative care services which patients welcome!”

Maria Bouri

A challenge to readers of the EAPC blog

Will you engage with the Toolkit and ‘take it’ to your country, your language, your patients and families with palliative needs? Accept the challenge, and the EAPC Primary Care Reference Group will support you to do this.  With a little effort, you can contribute an important step so that everyone can be ‘sheltered by the palliative care umbrella’. For more information, ideas and inspiration, check the EAPC Toolkit 2019 Video, including the Portuguese voiceover.

Join us at the EAPC Primary Care Reference Group webinar on 23 March 2022

Register here for a free webinar presented by members of our reference group on Wednesday, 23 March 2022 at 3pm CET. It will focus on practical aspects of translating the toolkit as well as clinical and public health indicators of palliative care in primary care. Everyone with an interest in primary palliative care is welcome!

Links and resources

More about the authors

Carlos Seiça Cardoso is a family physician and PhD Student in the Faculty of Medicine, University of Coimbra, Portugal..

Maria Bouri, PhD, MA Med Hum, Dip Pall Med, is a paediatrician working in the primary care public sector in Greece and is also involved in research and part-time teaching at the Department of Public and Community Health, University of West Attica.

Scott Murray, Emeritus Professor of Primary Palliative Care, the University of Edinburgh, Scotland, UK, and Chair of the EAPC Primary Palliative Care Reference Group. Follow Scott @scottamurrayed


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This entry was posted in EAPC Task Forces/Reference Groups, Palliative care in primary care and tagged . Bookmark the permalink.

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