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EAPC Reference Group on Primary Care

Welcome to new members of the group

We’d like to take this opportunity to introduce the two newest members of the EAPC Reference Group on Primary Care.

Tania Pastrana, MD PD, is the new chair of the group and brings her exceptional experience and insight into this role. Tania graduated as GP from Universidad de Caldas, Colombia. At the University of Munich, she studied Sociology, Social Anthropology and Social Psychology and obtained a doctorate in Psychosomatic Medicine and Medical Anthropology at the University of Munich and Max Planck Institute. She has a master in Community Health (University of Heidelberg, Germany) and other in Medical Education (University of Heidelberg, Germany). She concluded her postdoctoral training (Habilitation) in Global Palliative Care at the University of Aachen.
She was elected president at the Latin American Association for Palliative Care for two periods (2016- 2020) and was member of the executive board of the WHPCA (2016-2018) and is research and academic adviser at the International Association for Hospice and Palliative Care (IAHPC). She collaborates with the World Health Organization in different projects.
Tania works in development of palliative care, focusing in advocacy, research, education and access to (controlled) essential medicines. She is author of several journal articles and book chapters.
Tania lives in Aachen, Germany, where she works as Assistant Professor for Global Palliative Care. She loves dancing and travelling around the world.

Nicole Forster has taken over as the group’s convener. Nicole is currently working as the Irish Hospice Foundation’s Development Officer in Healthcare where she works specifically on the Dying Well at Home Programme as well as the Nurses for Night Care service which the Irish Hospice Foundation funds for non-cancer related life limiting illnesses.

Nicole’s background in social work, community development, adult education, and palliative care have supported her to work with and learn from individuals and families around areas such as housing insecurity, mental health, incarceration, grief, and loss. Nicole is currently completing a degree in Thanatology from King’s College at Western University in Canada.

Background

Palliative care still only reaches a minority of potential beneficiaries and is often introduced too late to prevent much distress. People with multi-morbidities and non-malignant conditions, frailty and dementia are still less likely to receive any form of palliative care than those with cancer. To gain universal coverage, a coordinated primary care and public health approach is necessary. Our vision is that palliative care is fully integrated in primary care systems internationally so that all patients have early access to a palliative care approach in the community (in their own home and in residential care facilities). We also believe that local communities should be involved in providing care and support.

Aims & Objectives

  1. Promote integration of primary care as an essential element of national palliative care frameworks, and palliative care as an essential element of national primary care frameworks.
  2. Foster training and educational development in timely palliative care for all primary care health professionals, at both undergraduate and graduate levels.
  3. Advocate that primary care practitioners providing palliative care have adequate resources and professional support to encourage safe and effective practice, and to promote health equity for people with life-threatening illnesses.
  4. Provide collegiate support to primary care practitioners as they develop evidence- based approaches to high quality primary palliative care.
  5. Support and develop research opportunities in primary palliative care – across EU countries.
  6. Identify mechanisms to support primary palliative care in all countries, with a specific focus on lower and middle income countries. 

How can I contribute?

If you are passionate about improving palliative care in the community in your country, please contact  our co-ordinator nicole.forster@hospicefoundation.ie to register as a member of the wider group. 

We are also specifically looking for national representatives from every country in Europe, and currently lack these in the following countries: Albania, Andorra, Austria, Azerbaijan, Belarus, Bulgaria, Czech Republic, Estonia, Georgia, Greece, Latvia, Moldova, Montenegro, Russia, Serbia, Slovakia, Ukraine.

If you are willing to consider taking on this role please contact Sebastien Moine.

Professor Scott A. Murray

Chair

University of Edinburgh, Scotland
to contact by email please click here
Twitter: @scottamurrayed

Dr Sebastian Moine

Co-Chair & link to EAPC Board

Université Paris 13 Nord, Bobigny
to contact by email please click here
Twitter: @s_moine

Executive Group members:

  • Dr Yvonne Engels, The Netherlands
  • Professor Julia Downing, UK and Uganda
  • Dr Steffen Eychmueller, Switzerland
  •  Dr Jordi Amblas, Spain
  • Dr Kirsty Boyd, UK
  • Dr Yasemin Kılıc, Turkey
  • Dr Alan Barnard, South Africa
  • Dr Maurizio Cancian, Italy

We have a membership list of 92 people from most European countries, all committed to the aims of the group. Permission to store contact details re-confirmed in 2020.

Partners:

  • EAPC Board of Directors  
  • EAPC Reference Group on Public Health and Palliative Care
  • World Health Organization (WHO)
  • International Children’s palliative Care Network (ICPCN)
  • International Association for Hospice and Palliative Care (IAHPC)
  • World Organisation of Family Doctors (WONCA)
  • International Primary Palliative Care Network (IPPCN)
  • European Forum for Primary Care (EFPC)
  • European research networks and other national and academic bodies 

Workplan

  • Encourage and support Palliative Care and Primary Care leaders in Europe

  • Identify core competencies in education and training for primary care professionals

  • Promote activities/sessions on primary palliative care in all EAPC sponsored conferences and primary care conferences

  • Participate in the WHO Technical Advisory Group (TAG) to input into manuals to help operationalise palliative care in the community.

  • In European countries not involved in the previous Taskforce, identify and support one or more key professional leaders to scope the barriers/facilitators

  • Produce an updated/ expanded toolkit to enhance 1) timely identification, 2) assessment, 3) care planning, 4) evaluation in primary care

  • Start international, collaborative small-scale research and student exchange projects including publication of reviews of European developments.   

  • Develop collaboration with organisations and countries outside Europe to help develop primary palliative care.

Planned Activities 2021

  1. Continue rolling out the implementation of the Primary Palliative Care Toolkit to all European countries and beyond. Seek to update the 2015 French, German and Italian versions, and add newly translated versions of the latest Toolkit and videos.
  2. Support strategic advocacy and developments of primary palliative care with regional WHO and regional and national palliative care bodies.
  3. Supporting teaching and training with core skills and knowledge for primary palliative care – identify, assessment, planning and communicating.
  4. Train generalists to identify palliative care needs, promote training with tools like PIG and SPICT.
  5. Consider supporting a MOOC (Massive Online Course) about palliative care in the community.
  6. Combined/collaborative research on communication, paediatrics, nursing, primary/secondary care.

Webinar  March 23 2022,  3 to 4.30 CET

Helping countries across Europe promote, develop and evaluate Palliative Care in Primary Health Care

Chairpersons:   Professor Scott Murray, UK and Dr Chamath Fernando, Sri Lanka

Presentations:

  1. Why not develop, translate and apply the EAPC Primary Palliative Care Toolkit in your country?  Dr Carlos Seiça Cardoso, who produced a Portuguese version in 2021.
  2. How using the EAPC Toolkit might open up a space for dialogue to ‘work through’ the meaning of words “palliative” and “hospice” in different countries  Dr Maria Bouri, who produced a Greek translation  in 2021.
  3. Overview of key outcome measures to evaluate the access of patients to early palliative care in primary care. Dr Tania Pastrana, Germany 
  4. What are the most relevant country-level indicators for primary palliative care for use to promote service, education and policy developments in all countries?  Eduardo Garralda, (Spain) who helped compile the EAPC Atlas of Palliative care in Europe, ATLANTES Global Observatory of Palliative Care.

Discussion and Q&A

Click on the menu button in the right hand corner of the video below to see the full playlist.

Publications

Munday D, Boyd K, Jeba J, et al. Defining primary palliative care for universal health
coverage. Lancet 2019; 394: 621–622 (doi: 10.1016/S0140-6736(19)31830-6)

Murray SA, Mitchell S, Boyd K, et al. Palliative care: training the primary care workforce is more important than rebranding. BMJ 2019; 365: l4119 (doi: 10.1136/bmj.l4119)

Mitchell S, Tan A, Moine S, et al. Primary palliative care needs urgent attention. BMJ 2019; 365: l1827 (doi: 10.1136/BMJ.L1827)

Ermers, D. et al., (2021) “Timely identification of patients in need of palliative care using the Double Surprise Question: A prospective study on outpatients with cancer” , Palliative Medicine, Vol. 35(3), pp592–602. https://doi.org/10.1177/0269216320986720

Dujardin J, Schuurmans J, Westerduin D, Wichmann A, Engels Y. The COVID-19 pandemic: a tipping point for advance care planning? Experiences of general practitioners. Accepted for Publication. Pall Med 2021.

Mason B, Kerssens JJ, Stoddart A, et al (2020) “Unscheduled and out-of-hours care for people in their last year of life in : a retrospective cohort analysis of national datasets” BMJ Open, 10:e041888. doi: 10.1136/bmjopen-2020-041888. Significance: High frequency of acute care needed out-of-hours for people in last year of life in UK.

 

  
Palliative care and multi-morbidity: 4 key steps

Palliative care and multimorbidity video

 
EAPC Infographic (2019)Developing Palliative Care in Primary Care infographic  

EAPC Toolkit (2019)

EAPC Toolkit 2019

Portuguese translation

Greek translation

 
EAPC Toolkit 2019 VideoPortuguese Video available here
EAPC Report (2015)Promoting palliative care in the community- producing a toolkit to improve and develop primary palliative care in different countries internationally 
Original article (Palliative Medicine, 2015)Promoting palliative care in the community: Production of the primary palliative care toolkit by the European Association of Palliative Care Taskforce in primary palliative care view here 
EAPC Toolkit (2014)Toolkit for the development of palliative care in the community

French translation

German translation

Italian translation