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EAPC Reference Group on Primary 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.

The EAPC Primary Care Reference Group had a most enthusiastic breakfast by Zoom at EAPC2021 conference on Thursday 7th October. Many points raised related to accessing palliative care. 

Additional discussion took place around:

  • improving uptake of early care planning / palliative care by people and carers, identifying this would help them  
  • training of professionals to start palliative care, Surprise ?, PIG, SPICT, NECPAL in different countries
  • caring for frail people – integrating palliative care, primary care, geriatrics and family caregivers

EAPC Blog Posts of Interest

COVID-19 and palliative care: Scale up provision in every country – especially in primary care

The Covid-19 pandemic is causing distressing deaths in terrible social isolation to tens of thousands. There is a compelling case to scale up palliative care to help people live and die as well as humanly possible. As palliative care enthusiasts, we must speak out now so that our countries, and practices, can grasp this moment in history.

We would like to highlight:  Reaching out to the world: Massive Open Online Course (MOOC) Improving palliative care in care homes  

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 erika.ring@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.

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

‘A Really Practical Handbook of Children’s Palliative Care for Nurses and Doctors Anywhere in the World’ by Justin Amery