CARE – a show about the people who bring life to days

In this series, The Arts in Palliative Care, we look at how the arts in palliative care settings can be a powerful and effective way of addressing the practical, psychological, social and spiritual issues that face people at the end of their lives.

An Irish hospice teamed up with a theatre company resulting in a remarkable show about daily hospice life. Regina McQuillan, Medical Director, St Francis Hospice, Dublin, and Sarah Jane Shiels and Sophie Motley of the WillFredd Theatre Company, explain some of the practical and ethical challenges they faced in creating the show.

Dr Regina McQuillan

WillFredd as a theatre company works by integrating into a community. CARE resulted from the integration of director, Sophie Motley, and designer, Sarah Jane, Shiels into the working lives of palliative care workers over the course of 14 months, by visiting the canteen and getting to know the staff.

Working together, we had specific conversations with the staff and interviewed doctors, nurses, care assistants, occupational therapists, physiotherapists, complementary therapists, chaplains, volunteers and security staff.  Two work-in-progress pieces were developed, as the company felt strongly that the work should be shown to hospice staff and the artistic community and feedback received.

The biggest challenge was how to negotiate patient confidentiality. WillFredd’s work engages constantly with a community and, for the first time, WillFredd had to limit the access of the group as a whole to some of the information. It is an interesting balance to consider when working in arts and health. We asked one of the doctors in the hospice to invent a character and case study for us, and hence, our main character, Anne, came  into being. In this way, the piece was factually accurate, containing real and typical information, but it was also invented so it did not breach any confidentiality.

Sarah Jane Shiels

Another challenge was where to place the patient. In the hospice setting, the patient is the focus. There have been many theatrical productions dealing with end-of-life care, and the patient is very often the main character. With CARE, we wanted to foreground the people working for the patient. We found that whenever we asked a performer to play the part of the patient, the focus immediately went straight to them and our intention was lost. Our solution was to use a mannequin as our patient – ‘Anne’ – an inanimate object whose importance and presence onstage was the result of the attitudes of the performers around her. She was at once their patient and their tool, she could be cared for and discarded as a prop when needed.

CARE opened in Dublin in 2014, and then toured nationally around Ireland, significantly to both theatres and hospices in each county we visited. WillFredd hosted numerous post-show discussions, some focusing on the artistic elements of the show, others specifically on the medical and palliative care.

Sophie Motley

Through long-term engagement with the palliative care community, WillFredd created a new audience who attended the final production. Our artistic representation received positive feedback from the healthcare workers. Many of our audience attended due to a family or friends receiving palliative care. We gained very positive feedback from this audience demographic, many of whom found themselves very moved and at the same time surprised at how much humour was in the production.


Read more posts in the Arts and Palliative Care series on the EAPC Blog.

Posted in PATIENT & FAMILY CARE, The Arts in palliative care | Tagged , , , | 1 Comment

Final programme for the 10th EAPC World Research Congress now online …


Ragnhild Green Helgås, on behalf of the scientific committee, gives an update on preparations for the upcoming world research congress in Bern.

10th EAPC World Research CongressThe 10th World Research Congress of the EAPC in Bern, Switzerland, is just a couple of months away, and the final programme is now available on the congress website.

Remember the early bird registration deadline: Thursday 15 March!

Ragnhild Green Helgås 10th EAPC World Research Congress

Ragnhild Green Helgås

As there are some new concepts this year, we recommend taking a few minutes to get to know the programme. That way you can make sure you don’t miss out on your favourite topics.

Streams of topics

The oral, abstract-driven part of the programme is organised in ‘streams’. These are overall topics reappearing in all parallel sessions, allowing participants to follow a certain topic throughout the congress. The streams are colour coded and so it’s easy to navigate.

The three main topics are:

  • Cancer and palliative care
  • Public health and policy
  • Ageing and palliative care.

In addition, there will be some freestanding sessions with a diversity of topics, and two method discussion sessions – one focusing on randomized controlled trials, and one addressing qualitative research methods.

Presentation categories

A total of 897 abstracts were submitted, from 55 countries. Out of these, 63 were rejected due to a low average review score, and one was withdrawn. The abstracts will be presented in the following categories:

Plenary abstracts

Five of the highest-ranked abstracts have been selected for presentation in a plenary session.

Free communication abstracts

More than 120 abstracts will be presented in parallel sessions. There are in total 22 abstract-driven parallel sessions, including two method discussion sessions and a Swiss session consisting of submitted abstracts from local researchers.

Poster presentations

Poster presentations are an essential cornerstone of every EAPC congress and this year is no exception! About 400 abstracts will be presented in a poster exhibition, which will be displayed in one set during the congress. Poster presenters will be available for questions and discussions several times during the congress – you will find information about their presence on each poster.

Print only

Owing to capacity limitations, about 300 abstracts, which did not receive a high enough score to get a poster presentation, will be presented as print only. These abstracts will be published in the online abstract book, but will not be presented in any other way during the congress.

Join us in Bern

Whether this is your first research congress or you’re a veteran of many EAPC World Research Congresses, we’re confident you will develop new skills and strengthen your capabilities with innovative tools and evidence-based methods. We look forward to welcoming you to Bern in May, to sharing the latest research and to building strong lasting connections with you all.

And even if you can’t attend the congress in person, we hope you will still feel a part of it by joining us on Twitter at #EAPC2018 and on the EAPC Blog where we plan to publish some posts live from the congress.


  • View or download the programme here.
  • Register here.
  • For all other information about the congress, click here.
  • Follow us on Twitter @EAPCvzw – our official congress hashtag is #EAPC2018
  • Check out the EAPC Blog next week when Julie Ling and Sheila Payne write about a Special EAPC Seminar organised jointly with the PACE projectPalliative Care for Older People in Care and Nursing Homes in Europe.
Posted in EAPC ACTIVITIES, EAPC World Research Congresses, RESEARCH | Tagged | Leave a comment

The next Italian challenge: Primary palliative care development

Caterina Magnani is a physician specialized in anesthesiology and general practice, and Head of Research at Antea Palliative Care Centre in Rome, Italy. Together with colleagues of Antea, she has translated the ‘EAPC Primary Palliative Care Toolkit’ into Italian. Carlo Peruselli, as a collective member of the EAPC, has reviewed the translated document.

Here, she explains why primary palliative care development is currently one of the main challenges in Italy.

Dr Caterina Magnani of Antea

Dr Caterina Magnani

In March 2017, the Italian Ministry of Health published a document that reports an updated version of the ‘Essential Health Care Levels’ 1 that must be provided by the National Health Care System. Two levels of home-based palliative care programmes have been defined: the ‘basic’ and the ‘specialist’. A ‘basic’ palliative care programme, as defined by the Italian official document, is a series of interventions, coordinated by the general practitioner (GP), aimed to ensure the palliative approach. It is quite similar to the ‘primary palliative care’ (PPC) concept and it provides optimal symptom management and adequate communication with patients and families. 2 Instead, a ‘specialist’ palliative care programme is defined as high-intensity health assistance, delivered by dedicated multi-professional staff and reserved exclusively to patients with complex symptom management and clinical instability. Specialist palliative care teams are composed of physicians and nurses with a high level of competence in palliative care, social workers, a psychologist and other healthcare professionals with experience in palliative care.

Now, thanks to this change, Italy has to face a big challenge: the development of a primary palliative care culture!

Furthermore, global average life expectancy has increased and people are living longer with a rise of chronic illness so that many patients will need skilled primary palliative care.

Antea is a non-profit organisation that has provided palliative care in Rome since 1987, education programmes and clinical research. Now, we plan to encourage the spread of an early palliative care approach through a project aimed at implementing educational initiatives.

First, we decided to translate into Italian the ‘EAPC Toolkit for the development of Palliative Care in the community’, 3 which we firmly believe enables individuals and organizations to implement innovative projects in primary palliative care (PPC). Anyone who is interested in promoting PPC development should use the toolkit questions to get a better understanding of barriers and opportunities for PPC, and its dissemination throughout our country. (See ‘Links and Resources’ below to download the Italian translation of the toolkit).

Next steps …

The next step of our project is to provide an Italian version of the ‘Supportive and Palliative Care Indicators Tool’ (SPICT),4 in order to help physicians to identify patients who could benefit from an early supportive and palliative care approach. We also plan to start training programmes on symptom management and good communication techniques facilitated by expert palliative care clinicians and educators. This training will target groups of GPs, nurses and hospital medical specialists (oncology, neurology, geriatrics and general medicine departments), to improve their skills in early identification of patients with palliative care needs, pain and other symptom management and good communication. We plan to run the courses in GPs’ medical centres and acute care hospitals so that everyone can participate without moving from the workplace.

Our project is only at the beginning but we firmly believe that primary palliative care is the first, indispensable step towards the improvement of quality of life of people with deteriorating health,5 and we are highly motivated to continue our mission.


  1. Decreto del presidente del consiglio dei ministri 12 gennaio 2017. Definizione e aggiornamento dei livelli essenziali di assistenza, di cui all’articolo 1, comma 7, del decreto legislativo 30 dicembre 1992, n. 502. (17A02015) G.U. Serie Generale n. 65 del 18 marzo 2017.
  2. Scaccabarozzi G, Lovaglio PG, Limonta F, Floriani M, Pellegrini G. Quality assessment of palliative home care in Italy. J Eval Clin Pract. 2017 Aug;23(4):725-733.
  3. Murray SA, Firth A, Schneider N, Van den Eynden B, Gomez-Batiste X, Brogaard T et al. 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. Palliat Med. 2015 Feb; 29 (2):101.
  4. Highet G, Crawford D, Murray SA, Boyd K. Development and evaluation of the Supportive and Palliative Care Indicators Tool (SPICT): a mixed-methods study. BMJ Support Palliat Care. 2014 Sep; 4(3): 285-90.
  5. Murray SA, Kendall M, Mitchell G, Moine S, Amblàs-Novellas J, Boyd K. Palliative care from diagnosis to death. BMJ. 2017 Feb 27; 356: j878.

Links and resources

Tip: If you have difficulty in downloading any documents from the EAPC website please make sure that you first LOGIN (if you are an EAPC member). If you are not a member, you may REGISTER free of charge to access selected publications. You can login or register on the EAPC website.

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Answering seven questions about the state of palliative care for older persons in your country can influence global policy

IAHPC is coordinating information on palliative care for older people and urgently needs the help of EAPC members and readers. Katherine Pettus, PhD, Advocacy Officer, International Association for Hospice and Palliative Care (IAHPC), explains how you can contribute.

Dr Katherine Pettus

This summer, the United Nations Open-Ended Working Group on Ageing (9th Session) (OEWGA9) will consider two Focus Areas; Palliative and Long-term care, and Autonomy and Independence. See my 2017 EAPC blog post on the 8th Session for background on this year’s meeting. The upcoming session provides palliative care practitioners and advocates with an unprecedented opportunity to build dynamic relationships with the Health and Social Service ministries in your countries that oversee and fund the care of older adults. 

Please assume that your country Missions and delegations at the UN at OEWGA9 will not know how to describe the situation of palliative care for older persons in your countries. It is up to you to educate them so they can participate accurately in the floor debates.

They will need your help! And IAHPC needs your help because we are coordinating the inputs of all our partners on the palliative care questions for OEWGA9.

The questions and suggestions on how to answer them are listed below. If you can support your answers with research, all the better, but this is a political and informational process, rather than an academic one. It is just as important to note where you cannot find answers to the questions, as to provide substantive answers. Highlighting gaps in protection and standard setting will be key to the discussions.

I will be representing our membership and partners at OEWGA9. My deadline to compile everyone’s answers is 9 April 2018. Please email your input on or before Monday, 26 March 2018 to Katherine Pettus

OEWGA9This link is to a reference list, which is mostly European reviews, on the topic of older persons’ right to long-term and palliative care. I will appreciate additions!

It is important to coordinate this effort through regional and national associations, to reduce duplication and unnecessary work. IAHPC is also working with Age Platform Europe.

The Seven Guiding Questions, and help in finding answers

  1. In your country/region, how is palliative care defined in legal and policy frameworks? Search your Ministry of Health (MoH) website for a national policy or law that will contain a definition; ask contacts in the MoH, if you have them. Ask if your regional or national palliative care association has a definition, and if your government has adopted it.
  2. What are the specific needs and challenges facing older persons regarding endoflife care? You probably know from your own practice and knowledge. Ask colleagues who work in nursing homes. Check with your national or regional association of geriatricians.
  3.  Are there studies, data, and evidence available? As in Question 2. Ask your national geriatric/gerontology association.
  4. To what extent is palliative care available to all older persons on a nondiscriminatory basis? Survey nursing homes and geriatricians, or mine national and international websites on geriatrics.
  5. How is palliative care provided in relation to longterm care as described above and other support services for older persons? Is palliative care provided in nursing homes? Apply the suggestions for question 4.
  6. Are there good practices available in terms of longterm care and palliative care? Check with social service and justice ministries. Contact the ministry responsible for older persons in your country and set up an appointment to discuss this question with them. Visit some nursing homes.
  7. What are lessons learned from human rights perspectives? This means: Is there abuse and neglect? Are older persons over-medicated, or denied appropriate medical treatment? Check with your national human rights institute/organization (NHRI). Find more information here.

Thank you for your help.



Posted in ADVOCACY & POLICY | Tagged , | Leave a comment

Discovering people’s strengths and resources at the end of life

David Oliviere, Social Worker, Counsellor and Educationalist, describes the influence of Elisabeth Earnshaw-Smith on social work in palliative care – a backgrounder to David’s longer article in the January/February issue of the European Journal of Palliative Care.

David Oliviere

Who was it who held out their hand to show you the way into palliative care? Who held your hand maybe to teach you the skills to weather hard moments? Who had trodden the path before you?

Most of us know someone who acted as a mentor, as we learned the craft of palliative care, who inspired us, who went the extra mile in believing in us and gave us the confidence that we could do it!

For me, when I was appointed to set up the social work service at the North London Hospice in 1985, it was Elisabeth Earnshaw-Smith, first Director of Social Work at St Christopher’s Hospice, London.

“Palliative care is all about discovering people’s strengths and resources” Elisabeth told me when I entered the field. She was appointed by Cicely Saunders in 1979 and set about creating a family approach to psycho-social palliative care that has now spread worldwide. Her pioneering work is at the core of what it is to be a palliative care social worker and was further developed by the multi-professional team at St Christopher’s. The team that made ‘the family as the unit of care’ a reality through strategies from family therapy practice, such as family trees/genograms, family meetings and emphasising the part family dynamics play in the crisis of illness, death and bereavement.

Naming ‘the elephant in the room’

Elisabeth influenced not only the multi-professional team at St Christopher’s but also other palliative care workers through her teaching and publication. Several doctors and nurses have told me how she inspired and influenced them. Dr Tony O’Brien, Consultant Physician in Palliative Medicine, Cork, Ireland, talked about Elisabeth as the first social worker he had met and about her skill in clinical meetings in naming the unspoken, such as unacknowledged feelings in families and staff (O’Brien, 2013).

Elisabeth Earnshaw-Smith: her pioneering work is at the core of what it is to be a palliative care social worker.
Photo with kind permission of Elisabeth Earnshaw-Smith and the Association of Palliative Care Social Workers

Elisabeth, the person, the professional

As the number of palliative care social workers grew in the UK through the 1980s, Elisabeth saw many colleagues into the work and ‘strengths and resources’ became a sort of mantra. She initiated the Association of Palliative Care Social Workers; she empowered many of us to speak and write about our emerging work. She consistently affirmed our input.

Elegant, her characteristic white hair in a bun, speaking the Queen’s English precisely and displaying impeccable social skills, those of us young social workers giggled that we were in the presence of royalty! After her retirement, I continued to meet her in the Charing Cross Hotel, London and, over cucumber sandwiches (where we and others had created the constitution for the professional Association), listened to her wisdom and advice about the world.

In the past few years, Jo Hockley, ex-colleague nurse and I have been visiting Elisabeth in her nursing home where, at 88, she receives excellent compassionate care and family support, the sort she advocated …

Palliative care social work

Social work is a crucial window on the world of palliative care. Social work’s view of the patient, in their social context, brings a vital, often refreshing and unheard perspective to the assessments and interventions offered by the multi-disciplinary team. The social worker is so often at the interface between the clinical team and the social world of the patient, their relationships, networks and resources (Earnshaw-Smith in Clark et al, 2005; Oliviere, 2001).


Clark D, Small N, Wright M, Winslow M, Hughes N (2005) A bit of heaven for the few. An oral history of the modern hospice movement in the United Kingdom. Lancaster: Observatory Publications, pp 163-166.

O’Brien T (2013) Social Work: looking inwards; looking outwards. Paper EAPC Congress Prague.

Oliviere D (2001) The Social Worker in Palliative Care – the ‘eccentric’ role. Progress in Palliative Care Vol 9 (6): 237-241.

Links and Resources

Read the full article in the European Journal of Palliative Care

This post relates to ‘Social Work in Palliative Care: the influence of Elisabeth Earnshaw-Smith. Discovering people’s strengths and resources at the end of life’ by David Oliviere and is published in the January/February 2018 edition of the European Journal of Palliative Care (EJPC) (vol. 25 (1).

If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

Read more posts relating to articles published in the European Journal of Palliative Care on the EAPC Blog.

Posted in Bereavement, EAPC-LINKED JOURNALS, European Journal of Palliative Care, INTERVIEWS & TRIBUTES, PSYCHO-SOCIAL ISSUES, Social work | Tagged | 1 Comment

New videos for clinicians, teachers, researchers and patients to show how early palliative care might work for people with all illnesses

Big changes have recently been made to the web page of the European Association for Palliative Care (EAPC) Primary Care Reference Group. Scott Murray and Sébastien Moine, Co-chairs of the Primary Care Reference Group, unveil some of the great resources now available on their web page and elsewhere in support of early palliative care. 

Prof Scott Murray

Dr Sébastien Moine

EAPC Primary Care Reference Group members last year produced a short video for health and allied health professionals to illustrate when to trigger an early palliative care approach in patients with different illnesses. That video, based on our BMJ analysis in 2017, was very popular on Facebook and Youtube. We have now produced a user guide with the video to help you use it to teach colleagues how to identify patients for palliative care or advance care planning. Moreover, translations in French, Spanish, Brazilian Portuguese and Italian are now available from our updated web page.

‘How to live and die well’ – a video for the general public

Also, now available on our web page is a version of this video to use with the general public or patients, which is entitled ‘How to live and die well’. It comes with documents that are useful to help individuals view the video and also to help you facilitate or run a group discussion with the video. This was recently publicised in a BMJ blog entitled “To boldly go”. We have made this video so that many people might use it to explain to the general public about the benefits of thinking ahead and planning for what might happen towards the end of life. This is to help us promote a better public understanding of what living and dying with different conditions means, and how we all have a role to play to make things as good as possible. 

Toolkit for the development of palliative care in the community

We have also produced translations of our toolkit to help palliative care specialists or generalists promote palliative care in the community. The toolkit is now available in French, German, Romanian, Croatian, Italian and Brazilian Portuguese. We recommend you to have a look at this to see how it highlights the four main areas to consider when promoting palliative care in the community: useful policies, adequate services, education, and availability of medications. The French and German translations of the toolkit are downloadable from our web page, and we are keen to support EAPC members use these in their own countries.

Good progress is also being made with various tools to help identify people who might benefit from palliative care. The Supportive and Palliative Care Indicator Tool (SPICT) has now been translated into 10 languages. We held a most fruitful inaugural SPICT International Conference in Edinburgh on 2nd Feb when 100 participants presented developments from Australia, Brazil, Germany, Denmark, Nepal and England. Please see our web page for details also about other identification tools such as PIG, RADPAC, NECPAL.

Let’s get palliative care integrated into the care of people with all conditions in all countries! Let’s help the general public understand how to live and die as well as possible!

Looking forward to seeing everyone at our parallel session and open meeting on Friday 25th May in Bern at the 10th EAPC World Research Congress.


  • Follow Prof Scott Murray @scottamurrayed 
  • Follow Dr Sébastien Moine @s_moine 
  • EAPC Primary Care Reference Group.
  • Coming soon on the EAPC Blog: Dr Caterina Magnani introduces the new Italian translation of the ‘EAPC Toolkit for the development of palliative care in the community’.
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Winter Summit in Palliative Medicine – Heart and Spirit in Palliative Care

Dr Piotr Sobanski, Chair of the European Association for Palliative Care Task Force on Palliative Care for People with Heart Disease, reports on a recent conference held in Poland that could be the first step for a joint programme of care for people with heart disease.

Provision of palliative care for people with heart disease demands cooperation and dialogue between the specialities involved in the care. Nurses and physicians representing palliative care and cardiology, as well as representatives of non-medical professions such as ethicists, spiritual care specialists and physiotherapists, met recently in Bydgoszcz, Poland, at a workshop and conference: Winter Summit in Palliative Medicine.

Lecturers and conference participants at the Winter Summit in Palliative Medicine.

The leading topics were palliative care for people with heart failure and spiritual care in palliative care. The event was organised under the auspices of the European Association for Palliative Care (EAPC), the Heart Failure Association of the Polish Cardiac Society, the Polish Association for Spiritual Care in Medicine, and three Polish medical universities: Nicolaus Copernicus University in Torun, Collegium Medicum in Bydgoszcz, Medical University in Gdansk, and Collegium Medicum of Jagiellonian University in Krakow.

During the first day, Professor Christina Puchalski from George Washington University, Washington, DC, US, delivered a workshop to a group of Polish teachers of spirituality for students in medical universities. The second part of the day was dedicated to palliative care for people with heart failure. The members of the EAPC Task Force on Palliative Care for People with Heart Failure present at the conference – Prof. Sarah Goodlin (US), Prof. Malgorzata Krajnik (Poland), Prof. Philip Larkin (Ireland), Prof. Manuel Martinez-Selles (Spain) and Dr Piotr Sobanski (Switzerland) – analysed the progress of current work and discussed upcoming activities of the task force. They strengthened the interprofessional and interdisciplinary group of experts participating in the workshop, working both in cardiology (representing the most prominent Polish heart failure centres) and palliative care. During this workshop, the needs for palliative care provision, possible structures of care and the conditions needed to organise the requisite care were discussed.

Declaration calls for improved access to palliative care for people with heart failure

At the end of the meeting, participants signed a declaration stressing the urgent need for the improvement of access to palliative care for people with heart failure. The declaration received the endorsement of Prof. Philip Larkin, the President of the EAPC, the Heart Failure Association of the Polish Cardiac Society, the Polish Society for Palliative Medicine, the Polish Association for Spiritual Care in Medicine, and the Polish Society of Internal Medicine. The process to seek EAPC endorsement for this declaration is now under way. The broad endorsement received by the declaration shows how strongly medical societies in Poland appreciate the urgent need to improve the provision of palliative care for people with heart failure.

During the summit, invited lecturers shared with conference participants their expertise in the field of spirituality, palliative care and cardiology. The lively discussions on the presented topics, and the interest the participants expressed in similar future congresses gathering together the palliative and cardiology communities, shows the importance of the dialogue between the disciplines to facilitate cooperation.

We are convinced that the conference has been the very first step in a new future for a joint programme of care for people with heart disease.

Links and resources

Posted in EAPC Taskforces/special projects, NATIONAL & INTERNATIONAL REPORTS | Tagged | 2 Comments