The challenges and triumphs of developing a survey on palliative care for people with intellectual disabilities around the world


In a special series, EAPC task forces and reference groups that work on behalf of vulnerable communities explain what they are doing to enable equity in access to palliative care. Today’s Guest Writer is Irene Tuffrey-Wijne, Co-Chair of the European Association for Palliative Care (EAPC) Reference Group on Intellectual Disabilities.

Professor Irene Tuffrey-Wijne

If you had a patient or a relative/friend with intellectual disabilities (ID), what would be your main concern? Which areas of palliative care provision would be most difficult to get right? Symptom control? Truth-telling? Involving families and (nominated) next-of-kin? Working well with other services? Making sure that staff are trained and feel confident?

Meeting the needs of people with ID when they reach the end of life – and in bereavement – is difficult at the best of times. We know this from previous research, including the work of our EAPC Reference Group on Intellectual Disabilities that led to a white paper (2015). It included 13 norms for good practice across a range of areas. Those were aspirational norms, agreed with experts on countries across Europe. (EAPC Members can login to the EAPC website and download the white paper from here). 

That’s all well and good, but how easy or difficult is it for professionals and services in different parts of the world to meet those needs? Our EAPC Reference Group had been pondering this for a couple of years. Then the pandemic hit. Now the questions became even more urgent. This was no longer the best of times, but the worst of times. Dying was everywhere. We heard stories of people with intellectual disabilities falling through the net, but also stories of extraordinary care in difficult circumstances. How had Covid-19 affected the care of people with intellectual disabilities at the end of their life?

‘Palliative & End-of-life Care for People with Intellectual Disabilities & Covid-19: an international survey’ presented at EAPC 17th World Congress 2021. (View here if you registered for the congress).

There we were, 15 researchers from 10 countries in isolation, discovering that Zoom is as good (if not better) than meeting in-person at the occasional conference. We developed an online survey for health and social care professionals, with questions linked to the 13 norms. We asked whether they were able to meet each norm ALWAYS, NEVER or somewhere in-between, and whether the pandemic had made a difference to this. We also asked for examples or stories.

The survey was answered (either partially or fully) by more than 1,000 people, mostly professionals in health and social care services. They came from 20 countries, mostly in Northern Europe but also in Asia, Canada and Australia.

Around 250 respondents had supported someone with ID who had died during the pandemic. We were surprised to find that most of these (around two thirds) didn’t think Covid had made a difference or didn’t know. Perhaps that shows that the challenges transcend this difficult time of the pandemic.

We are still analysing the data but here are some headline results.

  • MOST likely to go well: Access to hospital when needed.
  • LEAST likely to go well: Involving the person in decisions; working together with other services.

Experiences varied widely, and getting good care seemed to be a bit of a postcode lottery in many countries.

“The specialized palliative care team was top! They always come when we call and the support was perfect!” Norway

“Lack of knowledge and experience in caring for this population is a barrier in providing patient focused care.” Canada

Our survey was by no means perfect, but it shows us some important pointers for further research. Working across national borders has been a pleasure. We found that doing an international survey of this nature is entirely possible, and we should do more. We should really include the views of families and people with ID themselves, for example.

Links and resources

Next week on the EAPC blog, our guest writers are Dr Mary Turner and Dr Aline Chassagne, Co-Chairs of the EAPC Task Force on Mapping Palliative Care for Prisoners in Europe.

Posted in ADVOCACY & POLICY, EAPC ACTIVITIES, EAPC Task Forces/Reference Groups, Intellectual disabilities, Minority Communities, World Hospice & Palliative Care Day | 1 Comment

Improving patient and family care using patient centred outcome measures – from development to implementation into practice: An interview with Dr Bárbara Antunes, winner of the 2021 EAPC Early Researcher Award 

Clique aqui para a versão em português

Live from EAPC 17TH World Research Congress Online…

Highlights of every European Association for Palliative Care (EAPC) Congress are the EAPC Researcher Awards. Awarded jointly by the EAPC and the EAPC Research Network (RN), these awards recognise and support the work of scientists and clinicians in the field of palliative care who make an outstanding contribution to research and clinical practice.

We talk to Bárbara Antunes, MSc, PhD, Clinical & Health Psychology Specialist in the Department of Public Health & Primary Care at the University of Cambridge, UK, about the work that has led to her winning the 2021 EAPC Early Researcher Award 2021

What, or who, was your inspiration for a career in palliative care?   

Dr Bárbara Antunes

Bárbara Antunes: I didn’t choose to pursue a career in palliative care, I always say I think the field chose me! Back in 2008 I was working part time as a research assistant helping a PhD student collect data. One day, she asked me to accompany her to a meeting with her co-supervisor. I reluctantly said yes, as I really didn’t think I would have much to contribute. By the end of the meeting, he asked if one of us might be interested in a research assistant post for a new European-funded project. Given that my colleague couldn’t do it as she was in the middle of her PhD, and having absolutely no idea of where or what I was getting myself into, I answered with a very energetic “I would!” and that’s how I got to work in the ‘Reflecting the Positive Diversities of European Priorities for Research and Measurement in End-of-life Care (PRISMA)’ project through the University of Coimbra and led by the Cicely Saunders Institute. That was my first experience with palliative care research. I met incredible people, from different countries, different backgrounds, with different experiences and expertise, all working together for the same purpose. That really inspired me to continue in that path.

Can you tell us briefly about the research that has led to your winning this award and some of the main findings?  

BA: most of my research work in palliative care has been around outcome measurement and how to use patient-centred outcome measures in clinical practice and research. I’ve been involved in developing measures, translating and adapting them to the population of interest and testing their psychometric and screening properties. There are a lot of questions one can answer with data collected in daily practice, not just to use it immediately and benefit the individual patient, but also to do research and perform audits. One example would be to use one or two items of such a measure, in this case, the Palliative Care Outcome Scale, to screen for depression (a highly prevalent palliative need) in real time, or in other words, during the consultation, rather than having to use a full questionnaire just for that issue. We repeated that study in different European populations and had the same result. That has given us the confidence to use this measure, and those items in particular, to screen for depression. Also, my systematic review ‘Implementing patient-reported outcome measures in palliative care clinical practice: A systematic review of facilitators and barriers’ provided some insight into the main issues of implementing these measures in palliative care clinical practice and recommendations on how one might approach it. Even though not all recommendations are suitable for all services and settings, it provides a number of considerations to take into account when planning it. There are a few studies published now which used those recommendations and they appear to have been useful.  

Last year during the pandemic, you published the first nationwide electronic survey on changes of anticipatory prescribing practice. Can you tell us about that research please? 

BA: Before I joined the group in January 2020, the Cambridge Palliative & End of Life Research Group was already working on anticipatory prescribing (injectable medications prescribed ahead of clinical need, “just in case”, for administration by nurses and doctors if symptoms arise in the final days of life). This research, mostly through the work of PhD student Ben Bowers, Dr Richella Ryan and Professor Stephen Barclay, had shown the lack of evidence there is in terms of best anticipatory prescribing practice. When the first COVID wave hit, we felt it was paramount to understand what was happening to anticipatory prescribing practice, mainly trying to understand what changes were occurring in different services across the UK and Ireland. We learned that changes were indeed happening, depending on resources available, existing protocols with pharmacies, whether there were guidelines or if there was implementation of guidelines and other factors. The main changes reported by 261 respondents from community, hospice and hospital settings, were on routes of drug administration (47%), drugs prescribed (38%), total quantities prescribed (35%), consideration of drug administration by informal caregivers (37%) and remote clinical contact with patients (63%). The main topics in the open question item were around the need for recommendations for regulatory changes to permit drug repurposing, wider and easier community access, and the need to recycle unused drugs returned to pharmacies. This study revealed that rapid changes in anticipatory prescribing practice were under consideration in many areas of the UK and Ireland and services were prepared and had contingency plans for different scenarios. For example, using buccal and sublingual routes rather than injectables and having informal caregivers involved in administration of anticipatory drugs, a common practice in some countries like Australia. In the future, it would be important to see what changes remain once the pandemic is over. There continues to be an evidence gap regarding best anticipatory prescribing practice and there’s much work to be done. 

How do you see your role (and palliative care researchers in general) linked to that of clinicians?  

BA: I think we complement each other; I think research has to be informed by clinical need, especially when fuelled by researchers’ curiosityI did clinical work alongside research for a few years and even though I am not doing clinical work now, I hope to go back to it at some point. I think it is crucial not to miss that link with day-to-day practice. I feel that clinicians who have allocated contractual time to do research alongside their clinical hours are best positioned to be a link with research groups and indeed to lead research projects.

What does winning the EAPC Early Researcher Award mean to you?   

BA: It means recognition and validation of all your hard work, that what you are doing is useful and that you are on the right path. Most importantly, it is a wonderful moment to thank everyone I’ve been involved with. First and foremost, my family and friends and all those whom I’ve worked with, all the wonderful healthcare professionals who gave their time to participate in our studies, all the patients and families, and our funders that supported us in different ways. It would be impossible not to mention them, as I’m being awarded for something I did not accomplish alone.

What helped you most during the worst moments of the pandemic?  

BA: The main thing was to be able to come back to Portugal two days before the borders closed in March 2020! The idea of not being able to fly any time I wanted or needed to, made me feel very anxious, so I was extremely fortunate to join my family and continue to work full time from my Portuguese home. I can’t thank Professor Barclay enough for making it so easy for me and for his trust. I am very grateful. I think during quarantine what helped was reading, listening to music, painting, ‘netflixing’ and petting our cats. All those were very therapeutical. Video conferencing with friends and family, on occasions where we would normally meet in person, was hugely important, especially birthdays and Christmas. More recently, I’ve been riding my bike a lot more and enjoying being outdoors, although we haven’t had much of a summer where I live at the moment. Crossing my fingers for some hot days to go to the beach!

Registered delegates can view the presentation online until 31 January 2022 

Bárbara’s presentation, ‘Improving patient and family care using patient centred outcome measures – from development to implementation into practice’, is available for registered delegates to view online on the congress platform until 31 January 2022, along with all the congress content. Login with your email and password here.

Everyone can view the Abstracts from the EAPC 17th World Congress 6 to 8 October 2021, published in Palliative Medicine, vol:35, issue 1, suppl. page(s): 1-243, here.


  • Find more information on Bárbara Antunes here. View a list of her publications here
  • Follow Barbara on Twitter @B_CP_Antunes
  • Bárbara is a member of the Palliative Care Research Society (PCRS) Committee.
    To find out more click here.
  • View more posts relating to the 17th EAPC World Congress Online here, including interviews with Professor Harvey Max Chochinov, winner of the 2021 EAPC Clinical Impact Award, and Dr Erica Borgstrom (available soon).


Melhorar os cuidados dos doentes e da família utilizando medidas de resultados centradas no doente – do desenvolvimento à implementação na prática: Uma entrevista com a Dra. Bárbara Antunes, vencedora do prémio 2021 EAPC Early Researcher Award

Em direto do 17º Congresso Online da Associação Europeia de Cuidados Paliativos (EAPC) 

Em todos os Congressos da EAPC, os maiores destaques são os EAPC Researcher Awards. Atribuídos conjuntamente pela EAPC e pela EAPC Research Network (RN), estes prémios reconhecem e apoiam o trabalho de cientistas e clínicos/as na área dos cuidados paliativos que dão um excelente contributo para a investigação e prática clínica. 

Falámos com Bárbara Antunes, Mestre, Doutorada, Especialista em Psicologia Clínica e da Saúde no Departamento de Saúde Pública & Cuidados Primários da Universidade de Cambridge, Reino Unido, sobre o trabalho que a levou a vencer o Prémio 2021 EAPC Early Researcher Award.  

O que, ou quem, foi a sua inspiração para uma carreira nos cuidados paliativos?   

Dr Bárbara Antunes

Bárbara Antunes: Eu não escolhi seguir uma carreira nos cuidados paliativos; digo sempre que foi esta área de investigação que me escolheu! Em 2008, trabalhei em part-time como assistente de investigação na recolha de dados de uma colega que estava a fazer o doutoramento. Um dia, ela pediu-me para acompanhá-la a uma reunião com o seu coorientador. Relutantemente, eu disse que sim, já que não achava que não tinha muito a fazer lá. No final da reunião, esse Professor perguntou se uma de nós estaria interessada em ser assistente de investigação num novo projeto financiado pela União Europeia. Tendo em conta que a minha colega não o poderia fazer, dado que estava a meio do doutoramento, eu, que não fazia ideia onde ou no que me estava a meter, respondi com um entusiástico “eu estou!” e foi assim que participei no projeto Reflecting the PositiveIties of European Priorities for Research and Measurement in End-of-life Care (PRISMA) através da Universidade de Coimbra e liderado pelo Instituto Cicely Saunders. Esta foi a minha primeira experiência em investigação de cuidados paliativos. Conheci pessoas incríveis, de diferentes países, diferentes origens, com diferentes experiências, todos a trabalhar juntos para o mesmo propósito. Isso inspirou-me a continuar neste caminho.   

Pode falar-nos brevemente sobre a investigação que levou à atribuição deste prémio e em algumas das principais descobertas?  

BA: A maior parte do meu trabalho de investigação em cuidados paliativos tem sido em medição de resultados e como usar medidas de resultados centradas no paciente na prática clínica e na investigação. Estive envolvida no desenvolvimento de medidas, traduzindo-as e adaptando-as à população de interesse e testando as suas propriedades psicométricas e de rastreio. Há muitas perguntas que se podem responder com dados recolhidos na prática diária, não só para usá-los imediatamente e beneficiar o paciente individual, mas também para fazer investigação e realizar auditorias. Um exemplo seria utilizar um ou dois itens de uma dessas medidas, neste caso, a Escala de Resultados de Cuidados Paliativos, para rastrear a depressão (uma necessidade paliativa altamente prevalente) em tempo real ou, por outras palavras, durante a consulta, em vez de ter de utilizar um questionário completo apenas para essa problemática. Repetimos esse estudo em diferentes populações europeias e tivemos o mesmo resultado. Isso dá-nos confiança para utilizar esta medida e os itens em particular, para rastrear a depressão. Além disso, a minha revisão sistemática “Implementação de medidas de resultados reportadas pelo paciente na prática clínica de cuidados paliativos: Uma revisão sistemática de facilitadores e barreiras” forneceu algumas informações sobre as principais questões de implementação destas medidas na prática clínica de cuidados paliativos e recomendações sobre como se pode abordá-la. Embora nem todas as recomendações sejam adequadas para todos os serviços e valências de prestação destes cuidados, esta revisão fornece uma série de considerações a ter em conta no planeamento. Há alguns estudos publicados agora que usaram essas recomendações e parecem ter sido úteis. 

No ano passado, durante a pandemia, publicou o primeiro inquérito eletrónico a nível nacional (Reino Unido) sobre alterações da prática de prescrição de medicação antecipatória. Pode falar-nos da investigação, por favor? 

BA: Antes de me juntar ao grupo em janeiro de  2020,  o Cambridge Palliative & End of Life Research Group  já estava a trabalhar em investigação na prescrição de medicação antecipatória (medicamentos injetáveis prescritos antes da necessidade clínica,  “no caso de”,  que ficam em casa do doente e que são para administração por enfermeiros e médicos se os sintomas surgirem nos últimos dias de vida), principalmente através do trabalho do estudante de doutoramento Ben Bowers, da Dra. Richella Ryan e do Professor Stephen Barclay. Esse trabalho tinha demonstrado a falta de evidência científica quanto às melhores práticas de prescrição antecipatória. Quando a primeira onda COVID atingiu o Reino Unido, achámos fundamental compreender que mudanças estavam a ocorrer em diferentes serviços em todo o Reino Unido e na Irlanda. Ficámos a saber que estavam efetivamente a acontecer mudanças, dependendo dos recursos disponíveis, dos protocolos existentes com as farmácias, se existiam guidelines ou se se estavam a implementar essas mesmas guidelines entre outros fatores. As principais alterações reportadas por 261 participantes que trabalhavam em comunidade, hospice e hospital, foram na via da administração de medicamentos (47%), medicamentos prescritos (38%),  quantidades totais prescritas (35%)  consideração de administração de fármacos por cuidadores informais (37%) e o contacto clínico ser feito remotamente (63%) . Os principais tópicos do tema da questão aberta foram a necessidade de recomendações para alterações regulamentares que permitam a reutilização de medicamentos, um acesso mais amplo e mais fácil na comunidade desses mesmos medicamentos e a necessidade de reciclar os medicamentos não usados devolvidos  às farmácias. Este estudo revelou a ocorrência de mudanças rápidas na prática de prescrição antecipatória em muitas áreas do Reino Unido e Irlanda e que os serviços estavam preparados e tinham planos de contingência para diferentes cenários. Por exemplo, a utilização de vias oral e sublingual em vez de usar injetáveis e de ter cuidadores informais envolvidos na administração de medicamentos antecipatórios, uma prática comum em alguns países como a Austrália. No futuro, seria importante ver que mudanças persistem quando a pandemia terminar. Continua a haver uma lacuna na evidência quanto à melhor prática de prescrição antecipada e há muito trabalho a fazer.

Como vê o seu papel (e os investigadores de cuidados paliativos em geral) ligado ao dos clínicos?  

BA: Penso que nos complementamos, penso que a investigação tem de ser moldada pela necessidade clínica, especialmente quando alimentada pela curiosidade dos investigadores. Eu fiz trabalho clínico e de investigação durante alguns anos e, apesar de não estar a fazer trabalho clínico agora, espero voltar a fazê-lo no futuro. Penso que é crucial não perder essa ligação com a prática clínica do dia-a-dia.   Penso  que  os clínicos que têm tempo contratual destinado a investigação, a par dos seus horários clínicos, estão melhor posicionados para serem uma ligação com grupos de investigação e, claro, liderar projetos de investigação.

O que significa para si ganhar o Prémio EAPC Early Researcher Award?   

BA: É o reconhecimento do trabalho que tenho feito ao longo dos anos. Acho que é uma validação de todo o trabalho árduo, da sua utilidade clínica e de que estou no caminho certo. O mais importante é agradecer a todos que estiveram e continuam a estar envolvidos, em primeiro lugar e sempre, à minha família e amigos e a todos aqueles com quem trabalhei, todos os maravilhosos profissionais de saúde que dão o seu tempo para participar nos nossos estudos, todos os pacientes e famílias e os nossos financiadores que nos apoiam de diferentes maneiras. Seria impossível não o fazer, já que estou a ser premiada por algo que não fiz sozinha.

O que mais a ajudou nos piores momentos da pandemia?  

BA: O principal foi poder voltar a Portugal dois dias antes de as fronteiras fecharem em março de 2020! A ideia de não poder voar para Portugal sempre que quisesse ou precisasse fez-me sentir muito ansiosa. Por isso, tive muita sorte em juntar-me à minha família e continuar a trabalhar a tempo inteiro a partir da minha casa portuguesa. Não posso agradecer ao Professor Barclay o suficiente por tornar as coisas tão fáceis e pela sua confiança em mim. Estou muito agradecida. Acho que durante a quarentena algumas coisas que ajudaram foram ler, ouvir música, pintar, netflixing e estar na companhia dos nossos gatos. Tudo isso foi muito terapêutico. Fazer videoconferências com amigos e familiares em ocasiões em que normalmente estaríamos juntos foi extremamente importante, especialmente aniversários e no Natal. Mais recentemente, tenho andado de bicicleta e gosto de estar ao ar livre, embora não tenhamos tido tempo de verão onde vivo neste momento. Estou a fazer figas por uns dias quentes para poder ir à praia!

Veja a apresentação até 31 de janeiro de 2022 

A apresentação da Bárbara, Melhorar os cuidados dos pacientes e da família utilizando medidas de resultados centradas no paciente – do desenvolvimento à implementação na prática’, está disponível para os conferencistas registados visualizarem online na plataforma do congresso até 31 de janeiro de 2022. Para aceder à plataforma do congresso, clique aqui:  e faça o login.

Todos podem ver os Resumos do  17º Congresso Mundial EAPC Congresso de 6 a 8 de outubro 2021, Medicina Paliativa,volume: 35, edição 1, 1-243. 


  • Saiba mais sobre Bárbara Antunes.
  • Uma lista completa das publicações de Bárbara está disponível aqui
  • Siga a Bárbara no Twitter @B_CP_Antunes  
  • Bárbara é membro do Comité da Sociedade de Investigação em Cuidados Paliativos (PCRS). Para saber mais clique aqui.
  • Ver mais posts relativos ao 17th EAPC World Congress Online aqui, incluindo entrevistas com Dr Erica Borgstrom,vencedora do 2021 EAPC Post-doctoral Award, e Professor Harvey Max Chochinov,vencedor do 2021 EAPC Clinical Impact Award.
Posted in 17th EAPC World Congress, EAPC ACTIVITIES, EAPC Researcher Awards, EAPC World Congresses | Tagged | Leave a comment

Dignity in Care: An Overview of My Research Career: An interview with Professor Harvey Max Chochinov, winner of the 2021 EAPC Clinical Impact Award


Highlights of every European Association for Palliative Care (EAPC) Congress are the EAPC Researcher Awards. Awarded jointly by the EAPC and the EAPC Research Network (RN), these awards recognise and support the work of scientists and clinicians in the field of palliative care who make an outstanding contribution to research and clinical practice.

We talk to Harvey Max Chochinov, Distinguished Professor of Psychiatry at the University of Manitoba,Canada, about his pioneering research work with Dignity Model and Dignity Therapy that has led to his winning the 2021 EAPC Clinical Impact Award 2021.

Professor Harvey Chochinov

What, or who, was your inspiration for a career in palliative care?

Harvey Max Chochinov: I started out interested in the interface between psychiatry and cancer. This led to doing a fellowship at Memorial Sloan Kettering where I trained with Jimmie Holland, William Breitbart, Kathy Foley, and Nessa Coyle. When I returned to Canada in the late 1980s, I had some wonderful mentorship from a research psychologist named Keith Wilson. He guided me through my first successful grants, which launched my career in palliative care. In those early years, like many people, I was inspired by Dame Cicely Saunders; and the prolific output of researchers like Eduardo Bruera and Irene Higginson. 

Can you tell us briefly about the research that has led to your winning this award and some of the main findings?

HMC: Early on in my research career, I was exploring things that were more traditionally within the realm of psychiatry, but in the context of terminal illness. We published studies on the prevalence of depression in the terminally ill, screening approaches for depression for patients nearing death and hopelessness as a predictor of suicidal ideation. We also conducted some of the earlier studies on desire for death in the terminally ill and will to live, examining their correlates and temporal stability.  

This then segued to a program of research focused on the notion of dignity at end of life. This led to an empirical model of dignity in the terminally ill, which was the basis for developing a screening tool for dignity related distress, coined the Patient Dignity Inventory, which has been translated in about a dozen languages. As part of my interest in how to affirm personhood for dying patients, and based on the empirical model, we developed a brief, individualized psychotherapy we called Dignity Therapy. This legacy-based intervention has been studied extensively worldwide and has been shown to enhance various dimensions of end-of-life experience.

We’ve heard that Canadian Virtual Hospice, which you founded, notched up an impressive 2.3 million views last year from professionals and the public. Please tell us more, and how can researchers use this to their benefit?

HMC: The user base is closer to 2.6 million “virtually” from every country on the globe. We have become the most comprehensive online platform on palliative and end-of-life care and grief in the world. In recent years we have championed the needs of underserved populations, and by deploying our user experienced based design approach and robust evaluation, we have honed engagement that melds lived experience with latest knowledge for tailored, impactful supports/tools/resources. We routinely work with research teams to translate and disseminate knowledge to improve care and advance progress in palliative care.

How do you see your role (and palliative care researchers in general) linked to that of clinicians? 

HMC: I think researchers and clinicians need to work hand in glove. I have never done a research project that hasn’t included strong clinical collaborators. Clinicians bring an invaluable and practical perspective and can affirm if our ideas are well grounded in real world experience. We also need them to be our allies if the research is to be accepted and accommodated by clinical staff who are often preoccupied with so many other activities and responsibilities. Palliative care clinicians rightfully challenge us with the ‘so what’ question, meaning they need to see how the research can make a difference at the bedside. Without their alliance and buy-in, research in this vulnerable population is simply not possible.   

What does winning the EAPC Clinical Impact Award mean to you? 

HMC: It is an honour to be recognised by the EAPC. One doesn’t do this work for the recognition, but I like to think, giving that this is a Clinical Impact Award, that the research is being recognised for the influence it has had and is having on patient care and their families. That is really the ultimate award; knowing that these insights and clinical innovations are making a difference in the lives of people dealing with life-threatening and life-limiting illnesses. 

Let’s talk about life outside of palliative care: What’s your favourite novel?

HMC: At one time I was an avid reader of fiction and enjoyed works by authors such as Margaret Atwood, Robertson Davies, Gabrielle Roy, Howard Fast, Gabriel García Márquez and the classics such as Tolstoy and Dostoevsky. The past decade I have become more of a fan of well-written history and biography and have read most of the books written by David McCullough, Walter Isaacson, Doris Kearns-Goodwin and Robert Caro. 

If you are registered for the EAPC World Congress, please Join Prof Harvey Chochinov, Dr Erica Borgstrom and Dr Bárbara Antunes at 6pm CET on Thursday, 7 October at the EAPC Research Award session.

Links and resources

Important information for registered congress delegates – view all on-demand content on the congress platform until 31 January 2022

Professor Chochinov’s presentation, Dignity in Care: An Overview of My Research Career’  is available until 31 January 2022. Click on the above link or access the platform and login here.


Posted in 17th EAPC World Congress, EAPC Researcher Awards, EAPC World Congresses, RESEARCH | Tagged , | 1 Comment

Palliative Medicine: Paper of the Year Award announced at #EAPC2021


‘Palliative Medicine’ are delighted to be presenting the award for ‘Paper of the Year 2020’ as part of the European Association for Palliative Care 17th World Congress Online. Catherine Walshe, Editor-in-Chief of the journal, tells you more about this year’s winning paper and invites delegates attending the congress to join her tomorrow, Thursday, 7 October at 3pm CET at the award presentation.

Professor Catherine Walshe

Every year, as Editor-in-Chief of the journal, I judge the Paper of the Year together with members of the editorial and editorial advisory board. This year, the judging team included Lorna Fraser, Breffni Hannon and Melissa Bloomer, and thank you to them for their hard work reading and appraising all the papers in the 2020 print issues of the journal.

Choosing a winner was very difficult, with some very high-quality papers vying for the award. However, in the end the judges unanimously agreed to give the award to Emma Chapman and the author team (Zoe Edwards, Jason W Boland, Matthew Maddocks, Lucy Fettes, Catherine Malia, Matthew R Mulvey, and Michael I Bennett) associated with the paper Practice review: Evidence-based and effective management of pain in patients with advanced cancer. Palliative Medicine 2020, Vol. 34(4) 444–453.

Dr Emma Chapman (right) with Professor Mike I Bennett, Director of St Gemma’s Academic Unit of Palliative Care, one of the co-authors of the winning paper

Practice reviews are a new review feature for the journal, focused on clinical issues, with an appraisal and summary of evidence that helps clinicians to understand the evidence about what to ‘do’, what to ‘not do’ and where we have insufficient evidence so we ‘don’t know’. These are underpinned by a rigorous systematic approach so that readers can be assured of the quality of the evidence underpinning the recommendations. This paper has been downloaded nearly 10,000 times since it was published.




If you’re attending the congress, please do join us online tomorrow, Thursday 7 October at 3pm CET when I present the award and congratulate Emma and the team.


Follow Palliative Medicine on Twitter @palliativemedj

Editorial note :
Palliative Medicine is the official research journal of the EAPC. Each month, the Editor-in-Chief chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Read the archive of Editor’s Choice posts here.

EAPC members can download the full-text article to which the blog post relates from the EAPC website FREE of charge. Login and download here. Join, or renew your membership here.


 Members of our national associations can join the EAPC for free here.


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17th EAPC World Congress Online: See what the official #EAPC2021 Social Committee has in store…  

Members of the 17th EAPC World Congress Scientific Committee, Ana Lacerda (paediatrician), Elodie Cretin (researcher), Judith Rietjens (health scientist) and Claudia Sütfeld (EAPC Congress Coordinator and journalist) have formed an important sub-committee – the Official #EAPC2021 Social Committee. Here they explain what you can expect from this year’s World Congress that promises high-quality content with a twist of humour and fun…  

‘The Official #EAPC Social Committee’. Left to right clockwise: Judith Rietjens, Ana Lacerda, Claudia Sütfeld, Elodie Cretin

Have you registered for the EAPC 2021 World Congress yet? If not, what are you waiting for? Come explore new dimensions with us! And don’t forget that members of the EAPC receive a 25 per cent discount on registration fees…

This year’s World Congress will be a unique opportunity to engage with colleagues and friends whilst learning about the latest developments in the field of adult and paediatric palliative care. The virtual format has many advantages, as it means lower costs (fees, travel, accommodation, meals) – and offers the opportunity to view and review presentations at your leisure. All delegates have the chance to view content before the start of the congress plus there will be lots of on-demand content to review until 31 January 2022. Several hundred posters are available to view on the congress platform and we hope that you will vote for your favourites – voting is open until 31 December.

We are all well aware that ‘virtual’ events result in missed chances to interact in-person, to make new acquaintances, to socialise. This year’s Scientific Committee came up with a lot of ideas to promote interaction – it even constituted a Social Committee (us, in case you have not noticed)!

But we can’t do this alone – we need YOU!

Exploring New Dimensions at #EAPC2021 

Some of our plans are tried and tested, like the SCIENCE SLAM (make sure to brush up on all that knowledge; check the website or read an earlier post from Elodie here.  (If you’re already registered for the congress, you can even see some of the entries on the congress platform – just log into with your email and password).

Or the International Photography competition… There’s already a wonderful selection of photos from around the globe for everyone to view on the EAPC website and on the congress platform. Registered delegates will be able to vote for their favourites until 8 October.

You’ll also have a chance to win some great prizes. You can even indulge in a spot of gamification by tracking your activity on the congress platform – more prizes offered to the delegates who’ve been the most active on the platform.

And now for something entirely different… We also have many new ideas too (remember it’s a World Congress, right?).

You told us last year that you wanted a way to contact each other… this year we will have a message board. Want to share recipes? Your favourite cocktail recipe? Books? Music? Professional tips? … Start preparing, as we will have boards to pin these on. Registered delegates will find information about the message board in the A-Z Congress Guide that is now available on the congress platform.

This year, for the first time, we are introducing the Congregate App. This will be used throughout the congress to enable people to connect and chat at virtual ‘tables’ of up to 12 people. You can choose to ‘open’ a table or to ‘sit’ at an existing one. When opening a table, you may decide on a theme – an area of interest (within palliative care, or not!), a country, or whatever you fancy. (Check the A-Z Congress Guide for information on how to use the App and there’s even a ‘Congregate’ video explainer on the congress platform).

So, you see, this is really going to be an exciting and novel meeting. Learning will extend beyond the usual borders – not only in dynamic content but in the many flexible and creative ways we can engage with each other. With a blend of on-demand content, live interactive sessions from 6 to 8 October 2021 and the opportunity to continue viewing content for three months, you can dive into this year’s congress at a time to suit you.

Mix and match scientific rigour with our official online Yoga sessions, meet up with old friends and colleagues, share the excitement and tweet #EAPC2021.…. We look forward to seeing you soon.

EXPLORE NEW DIMENSIONS at #EAPC2021. The EAPC 17th World Congress Online offers interactive online sessions from 6 to 8 October 2021, an entire day dedicated to Paediatric Palliative Care and a selection of pre-congress sessions on 5 October.  If you’re already registered for the congress, you can access the congress platform now – lots of on-demand content available until 31 January 2022. Log in at with your email address and password.

  • Register for the congress here. (Up to 25% discount for EAPC members)
  • View the scientific programme here.
  • View the abstract book here.
  • Enter the Science Slam here.
  • Enjoy lots of on-demand content until 31 January 2022.
  • Get a sneak peek of presentations in the EAPC World Congress series on the blog.
  • Follow latest congress news @EAPCvzw #EAPC2021 and via the EAPC blog.





Posted in 17th EAPC World Congress, EAPC World Congresses | Tagged | Leave a comment