How to assess and address the wish to hasten death in daily clinical practice – the 4th International WeCare workshop


HAGA CLIC AQUÍ PARA OBTENER LA VERSIÓN EN ESPAÑOL

Cristina Monforte-Royo and Josep Porta-Sales, WeCare: End of Life Care research group, Barcelona, Spain, describe how their international workshop links research to clinical practice

The WeCare team with visiting experts

WeCare: End of Life Care is a research group based at the Universitat Internacional de Catalunya. Since 2013, WeCare has organised an International Workshop on an annual basis to give Spanish healthcare professionals an insight into cutting-edge research about the Wish to Hasten Death (WTHD). The latest edition of our workshop took place on 25th November 2016 under the title ‘How to assess and address the Wish to Hasten Death in daily clinical practice’.

WeCare’s conviction that its research in the field of palliative care must be accessible to the professionals who treat patients on a daily basis led to an innovative format for the 2016 workshop. (click here for video summary in Spanish)

Dr Josep Porta-Sales, WeCare director, explains:

“For the 4th edition of our workshop, we were keen to make sure that those who attended would gain practical knowledge based on recent research. We designed the workshop to ensure the evidence-based discussions with international experts were complemented by approaches which empower professionals in their daily clinical practice.”

The workshop revolved around three clinical cases that were re-enacted live by healthcare professionals and actors. The challenges posed by these cases, based on real-life instances of the WTHD, were then discussed with great involvement from the healthcare professionals who attended the event and a focus on previous experiences and recurring issues.

Real-life clinical cases acted out for discussion with experts

Dr Cristina Monforte-Royo, co-director of WeCare, described the inspiration for the event:

“In the last few years we have had a number of significant breakthroughs in our research, shedding light on various aspects of the Wish to Hasten Death, a phenomenon which affects many patients at the end of life and until now had not been studied in depth in the Spanish context. Now, we are aware that in order to fulfil WeCare’s aims of addressing key issues in palliative care, we must give healthcare professionals access to this knowledge to facilitate their clinical work. This year’s workshop had a new, dynamic approach to do just that.”

The workshop also included interventions from Prof. Johan Menten from UZ Leuven in Belgium and Prof. Evert van Leeuwen from Radboud University Medical Centre in the Netherlands. Given the legal contexts of the two countries, these international speakers were able to provide the participants with new perspectives and examine the influence of cultural aspects on the WTHD.

Given the success of the event, which attracted over 150 participants from across Spain, the WeCare team are looking forward to broadening their range of training activities to provide palliative care professionals with the tools they need to address challenges in their daily practice.

Please get in touch via email wecare@uic.es or visit our website for more information.

To sign up for the 5th Workshop organised by the WeCare Chair, click here

Read more about the WeCare Chair: End of Life Care research group’s work on the Wish to Hasten Death in a recent post on the EAPC Blog by Mariona Guerrero, Josep Porta-Sales and Rebecca Latter about The process of developing an operational definition of the wish to hasten death’ by Cristina Monforte-Royo, Josep Porta-Sales and Albert Balaguer on behalf of WTHD ad Hoc Research Group.

 

Cómo evaluar y abordar el deseo de adelantar la muerte en la práctica clínica diaria – 4º Workshop de la Cátedra WeCare

Cristina Monforte-Royo and Josep Porta-Sales, Cátedra WeCare: Atención al Final de la Vida, Barcelona, España, describen cómo su workshop internacional relaciona la investigación científica con la práctica clínica

El equipo WeCare y expertos visitantes

La Cátedra WeCare: Atención al Final de la Vida es un grupo de investigación a la Universitat Internacional de Catalunya. Desde 2013, WeCare ha organizado un Workshop Internacional cada año para mostrar a los profesionales de la salud en España los resultados más novedosos de la investigación sobre el deseo de adelantar la muerte. La última edición del workshop tuvo lugar el 25 de noviembre 2016 bajo el título ‘Cómo evaluar y abordar el deseo de adelantar la muerte en la práctica clínica diaria’.

El formato innovador del workshop en 2016 parte de la convicción de la Cátedra WeCare de que la investigación en el ámbito de cuidados paliativos debe ser accesible para los profesionales que tratan con pacientes cada día. (Haga clic aquí para obtener un video clip en español).

El Dr Josep Porta-Sales, director de la Cátedra WeCare, añade: 

“Para la 4ª edición de nuestro workshop, queríamos asegurarnos de que los que asistieran ganaran conocimientos prácticos basados en estudios y proyectos de investigaciones recientes. Diseñamos el workshop para garantizar que las discusiones con expertos internacionales se complementaran con abordajes que dotaran a los profesionales de competencias para su práctica clínica.”

El workshop se basó en tres casos clínicos que fueron representados en directo por profesionales de la salud y actores. Los retos que estos casos “reales” de deseo de adelantar la muerte presentaban se discutieron con mucha participación de los profesionales que asistieron y se enfatizó especialmente las experiencias previas y los problemas recurrentes.

Casos clínicos reales representados en directo

La Dra Cristina Monforte-Royo, co-directora de la Cátedra WeCare, describe la inspiración para el evento:

“En los últimos años ha habido hallazgos importantes en nuestra investigación, sobre varios aspectos del deseo de adelantar la muerte, un fenómeno que afecta a muchos pacientes al final de la vida y que hasta ahora no se había estudiado en detalle en el contexto español. Ahora, somos conscientes de que para cumplir con el objetivo de la Cátedra WeCare, de abordar temas claves en cuidados paliativos, hemos de poder dar a los profesionales de la salud acceso a conocimientos que faciliten su trabajo clínico. El workshop de este año tiene un formato nuevo y dinámico para conseguir esto.”

El workshop incluyó intervenciones del Prof. Johan Menten de UZ Leuven en Bélgica y del Prof. Evert van Leeuwen de Radboud University Medical Centre en los Países Bajos. Dados los contextos legales de estos dos países, estos expertos pudieron ofrecer nuevas perspectivas y valorar la influencia de los aspectos culturales sobre el deseo de adelantar la muerte.

Después del éxito de esta jornada, a la que asistieron más de 150 personas de todo el país, el equipo WeCare está trabajando para ampliar su oferta formativa para profesionales de los cuidados paliativos y abordar retos recurrentes en la práctica clínica diaria.

Si desea más información sobre la Cátedra WeCare, póngase en contacto con nosotros por email wecare@uic.es o visite nuestra web www.wecare.uic.es

Para inscribirse en el 5º workshop organizado por la Cátedra WeCare, haga clic aquí.

Lee más sobre la Cátedra WeCare: Atención al final de la vida y su investigación sobre el deseo de adelantar la muerte en un post reciente de Mariona Guerrero, Josep Porta-Sales and Rebecca Latter : ‘The process of developing an operational definition of the wish to hasten death’ by Cristina Monforte-Royo, Josep Porta-Sales and Albert Balaguer on behalf of WTHD ad Hoc Research Group.

 

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Palliative care: Making it work – New MOOC launches

Dr Nancy Preston and Dr Sean Hughes, International Observatory on End of Life Care, Lancaster University, UK, explain how a Massive Open Online Course (MOOC) has provided free online training for health and social care workers, patients, carers and academics from across the world. And now a second course is soon to launch . . .

Dr Nancy Preston

To improve the understandings and provision of palliative care, we need to engage and train our successors in the workforce and raise the profile of the field. Whilst some countries provide palliative care education to specialist staff, most day-to-day care is carried out by generalists. Palliative care is only part of their role and they are not likely to have received any training in the specialism – if any. Most health and social care workers will have some contact with dying people and their families. We know that many do not feel sufficiently skilled in this work and in knowing when palliative care is an appropriate option. This is complicated further by limited integration of palliative care in general health care provision.

Dr Sean Hughes

Regular readers of this blog will be aware that an EU funded study, InSup-C, was conducted to evaluate the provision of integrated palliative care in five European nations, concluding in late 2016. Our findings were published in academic papers and presented at conferences. But these only reach a small proportion of the research community and an even smaller proportion of the general health and social care workforce and general public. To bridge this gap, we developed a Massive Open Online Course (MOOC) called: ‘Palliative care: Making it work’. We ran this free course – requiring only an Internet connection – in October 2016. The MOOC comprised three consecutive weeks of learning activities, each dedicated to a different aspect of our study findings. It provided a rich mix of videos, short lectures, discussion activities and written work.

More than 6,500 people enrolled from 72 countries and from every continent. They included health and social care workers of all types, as well as patients, carers and academics. Three thousand of these were ‘active learners’ who regularly engaged in the educational activities with some receiving completion certificates to evidence continued professional development. The feedback from participants was extremely good and the MOOC was supported by key organisations such as Hospice UK.

An e-book summarising study results was available to download – increasing traffic to the research website by more than 1,000 per cent. InSup-C open access research articles in academic journals also experienced increased interest with one achieving a ‘top ten most cited paper’ for that palliative care journal in 2016.

Sign up to the new MOOC – starting 5 June

Various people have asked us about running the MOOC again. A new course is starting on 5 June 2017 and you are welcome to join or to recommend it to others. We are also giving participants the opportunity to give feed-back on some of the recommendations from our study. Check the website here.

Links
Download a free copy of Integrated Palliative Care, edited by InSup-C project members, Jeroen Hasselaar and Sheila Payne, and published in September 2016. Available in both English and Spanish.

Read more posts about integrated palliative care and InSup-C on the EAPC Blog.

 

Posted in EAPC COLLABORATIVE PROJECTS, EDUCATION & TRAINING, InSup-C (integrated palliative care) | Tagged | 1 Comment

Humanitarian disaster spilling over into Europe – from Syria to Germany

Continuing our new series about palliative care in the context of humanitarian crisis. In the coming weeks we look at the implications of providing palliative care and bereavement care for migrants, refugees and people who have fled war-torn countries and places of conflict and how the hospice and palliative care community can offer appropriate support.

Today, we hear from Lukas Radbruch, Derya Bozdag and Michaela Hesse, in the Department of Palliative Medicine at University Hospital Bonn, Germany.

Lukas Radbruch

Living in peaceful and prosperous Germany, how do the civil war and the ensuing humanitarian crisis in Syria affect a palliative care team?

With nearly one million refugees streaming across Europe and into Germany in 2015, you could hardly escape the news. The culture of welcoming, open arms, but also increasing resentment later, permeated the media. And there were more subtle issues. For example, when one of the hospitals where I (Lukas) work did the x-ray checks for newly arrived refugees, we suddenly had to deal with infectious diseases such as tuberculosis in young people. Before this, we had been familiar with these conditions only in the very sick or frail elderly.

Michaela Hesse

Or when a container camp for refugees was built very close to our home and I noticed that, as liberal as we all seemed on the outside in our neighbourhood, there were some deep down prejudices.

The enormous suffering and the stories of hope and despair that are behind each refugee became clear when a young man aged 31 was admitted to our palliative care unit. He was from Syria, and had recently been diagnosed with gastric cancer. The whole family had shared their resources to send him to Germany quickly so that he would have a chance for cure in our first-class healthcare system. Sadly, it was confirmed that the cancer had spread too far for curative treatment and he was transferred to our palliative care ward.

Although our patient still hoped for a miracle, he realised he did not have long to live; his greatest wish was to be reunited with his wife (aged 27) and his two children (three and six years old) before death. The family was still in Syria, waiting at the Turkish border for a chance to reach Germany. The story of the young family moved our hearts and we tried to support them. They needed a visa, but the German consulate told us this was impossible. We were told that there were other ways to say goodbye, for example with Skype, which we found unacceptable. Days of incessant communication followed, both with the German authorities in Turkey and in Germany. I even wrote to the German president, whom I had met in a panel discussion a month before, and asked him to intervene. His office refused, saying they could not get involved – but four hours later the foreign office informed us that the family would get their visas after all . . .

Even after the family had crossed the Turkish border, there was still great suspense: the patient had deteriorated and we were afraid he would die before they arrived; the police detained the family at the airport, and only after more interventions did they arrive in Germany.

Finally, the reunion in the early morning with the two children running up to their dad who had managed to get out of bed. Talk about holistic care: with his family around him he got better, and we discharged him after about two weeks. He lived with his family in a flat until he died four weeks later from his disease. His wife and children are now staying with other family members and have asked for asylum in Germany.

What we learned

We learned a lot caring for this young man and his family. We learned about public opinion and resentment. We had informed the local media when the family was reunited. However, after the first newspaper report, the university hospital administration clamped down on the story because of serious, negative feedback from readers that the hospital was bringing even more refugees to Germany – regardless of reason.

We learned about cultural and linguistic diversity. We communicated with a little English, but mostly by translating from German to Turkish (by one of our nurses), and then to Kurdish (by the patient’s mother) and back again. Sometimes we used the iPhone translation app.

Most of all, we learned that it pays to be persistent. I had thought that it would not be possible to reunite the family, but the dedication and persistence of some of our team members, especially the social worker and one of the nurses, paid off. It was good for the team to do this, and most of all it was good for the patient and his family.

I will not forget the children’s eyes as they hugged their father early in the morning on the day when they were finally reunited.

Links and further reading

Follow the EAPC Blog for more stories in this series

Posted in ADVOCACY & POLICY, Palliative care in humanitarian crises | Tagged | Leave a comment

Aid when there is ‘nothing left to offer’

Continuing our new series about palliative care in the context of humanitarian crisis. We look at the implications of providing palliative care and bereavement care for migrants, refugees and people who have fled war-torn countries and places of conflict and how the hospice and palliative care community can offer appropriate support.

Today, we hear from Dr Lisa Schwartz, Dr Matthew Hunt, Dr Elysée Nouvet and Ani Chénier, members of the Humanitarian Healthcare Ethics Research Group, Canada. 

Some members of the Humanitarian Health Ethics Research Group palliative care project: Back row (standing), left to right: Matthew Hunt, Lisa Schwartz, Laurie Elit, Elysée Nouvet, Sonya de Laat. Front row (seated), left to right: Kevin Bezanson, Leigh-Anne Gillespie, Carrie Bernard, John Pringle

Is palliative care possible in a humanitarian emergency? This question is one that the Humanitarian Healthcare Ethics Research Group (HHERG) – a group of researchers and humanitarian practitioners – has been pondering for several years. The possibility of providing palliative care – and associated social, ethical and logistical challenges – was especially brought to the fore by the 2013-16 Ebola epidemic. Even though palliative and supportive care comprised the main treatments available in the face of a disease with high mortality rates, and for which there were no effective life-saving interventions, they were not incorporated into formal care plans.

In the fall of 2016, we launched an ELRHA/R2HC (Enhancing Learning and Research for Humanitarian Assistance/Research for Health in Humanitarian Crises)-funded project to better understand how humanitarian organisations can support the delivery of ethically and contextually appropriate palliative care in humanitarian crises.

Our aims are to document the current situation, and to analyse stakeholders’ perceptions of what is and should be happening, and the ethical principles that inform those perceptions. We are completing a literature review and interviews with stakeholders (people working with international organisations and those involved at local levels, either as healthcare practitioners or members of affected communities). In February 2017, we also launched the first survey (in French, Arabic, and English, accessible here), aimed at clarifying the challenges and needs related to palliative care provision in humanitarian settings.

While our project is still in its early phase, one note already rings clear: how keenly the people with whom we have spoken see and feel a need for these questions to be explored, and for this kind of research to be conducted. The enthusiasm with which collaborators and respondents have come forth is striking.

The project summary

Representatives from the WHO (World Health Organization), MSF (Médecins Sans Frontières), the ICRC (The International Committee of the Red Cross), the IFRC (International Federation of Red Cross and Red Crescent Societies), and Sphere worked with us to develop our research questions and objectives.

Representatives from the Palliative Care in Humanitarian Aid Situations and Emergencies (PALCHASE) and the WHO Eastern Mediterranean Regional Office helped us develop a survey currently being distributed to practitioners and policymakers. Interviews are also being conducted with practitioners and policymakers working with humanitarian organisations. have shared stories about people’s deaths, good and bad, and about the people who tried to make those deaths better. These stories are powerful and important. They are also, often, raw: interviewees revisit a story more than once, eager to clarify a point, to add details, to raise questions. These are not stories that have been told enough times to become polished or stories that fit a clear template.

Many of the people who have generously shared their time and experiences have also thanked us for creating a space to think and talk about these questions. The ethical issues surrounding the provision of palliative care in humanitarian settings are an ongoing concern for the people with whom we have spoken. Our one challenge is in locating voices of dissent, or at least people taking critical views about the validity of palliative care in humanitarian response.

One other thing is becoming clear: the way palliative care is perceived and practised in humanitarian settings is changing. Collaborators and participants with long careers in the field have told us how their own sense of the need for such care, or their colleagues’ receptivity to these ideas, has evolved. Ten years ago, a special series exploring palliative care in contexts of humanitarian crisis might have seemed inconsistent with the goals of aid; now, it seems timely.

Have you worked in the field of humanitarian healthcare in the last two years? If you have, please complete our survey . . .

Please take 15 minutes to add your voice to a global discussion on current practices and needs related to non-curative health care in humanitarian emergencies.

Links and resources

Follow the EAPC Blog for more stories in this series.

More about the authors . . .
Dr Lisa Schwartz is the Arnold L. Johnson Chair in Health Care Ethics with the Faculty of Health Sciences and an Associate Professor in the Department of Clinical Epidemiology and Biostatistics, Associate Director of the Centre for Health Economics and Policy Analysis (CHEPA), and Associate Member of the Department of Philosophy, at McMaster University.
Dr Matthew Hunt is an Associate Professor and the Director of Research in the School of Physical and Occupational Therapy at McGill University, as well as a researcher at the Center for Interdisciplinary Research in Rehabilitation and an affiliate member of the McGill Biomedical Ethics Unit and Institute for Health and Social Policy.
Dr Elysée Nouvet is an Assistant Professor in the Department of Clinical Epidemiology and Biostatistics and a Domain Planner (Ethics and Moral Reasoning) with the Michael G. DeGroote School of Medicine, at McMaster University.
Ani Chénier is a research coordinator with the Humanitarian Healthcare Ethics Research Group at McMaster University.

 

Posted in ADVOCACY & POLICY, Palliative care in humanitarian crises | Tagged | 2 Comments

Cross-national comparisons today and in the future – An interview with Dr Lara Pivodic, winner of the Palliative Medicine Early Researcher Award

 

Highlights of every EAPC Congress are the EAPC Researcher Awards, which recognize and support the work of scientists and clinicians who make an outstanding contribution to palliative care research. For the first time one of the three awards is sponsored by the journal, ‘Palliative Medicine’.

Dr Lara Pivodic, a postdoctoral fellow of the AXA Research Fund and a postdoctoral researcher at Vrije Universiteit Brussel (End-of-Life Care Research Group) and KU Leuven (Centre for Biomedical Ethics and Law), Belgium, talks to us about her research career and her thoughts on winning the award last week in Madrid.

What are your main areas of expertise?

Dr Lara Pivodic

Lara Pivodic: My main areas of expertise are ageing and palliative care. Within these fields, I conduct population-based and cross-national research, as well as theory-based intervention development. I aim to obtain the evidence that policy-makers and healthcare professionals need to ensure access to high-quality palliative care for the growing population of older people. I focus particularly on primary care and care homes – care settings are becoming increasingly important as a result of demographic and epidemiological transitions.

Cross-national research has been one of the overarching themes of my work. I completed my doctoral degree as a Marie Curie PhD scholarship holder in a European Commission-funded Initial Training Network (EURO IMPACT) with a very strong focus on international comparative research. As a postdoctoral researcher, I continued working on EC-funded projects that study palliative care for older people in different countries.

Tell us about your research to improve the care of older people

LP: I am currently completing a Postdoctoral Fellowship of the AXA Research Fund with the End-of-Life Care Research Group at Vrije Universiteit Brussel. I am studying the quality of end-of-life care of people aged 80 years or over and related public policy in Belgium. This includes an epidemiological study of quality indicators of end-of-life care as well as a documentary analysis of policy documents and consultations with stakeholders in relevant public policy areas. I aim to determine which public policy changes are necessary to improve shortcomings in the quality of end-of-life care for older people in Belgium. Furthermore, I am using qualitative methods to study ways of communicating research evidence to policy-makers in the most effective way.

I am also involved as a postdoctoral researcher in several other projects of the Ageing and Palliative Care programme of our research group. I participate in the EU-funded PACE project. Its aim is to map palliative care systems in care homes in Europe, conduct a population-based study of quality of palliative care, and a cluster randomised controlled trial of the PACE Steps to Success palliative care intervention in care homes in six European countries.

Together with Professor Lieve Van den Block, I am participating in the EU-funded Innovative Training Network INDUCT. For this project, we are hosting two international Early Stage Researchers (Rose Miranda and Annelien van Dael) who study palliative care interventions as a health technology for people with dementia.

Finally, I am involved in the development and evaluation of an advance care planning intervention in care homes through a project funded by the Research Foundation Flanders. Our PhD student, Joni Gilissen, has written about the first findings of this study ‘Preconditions for successful advance care planning’ on the EAPC blog.

Lara Pivodic (centre) receiving the Palliative Medicine Early Researcher Award in Madrid from Lieve Van den Block and Carlo Leget

What does winning the Palliative Medicine Early Researcher Award mean to you?

LP: I am honoured and greatly appreciate the visibility that this award gives to my population-based research on palliative care, and to my achievements as an early career researcher.

But more importantly, besides recognizing me personally as a researcher, this award shines a light on the insights that my colleagues and I have gained from studying end-of-life care in different European countries. My plenary lecture at the EAPC World Congress in Madrid was an exciting opportunity to highlight what we have learned from cross-national comparisons of where people die, transitions between care settings, and provision and quality of palliative care towards the end of life. I believe that palliative care – like many other health domains – can greatly benefit from more, and well-executed, cross-national research.

I hope that this award will help me to continue drawing the attention of our research community to the ways in which we can use cross-national research to help policy-makers improve timely access to high-quality palliative care to all those who need it – in Europe and beyond.

Do you have any hints or tips for other young researchers who may be involved in cross-national research projects?

LP:

  • Familiarise yourself with all the possibilities and limitations of cross-national research early on
    The challenge is not to be satisfied with the most obvious explanations for your findings, but to determine what are the best follow-up questions and hypotheses that will allow you to get closer to understanding the phenomena you are studying. 
  • Remember that ‘country’ and ‘culture’ are multi-layered concepts rather than simple ‘variables’
    Try not to be tempted by simple or stereotypical explanations of your findings (e.g. characteristics sometimes attributed to ‘northern’ and ‘southern’ countries or ‘individualistic’ versus ‘collectivist’ societies). So far, cross-national research has shown that explanations are much more complex than that.
  • Speak to people as well as reading policy-documents and scientific literature
    You will discover characteristics and peculiarities of policies that cannot be found in publicly available documents. Use opportunities from international research partners to learn how different aspects of palliative care are organised in different countries. While working on my PhD, I exchanged thoughts and ideas about my cross-national research with colleagues from diverse fields such as anthropology, sociology, political sciences, nursing, health sciences, as well as public policy makers.
  • Collaborate with researchers internationally
    Complete one or several research stays abroad. Find potential hosts for research visits through international projects you or your advisors are involved in, or by contacting people you would like to work with or learn from, even if you don’t know them in person. I have hardly ever encountered an academic who was not interested in collaborating or sharing their knowledge and experience. Use this experience to build networks based on shared research interests.
  • Find the right advisors
    It will help you greatly to work with an advisor who is familiar with the challenges and possibilities of cross-national research, and who will guide you in making sense of your findings. I am lucky to have had excellent supervisors as part of my PhD programme in Brussels: Prof Lieve Van den Block, Prof Joachim Cohen, Prof Luc Deliens, Prof Koen Pardon, and during my appointment as Visiting Research Associate at Cicely Saunders Institute, King’s College London: Dr Richard Harding, Prof Irene Higginson, Dr Barbara Gomes.

When embarking on a PhD, find an advisor who encourages and challenges you in equal measure and who helps you in establishing the international contacts that you need to carry out meaningful cross-national research.

Outside of palliative care, what do you like to do to relax and unwind?

LP: In my spare time, I enjoy taking care of my little city garden, going to live concerts at one of the many great venues in Brussels, and relaxing through meditation or by playing the piano. I like meeting my friends, getting lost in the sounds and smells of Brussels’ weekend markets, and discovering new places in the city by bicycle. One of my big passions is travelling, so every now and then I get out of Brussels and discover new places near and far. But most of my travels still lead me ‘home’ to my family in Austria and Bosnia.

You can read more interviews with EAPC Researcher Award winners and other posts relating to the EAPC World Congress on the EAPC Blog.

Posted in 15th World Congress Madrid, EAPC ACTIVITIES, EAPC Congresses, EAPC Researcher Awards, RESEARCH | Tagged | Leave a comment

Dignity and other lessons from Portuguese clinical research – An interview with Dr Miguel Julião winner of the EAPC Clinical Impact Award

LIVE FROM THE 15TH WORLD CONGRESS OF THE EUROPEAN ASSOCIATION FOR PALLIATIVE CARE IN MADRID . . .

Highlights of every EAPC Congress are the EAPC Researcher Awards, which recognize and support the work of scientists and clinicians who make an outstanding contribution to palliative care research. 

Dr Miguel Julião, a visiting professor to the School of Medicine, University of Minho, Braga, Portugal, talks to us about his research career and his thoughts on winning the award yesterday in Madrid.

Can you tell us about your personal experience and involvement in palliative care?

Dr Miguel Julião

Dr Miguel JuliãoI was ‘randomly touched’ by palliative care when, as a medical student, I did an optional module on end-of-life care to obtain credits for my course at the Faculty of Medicine of the University of Lisbon. After the first class, I decided to devote myself to palliative care permanently – and the dream of becoming a plastic surgeon disappeared . . .

At the Faculty, I developed a strong interest in palliative care, investing my time and effort in pre and postgraduate teaching, research and clinical practice in palliative medicine. To expand my view of palliative care from a cultural perspective, I travelled to the United States of America, Canada and Spain, engaging with new and different palliative care perspectives, learning a lot and making many of the important contacts that I still have today.

I had the opportunity to be in touch with many wonderful physicians and researchers. These connections have helped me to build a strong foundation as an academic and physician, supporting my work in palliative care in three areas: caring for people as a physician, teaching palliative care and developing clinical research in palliative care.

I had the honour of opening some palliative care units in Portugal, some of which are considered to be examples of excellence in care. I moved to the University of Minho´s School of Medicine where I hold an academic position as an Invited Professor, with responsibility for palliative care research and teaching to undergraduate and postgraduate students. I also contribute to programmes in other Portuguese universities and post-graduate teaching institutes.

To sum up, most of my time is spent happily dedicated to palliative care: caring for terminally ill people and their families, teaching and investigating in the field of palliative medicine.

What is the current status of palliative care in Portugal?

MJ: Portugal is currently undergoing reform by the National Palliative Care Network in several areas. Although Portugal has been investing in palliative care for several years, there are still many patients and families that would benefit from a palliative care approach and multidisciplinary follow-up.

A huge effort has been made in academic and research areas: Portugal now has accredited and high-quality palliative care Master’s and post-graduate courses. Since this last academic year, two Portuguese Medical Schools have implemented compulsory palliative care education for undergraduate medical students. The teaching experience has been amazing and the students´ feedback is very positive and supportive.

Miguel Juliao (centre) receives the EAPC Researcher Clinical Impact Award from Lieve Van den Block and Carlo Leget at the EAPC World Research Congress in Madrid

What are your main areas of expertise?

MJ: I have been really interested in the psychosocial aspects of end-of-life care – what I call the ‘end-of-life psychosocial experience’ in which we encounter dignity-related distress, desire for death, demoralisation, feeling a burden and hopelessness. I have the great honour and opportunity of working closely with Professor Harvey Chochinov and his research team at Manitoba University, Canada. I have learned so many things along this journey together, besides the more scientific aspects.

My main research focus is dignity in terminally ill patients and older people, and Dignity Therapy (DT). I defended my PhD thesis on DT in July 2014 at the Faculty of Medicine, University of Lisbon. We developed a randomized controlled trial (RCT) with the aim of studying the effects of DT in several psychosocial variables of palliative care patients and their families. 

Tell us about any research projects in which you are currently involved, and any of the main findings so far?

MJ: I continue to be profoundly aware of, and interested in, the ‘end-of-life psychosocial experience’. Terminally ill patients ‘bring’ to their end of life many different issues that are still not entirely understood but deserve a better understanding. I think that each clinical contact is an opportunity to make a change in people’s lives (and in our own life) and is also a clinical research opportunity. We have to be very attentive. This end-of-life experience is a deep and intense one and human behaviour is very interesting to observe and ‘listen to’. I am truly fascinated with this complexity.

After conducting an RCT using a quantitative approach I feel the need to move forward and grow myself as a researcher and as a person. I am also very interested in the qualitative approaches in clinical research.

I am developing research in the concept of dignity for elderly people; in personhood versus patienthood. We are concluding our content analysis of the DT´s legacy documents and are now writing our paper on this issue. It has been wonderful to discover what people say in these documents and what they want to transmit to their loved ones and to the world as their legacy after death.

We published the surprise question Portuguese validation, and we are validating the dignity question and the TIME (This Is ME) questionnaire developed by Chochinov and his co-workers. I would say that our research group is really investing effort, ideas and time in dignity and personhood clinical research. We are also developing research into the impact and acceptance of palliative care teaching in medical students.

So far, we have no data retrieved but it is all taking shape along the way. We are having fun doing relevant research and that´s halfway to being successful!

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

MJ: This award gives me positive encouragement to continue doing research that makes a difference in academic and research fields. But most of all it’s a clear and important sign that pursuing clinically relevant research makes a difference in the lives of patients and families when they are confronted by terminal illness, and the suffering that is involved.

Winning an award also gives you a responsibility – one that I am taking with ‘my arms wide open’. And it helps to give meaning to those hard, and more depressing moments, where you feel helpless, alone and exhausted as a researcher without any grants to support your ideas and protocols.

What do you like to do to relax and unwind, outside of palliative care?

MJ: I love being with my family – along with patients, they are truly the reason for all I have achieved. All my work – each effort, the ups and downs, each paragraph – is dedicated to them.

I love horses and riding – although I don´t do it often these days – and I love cultivating and caring for bonsai.

I need music – especially classical music and Bach´s organ music – literature, and paintings. Artists have this rare gift of telling the world things that are just not possible in any other way. And at the end of the day … I love people. As a professor of mine once wrote, “Our future is profoundly relational.” 

Follow the EAPC Blog to read more posts from the 15th EAPC World Congress in Madrid. We’ll be publishing an interview with Dr Lara Pivodic, winner of the Palliative Medicine EAPC Researcher Award, next week.

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Palliative Care for People with Intellectual Disabilities: An International Perspective – An interview with Dr Irene Tuffrey-Wijne, winner of the EAPC Post-Doctoral Award

LIVE FROM THE 15th EAPC WORLD CONGRESS IN MADRID . . .

Highlights of every EAPC Congress are the EAPC Researcher Awards, which recognise and support the work of scientists and clinicians who make an outstanding contribution to palliative care research. 

Dr Irene Tuffrey-Wijne, Associate Professor in Intellectual Disability and Palliative Care at Kingston University and St George’s University of London, UK, and Honorary Senior Research Fellow, Maastricht University, Netherlands, talks to us about her research career and her thoughts on winning the award that she received in Madrid today.

You have extensive clinical experience in both intellectual disability and palliative care. What motivated your interest in this area?

Irene Tuffrey-Wijne (centre) receives her award from Lieve Van den Block and Carlo Leget

Irene Tuffrey-Wijne: Before my job as a hospice palliative care nurse (which I did for eight years), I spent eight years in a L’Arche community, where people with and without intellectual disabilities live and work together. That experience of real sharing has shaped my life, my work and the way in which I approach research. During my hospice years in the 1990s, it struck me that there were very, very few patients who had intellectual disabilities. It made me wonder what happened to them when they were terminally ill. I searched the literature but could find absolutely nothing on the end-of-life care needs of people with intellectual disabilities. So when my local university got some funding for a project to improve palliative care for people with intellectual disabilities and needed a nurse to run it I jumped at it. I soon realised that it was hard to improve practice without knowledge. That’s why I decided to focus on doing research in this field.

Tell us about the programme of research on intellectual disability, cancer and palliative care that led to your PhD, and some of the main findings?

IT-WMy first major study (2005-2008) was called ‘The Veronica Project’ (named after a woman with Down syndrome who died of cancer) and looked at the experiences of 13 people with intellectual disabilities who had cancer. To understand their point of view I became like an anthropologist, using ethnographic methods and spending a lot of time with each participant. It was profoundly moving and illuminating. Most participants died during the study. We later employed Amanda Cresswell, one of the only two survivors in that study, as a co-researcher – and she is here today in Madrid to help me with my plenary presentation. During the Veronica Project, I did my PhD by publication at Maastricht University in the Netherlands (completed in 2007). It consisted of a literature review; one of the case studies from The Veronica Project; and a couple of shorter research studies which I did ‘on the side’, including one where I had adapted the Nominal Group Technique for use with people with intellectual disabilities, so I could get their views on end-of-life care provision.

Amanda Cresswell (left) and Irene Tuffrey-Wijne, both ‘experts-by-experience’ (having survived cancer treatments). Amanda and Irene are pictured here wearing their chemotherapy wigs

The key finding was the huge importance of listening to people with intellectual disabilities. We need to try and understand their lives and perspectives, if we want to provide them with adequate support at the end of life. This may require some creativity and an adaptation of our usual methods of communication – but most of all, it requires openness and a willingness to listen.

My later research focused on another key finding, which was the difficulty everyone had in knowing whether, and how, to tell people that they are ill and are going to die. This led to the development of a new model for breaking bad news (see the website Breaking Bad News).  My current research is also around communication; it’s called the ‘Talking About Dying study’.

Inclusion of people with intellectual disabilities as study participants and as salaried co-researchers is said to be a key part of your work. Do you have any tips for other researchers on how you have managed to achieve this level of user involvement?

IT-W: Perhaps it would have been better to ask my co-researchers that question – I am still learning! First of all, make sure that you can explain everything you do in an easy way. When I defended my PhD, one of the professors remarked that he had never before seen a PhD that included an easy-read, accessible summary with pictures!

I have learnt that meaningful involvement requires a lot of time and resources. It is important that people’s involvement is not tokenistic, and that everyone understands what their role is. It took me years to understand that everyone has a different role. For example, when it comes to co-facilitating focus groups, Amanda’s contribution was mostly that of a ‘role model’, helping to break down barriers and showing participants that it is OK to share experiences, to have an opinion, or not to know the answer.

For our Research Advisory Group meetings, we need to write the agenda and the minutes in easy-read format. It’s excellent for ensuring that your aims, objectives and methods are clear. I have found that if I cannot explain things in a simple way, it’s usually because there is actually something wrong with it! For meetings involving different stakeholder groups, I usually meet with the co-researchers and advisors with intellectual disabilities beforehand, so they are more prepared for the meeting. Let me admit, though, that the user involvement is not yet as good as I would like it to be. To do it properly, we would need to invest not only in paying co-researchers but also paying for extra research assistance to support their work. I don’t think funders quite realise how much investment is needed for this, and how much time it takes. I’m also constantly learning new ways to adapt research methods.

On top of your academic work, you are a trustee of the Palliative Care of People with Learning Disabilities (PCPLD) Network and you were Chair of the EAPC Taskforce on Palliative Care for People with Intellectual Disabilities until its completion. What have been the biggest achievements of these important groups?

IT-WI think that through our work with the PCPLD Network and the EAPC Taskforce, we have raised awareness. The PCPLD Network is coming up to its 20th anniversary. From the early years, dedicated members kept chipping away, doggedly turning up at EAPC congresses with posters and, increasingly, oral papers. When I became chair of the PCPLD Network in 2008, we launched a website that continues to provide a platform for practitioners and families to share resources and information. We have just gained charitable status, and are now looking at ways to build on our achievements.

The EAPC Taskforce has brought together practitioners and researchers from across Europe, sharing ideas about best practice. Our taskforce concluded with the publication of ‘Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care’ and this was recently translated into French.

I think it is tremendously exciting that the palliative care needs of people with intellectual disabilities are now really getting attention. 

What does winning the EAPC Post-Doctoral Award mean to you?

IT-W: I am absolutely thrilled to have won this award. I see it as recognition, not so much of myself and my research, but of the importance of the needs of people with intellectual disabilities. They are such a marginalised group, and they really do need special attention in order to have their needs met. For years, I have argued that if you can give good palliative care to people who are not able to tell you what they want, and who may express their symptoms and distress in unexpected and unconventional ways, then you can meet the needs of any of your patients. I am really pleased to address the congress today in a plenary session and share my learning.

Outside of palliative care, what do you like to do to relax and unwind?

IT-W: Singing … Learning to play the cello … I have also just discovered the thrill of ‘cold-water-swimming’ in an outdoor pool. The coldest it got this winter was 2°C. One thing is sure: if I manage to get to a pool in Madrid, it will feel positively tropical!

COME ALONG TO THE OPEN MEETING OF THE EAPC REFERENCE GROUP ON INTELLECTUAL DISABILITIES ON SATURDAY 20 MAY , ROOM N111 AT 08h00 – all welcome if you’re attending the EAPC WORLD CONGRESS IN MADRID …

Follow the EAPC Blog for more interviews with EAPC Researcher Award winners:  Dr Miguel Julião (tomorrow) and Dr Lara Pivodic (Monday).  Read more posts on the EAPC World Congress in Madrid on the EAPC Blog

 

Posted in 15th World Congress Madrid, EAPC Congresses, EAPC Researcher Awards, Intellectual disabilities, PATIENT & FAMILY CARE | Tagged | Leave a comment