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

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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.

 

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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.

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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

 

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The first mapping study for palliative care development in the Eastern Mediterranean region and Africa launched at EAPC World Congress

 


HAGA CLIC AQUÍ PARA OBTENER LA VERSIÓN EN ESPAÑOL

Reporting live from the 15th EAPC World Congress in Madrid, Eduardo Garralda, Research Assistant at the ATLANTES Research Programme at the University of Navarra, Spain, explains the background to two key advocacy tools that are being launched at the congress.

The ATLANTES Research Programme of the Institute for Culture and Society at the University of Navarra has directed and coordinated the production of two regional Atlases, one for the Eastern Mediterranean region and another for the African continent, in close collaboration with local, regional, and international institutions.

Atlas of Palliative Care in the Eastern Mediterranean Region

This Atlas is the result of a collaborative effort between the Lebanese Centre for Palliative Care – Balsam, and the ATLANTES Research Programme. ATLANTES has worked as the scientific advisor on the project since its inception and as coordinator of the editorial process of the Atlas. This Atlas would not have been possible without the contributions of the International Association for Hospice and Palliative Care (IAHPC) and the World Health Organization Eastern Mediterranean Regional Office (WHO EMRO).

Balsam is a non-governmental organisation working in palliative care development in Lebanon and across the region through patient care, advocacy, training, capacity building, and research in palliative care.

The working team comprised Carlos Centeno and Eduardo Garralda (ATLANTES); John Rhee (Icahn School of Medicine at Mount Sinai, New York); Liliana de Lima (IAHPC); and Hibah Osman, Alaa Rihan, Arafat Tfayli and Rana Salem (Balsam). Based in Pamplona (Spain) and Beirut (Lebanon), the researchers on both sides of the Mediterranean have collaborated since the beginning of the project with the common objective of producing a study to inform and promote palliative care development across the Eastern Mediterranean region.

The countries making up this region are at very early stages of palliative care development, and only a small fraction of patients (5 per cent) that need palliative care actually receive it.

The Atlas of Palliative Care in the Eastern Mediterranean Region is the first systematic attempt to assess the status of resources, activities, and needs of palliative care in the region. It provides a comparative picture of the current state of palliative care in simple and clear graphics, utilising texts, tables, figures and maps that reproduce information given by national palliative care leaders in the Eastern Mediterranean. This information is essential for the appropriate planning of the development of palliative care for this region.

APCA Atlas of Palliative Care in Africa

The APCA Atlas of Palliative Care in Africa was conceived in January 2016 with the aim of providing comprehensive and up-to-date information on the progress and status of palliative care in Africa. The APCA Atlas is a collaborative effort amongst local experts and several international institutions, including the African Palliative Care Association (APCA), the International Association for Hospice and Palliative Care (IAHPC), the Arnhold Institute for Global Health at the Icahn School of Medicine at Mount Sinai, and the ATLANTES Research Programme.

Launch of the APCA Atlas at the EAPC World Congress in Madrid. Pictu red are Carlos Centeno (standing), with Dr Emmanuel Luyirika and Phil Larkin (seated)

The APCA Atlas is being published at a time in which there has been palliative care growth in African countries but, at the same time, this progress has been largely unequal and heterogeneous. The last comprehensive overview of palliative care progress in Africa was published more than a decade ago. The APCA Atlas, the first report of its kind, analyses, comparatively, the progress of palliative care in Africa and provides data for 48 countries out of the 54 that make up the African continent.

Over the following months, the co-authors will focus on the dissemination of the data to key experts in Africa, so that the Atlas can be used as an advocacy tool in national governments and Ministries of Health. We would like to thank all those that have donated time and effort to bring this work to completion: in-country African key experts, the international committee of experts on indicators, and others that have supported the APCA Atlas of Palliative Care in Africa.

The APCA Atlas was launched yesterday at the EAPC World Congress and the Atlas for the Eastern Mediterranean region will be launched this afternoon in Room N109/N110 of the congress venue.

Look out for more posts on the EAPC Blog when the regional experts will report on the most relevant findings of each Atlas: (Dr Hibah Osman, for the Eastern Mediterranean region, and Dr Emmanuel Luyirika for Africa).

Find out more . . .

 

El primer mapeo del desarrollo de cuidados paliativos en las regiones del Mediterráneo Oriental y Africa se presenta en el Congreso Mundial de la EAPC

Informando en vivo desde el XV Congreso Mundial de la EAPC, Eduardo Garralda, técnico de investigación del Programa de Investigación ATLANTES de la Universidad de Navarra, España, explica el contexto de dos herramientas clave para la defensa y promoción de cuidados paliativos, que serán presentadas en el congreso.

El Programa de Investigación ATLANTES del Instituto Cultura y Sociedad, Universidad de Navarra, ha dirigido y coordinado la producción de dos Atlas regionales; uno para la región del Mediterráneo Oriental, y otro para el continente Africano, ambos en estrecha colaboración con instituciones locales, regionales e internacionales.

La región del Mediterráneo Oriental

Este Atlas es el resultado de un esfuerzo colaborativo entre el Centro Libanés para los Cuidados Paliativos – Balsam, y el equipo de investigación ATLANTES. ATLANTES ha trabajado como asesor científico desde la concepción del proyecto y como coordinador del proceso editorial del Atlas. Este Atlas no hubiera sido posible sin las contribuciones de la Asociación Internacional de Hospice y Cuidados Paliativos (IAHPC) y la Organización Mundial de la Salud, Oficina Regional del Mediterráneo Oriental (WHO EMRO).

Balsam es una organización no gubernamental que trabaja en el desarrollo de cuidados paliativos tanto en el Líbano, como en toda la región, a través del cuidado del paciente, la promoción y abogacía, la formación, la construcción de capacidades, y la investigación en cuidados paliativos.

El equipo de investigación ha estado compuesto por Carlos Centeno y Eduardo Garralda (ATLANTES); John Rhee (Icahn School of Medicine at Mount Sinai, Nueva York); Liliana de Lima (IAHPC); e Hibah Osman, Alaa Rihan, Arafat Tfayli y Rana Salem (Balsam). Con base en Pamplona (España) y en Beirut (Líbano), los investigadores de ambos extremos del mediterráneo han colaborado desde el principio del proyecto con el objetivo común de producir un estudio capaz de informar y promocionar el desarrollo de cuidados paliativos en la región del Mediterráneo Oriental.

Los países que conforman esta región se hallan en fases muy iniciales del desarrollo, y tan sólo una pequeña porción de pacientes (se estima un 5 por ciento) que necesitan cuidados paliativos, de hecho los reciben.

El Atlas de Cuidados Paliativos en la Región del Mediterráneo Oriental es el primer intento de evaluar de forma sistemática el estado de los recursos, las actividades, y las necesidades de cuidados paliativos en la región. Éste muestra una foto comparativa de la situación actual del desarrollo en gráficos sencillos y claros; utilizando textos, tablas, figuras y mapas, que reproducen la información obtenida de los líderes nacionales de cuidados paliativos de este contexto geográfico. Esta información es esencial para una apropiada planificación del desarrollo de los cuidados paliativos en la región.

África

El Atlas APCA de Cuidados Paliativos en África fue concebido en enero de 2016 con el objeto de facilitar la información más completa y actualizada posible sobre el progreso y estado de cuidados paliativos en África. Este Atlas APCA es fruto de la colaboración internacional entre expertos locales y varias instituciones internacionales como la Asociación Africana de Cuidados Paliativos (APCA), la Asociación Internacional de Hospice y Cuidados Paliativos (IAHPC), el Arnhold Institute for Global Health at the Icahn School of Medicine at Mount Sinai, y el Programa de Investigación ATLANTES.

Presentacion del Atlas APCA en el Congreso Mundial de la EAPC en Madrid. En la fotografia, Carlos Centeno (de pie), Dr Emmanuel Luyirika y Phil Larkin (sentados)

EL Atlas APCA se publica en un momento de crecimiento y expansión de los cuidados paliativos en África, pero que al mismo tiempo, lo hace de forma desigual y heterogénea. La última revisión completa que estudió el desarrollo de cuidados paliativos se publicó hace más de una decada. El Atlas APCA, primer informe de esta naturaleza, analiza comparativamente el progreso de los cuidados paliativos en África y facilita información sobre 48 países de los 54 que conforman el continente Africano.

En los próximos meses, los co-autores se centrarán en la difusión de los datos a los expertos clave en Africa, para que este Atlas APCA pueda utilizarse como herramienta de defensa y promoción de cuidados paliativos en los gobiernos nacionales y Ministerios de Salud. Nos gustaría agradecer a todos aquellos que han dedicado tiempo y esfuerzo para hacer este proyecto realidad: expertos locales, comité internacional de expertos en indicadores, y otros que han apoyado de algún modo el Atlas APCA de Cuidados Paliativos en Africa.

El Atlas APCA fue presentado ayer en el Congreso Mundial de la EAPC y el Atlas de Cuidados Paliativos en la Región del Mediterráneo Oriental se presentará esta tarde en la sala N109/N110 del palacio de congresos.

Proximamente más posts en el Blog de la EAPC dónde los expertos regionales explicarán los hallazgos más relevantes de cada Atlas: (La Dra. Hibah Osman, para la región del Mediterráneo Oriental, y el Dr. Emmanuel Luyirika para África).

Para saber más . . .

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Finding our way – palliative care in humanitarian situations

Continuing our new series about palliative care in the context of humanitarian crisis. In the coming weeks, we shall be looking 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 Joan Marston, Co-chair of PALCHASE – Palliative Care in Humanitarian Aid Situations and Emergencies – and ICPCN (International Children’s Palliative Care Network) Global Ambassador.

Joan Marston

I often wonder whether we have become almost inured to the suffering around the world, overwhelmed as we are by images of starving children, soldiers fighting, rescuers digging into rubble, overloaded boats sinking and refugees seeking help and asylum. The needs of those affected in humanitarian situations, whether immediate or prolonged, are immense, with the necessity for providing basic support understandably a priority.

As palliative care practitioners and human rights activists, we have almost all been guilty of overlooking a population that is difficult to access, growing, mobile, but where there is an increasing realisation that palliative care has a role to play.

For many of us the ‘wake up call’ has come from images of children and their suffering. I found the naming of a new syndrome by Dr MK Hamza, Head of the Mental Health Division of the Syrian American Medical Society, particularly haunting. ‘Human Devastation Syndrome’ goes some way to describing the impact of this unutterable horror that children are experiencing.

When the need is overwhelming, spread around the world, resources are limited and life-sustaining interventions are paramount, where can palliative care find an entry point? We have the knowledge and skills to provide palliative care; we know what medicines are required and we know who needs palliative care.

We are very resourceful! When the hospice palliative care community in sub-Saharan Africa responded effectively to the HIV and AIDS epidemic, it was a case of doing what we knew: applying principles, learning quickly, being resourceful and adapting to a new, rapidly growing patient population. Practical, applied compassion was the driver. We overcame challenges with limited resources, and we can do this again. There are examples of palliative care being provided in humanitarian and post-humanitarian settings – Nepal, Uganda, Greece, Jordan, Germany and Austria are all examples. Research is being carried out and planned. Models are to be piloted and humanitarian response organisations, such as Médecins Sans Frontières/Doctors without Borders (MSF), are open to including palliative care. The World Health Organization has a Community of Practice looking to develop guidance for palliative care in humanitarian situations; and we are hopeful that the next edition of the Sphere Handbook will contain relevant information.

A strength of palliative care is multidisciplinary teamwork; the setting up of PALCHASE (Palliative Care in Humanitarian Aid Situations and Emergencies) and a group that is forming a European Association for Palliative Care task force have brought together those with many different types of expertise. Perhaps in itself a new model for palliative care? The crisis is now and our response needs to be in the present.

If you would like to be involved in PALCHASE please email Joan Marston.

References
James Smith, Tamman Aloudat. Palliative Medicine. 2017. Vol. 31 (2) 99-101.
J Marston, L De Lima, RA Powell. Palliative care in complex humanitarian crisis response. The Lancet. Nov 2015. Vol 386, No.10007, P.1940.

Links and further reading

If you’re attending the 15th EAPC World Congress Madrid, please come along to our meetings . . .

The Open Meeting of the EAPC Task Force on Refugees and Migrants is on Friday 19 May 2017 at 16h00-16h30. The ‘Meet the expert’ session on ‘Palliative Care Needs of Refugees and Asylum Seekers’ is on Saturday 20 May at 08h00-08h45. Everyone is welcome.

Follow the EAPC Blog for more stories in this series. 

 

Posted in 15th World Congress Madrid, ADVOCACY & POLICY, EAPC Congresses, Palliative care in humanitarian crises | Tagged | 2 Comments