Prof Christoph Ostgathe
- Nominated by: DGP
- Profession: Physician
- Second term on board
Dr Jeroen Hasselaar
Country: The Netherlands
- Vice President
- Nominated by: Palliactief
- Profession: Researcher (Palliative care & Ethics)
Dr Sandra Martins Pereira
- Vice President
- Nominated by: APCP
- Profession: Nurse
Dr Sebastien Moine
- Vice president
- Nominated by: SFAP
- Profession: Physician
- Second term on board
Prof Catherine Walshe
Country: United Kingdom
- Nominated by: PCRS
- Profession: Nurse
- Second term on board
- Nominated by: FPCF
- Profession: Physician
Dr Karl Bitschnau
- Nominated by: DVHÖ
- Profession: Social Worker
Dr Martin Loucka
Country: Czech Republic
- Nominated by: CSPM
- Profession: Psychologist
Prof Sonja McIlfatrick
Country: Northern Ireland
- Nominated by: AIIHPC
- Profession: Nurse
Prof Daniela Mosoiu
- Nominated by: ANIP
- Profession: Physician
- Second term on board
- Nominated by: FFB
- Profession: Theologist and healthcare worker
Prof Josep Porta Sales
Dr Danila Valenti
- Nominated by: SICP
- Profession: Physician
- Second term on board
Prof Augusto Caraceni
- Profession: Physician
- Chair of the EAPC RN
- (Board attendee)
Prof Franco de Conno
- Honorary Director
- Profession: Physician
- Founder & Past Chair of the EAPC Research Network
About EAPC Board Membership
Board elections take place every four years. The next election will take place at the EAPC congress in 2023.
Candidates for the EAPC Board of Directors are proposed by EAPC National Associations. Candidates can also be proposed by a minimum of five individual EAPC members. EAPC Board members can stand once for re-election, so the maximum term of office is eight years. As palliative care is a multidisciplinary specialty, this should be reflected in the constitution of the board. Board members are nominated by national associations or, in a few cases, by individual members. They are elected as individuals to service the EAPC for a four-year term, with one additional opportunity to be re-elected. The EAPC is keen to have board members from all disciplines, at all stages of their career, and from all parts of Europe.
Proposed candidates (new nominees and nominees for re-election to the EAPC Board) must be:
- a member of EAPC with the right to vote. Candidates are required to maintain full voting membership throughout their term on the board either as an individual EAPC member or a board member of their National Organisation
- supported in writing by their EAPC National Association or five EAPC members with full voting membership
- actively involved in Palliative Care in their own country
- able to give sufficient time to the activities of the EAPC and attend a minimum of 50% of all board meetings
- living or working in Europe
- competent in English
What is expected of EAPC Board members?
During their tenure, EAPC board members are expected to be involved in a range of projects and initiatives and to play a significant role in the work of the EAPC. These initiatives are in line with the strategic objectives of the EAPC and include an active contribution to the programmes of the EAPC congresses and meetings. Each EAPC task force, reference group and white paper writing group is also allocated a board link. In order to ensure that the EAPC is responsive to its members, board members are asked to maintain regular contact with their national organisations and may also be asked to contact other member associations from other countries.
For more information contact: firstname.lastname@example.org
Personal Statements from Board Members (prior to election)
Over the past four years, it has been a great honour and pleasure for me to serve the EAPC as a board member and Vice-President. Since 2015 – besides these roles in the EAPC – I also had the chance to chair the Scientific Committee of EAPC World Congress in 2017 in Madrid, which was a once-in-a-lifetime experience for me. In case I would be re-elected to the board again I would stand for President. Following the bye-laws, the President of the EAPC is not elected by the associates, but by members of the board.
The years since 2015 have brought changes for our association. I humbly look back at what the pioneers of the EAPC have built up over the past 30 years. However, to sustain these essential achievements, and to ensure that the EAPC stays globally a major voice of all palliative care professionals, the EAPC had and still has to be developed further. A major change was the move to the heart of Europe: Brussels! In addition, some structural adjustments – e.g. the new website, new working groups, cooperation within the EAPC – had to be made to assure the future of the association. Hence, in a changing world more challenges are still ahead of us all.
In the coming years we have to increase the number of, and internal communication with, individual and institutional members. We should intensively foster the exchange with other global/international hospice and palliative care associations to learn from and with them. Our common goal is to further integrate palliative care into all healthcare systems, and thus to relieve multidimensional suffering associated with life-threatening illness for all in need.
As a young anaesthesiologist, I had the opportunity to work for a year at a small palliative care unit in Bonn. From day one, I was infected by the virus! Many of the people (physicians, nurses, social workers, pastoral carers, volunteers) I met in those – for me personally, highly important – years have become close friends. Without them I would not be doing what I am doing today. In the wake of the early pioneers, it was a tremendous experience to be part of a successful effort to move a new idea forward. Back then, I had the enormous luck to be in the right place at the right time. Professor Eberhard Klaschik – one of the early national pioneers – was appointed as the first Chair of Palliative Care in Germany and I suddenly had the chance to start an unexpected and primarily unintended academic career in our field. Later, I joined Professor Raymond Voltz’s team as a senior consultant at the University of Cologne. In 2010, I was appointed as Professor of Palliative Medicine at the University of Erlangen, Bavaria.
I am happy that in my current job I am still able to do all the things that attracted me to this particular field of work: work clinically, teach students and do research in palliative care. Here, my core area is health service research focusing on informal caregivers, tool development, as well as ethical issues in end-of-life care, and currently work on palliative sedation.
For the rest of the day, I try to share as much time as possible with my family. I am a periodic bookworm, bad mountain biker and passive music enthusiast. Apart from that, I support the soccer team of Borussia Mönchengladbach; so far this year they have made me very content, e.g. by beating Bayern München three nil!
Last year, I was asked to sing at the funeral of my grandmother: Ombrai mai fu – which translates as ‘Never was a shade of any tree dearer or more lovely’. When operating on the edges of life and death, palliative care as a profession enters an intimate area of hope, loss and grief. Death, dying, and living with incurable disease are in the first place genuine human experiences of people like you and me, who are in need of support. The heart of the palliative care ‘tree’ is to be care-ful, literally full of care. And we need good, interprofessional knowledge and skills to put that into practice.
For more than 10 years now, I have been working at the Radboud University Medical Center, Nijmegen, the Netherlands. In this centre, I work as a senior researcher in palliative care. Having graduated in both health sciences and ethics, I always liked to combine academic research with relevant societal questions and a PhD thesis about the medical and ethical aspects of palliative sedation was a great opportunity for me. Afterwards, I received grants from national and international scientific organisations to continue my research work (integrated palliative care, telecare, palliative sedation, regional collaborations with homecare). Recently, our university recognized me as one of their research leaders. Besides my research, I have an extensive experience in policy advisory for the Netherlands Federation of University Medical Centers who also asked me to advise on palliative care development. Together with many partners, we have build a national programme and expert centers have been developed at all university medical centers. In 2015 I was elected for the board of our national palliative care association, and also at that time I was appointed as a member of the national palliative care research committee. I also became scientific coordinator and advisor of several international research projects in the field of integrated palliative care and palliative sedation. In my leisure time, my hobbies are running in the forest and to sing and play guitar in the all-stars band, ‘The Palliators’.
If elected to the EAPC board, I would bring a firm background of leading on policy and senior research projects, nationally and internationally. I have worked closely with several past EAPC (vice)-presidents and I realize that the EAPC is in a transition phase having recently changed country of registration and related accountability procedures. I learned how to work with people from different cultural and national backgrounds, and it is a wonderful experience to build bridges together. Especially, in my view, bridges between Northern/Southern European members towards Central/Eastern European members need to be developed more firmly. Also, contact with our overseas African, Asian, Australian and American partner organisations needs to be strengthened and the valuable work of raising awareness of palliative care within the European Union offices must be continued.
My first EAPC congress was in 2005 in Aachen and since then I have seen them grow each year, attracting more attendees from all over the world. Therefore, I also see it as a huge responsibility for the board to continue the high quality of our EAPC congresses.
The first time I heard about palliative care, I was just finishing my nursing degree and wanted to make a difference. This was in the 90s, a couple of years after the creation of the first Portuguese palliative care unit. Soon afterwards, when I first cared for a dying patient, and his daughters, on an acute vascular surgery ward, I felt the need to have the clinical skills to provide excellent palliative care.
Ever since, my interest, engagement and commitment to palliative care have been in crescendo. And, I have been so lucky! So many patients and their loved ones, colleagues, pioneers, students, people I love and who have died already, have inspired me in so many ways to continue to be involved in palliative care.
Nowadays, I work as a researcher at the Institute of Bioethics, Universidade Católica Portuguesa, in the beautiful city of Porto. My main areas of interest are education about palliative care for professionals and citizens, ethical issues in palliative care, decision-making processes, end-of-life decisions, inter-professional relations, integrated palliative care and incorporating ethics into the knowledge-to-action cycle.
After living and working for 10 years in the Azores, I still collaborate with the regional government and organisations to make palliative care more accessible for citizens who live in this outermost region of Europe. It is quite a challenge, but work is in progress and I am so proud to see former students engaging actively in palliative care.
Internationally, I had the privilege of working in the FP7 Marie Curie Euro-IMPACT project, where I worked on the development of a book on palliative care for older people from a public health perspective. Building this book and integrating the contribution of so many worldwide palliative care experts was an amazing journey!
Palliative care is not only a job, but also a passion. Still, when I am not engaged in palliative care activities, I share as much time as possible with my husband, family and friends. I love sharing a cup of tea and conversation, hiking and playing the piano.
I am a proactive supporter of the work of the EAPC. First, I am one of the screening editors of Palliative Medicine, the official journal of the EAPC. Second, I enjoy contributing to its blog, trying to engage and reach other people. Third, I co-chair a task force on the ‘Preparation for Practice in Palliative Care Nursing across the EU’. Finally, I attend the annual EAPC congresses where I do my best to participate actively.
My vision is to combine our diverse voices to reach the most vulnerable ones. I trust that my expertise and enthusiasm in practice, education, research and policy can positively enhance the work of the EAPC.
I am an academic general practitioner (GP) and currently a visiting fellow at the Primary Palliative Care Research Group, University of Edinburgh. I am also co-chair of the EAPC Primary Care Reference Group. Previously, I worked for ten years as a GP in northern France (Picardy), where I participated in the creation of a project aiming to enhance the triggering and delivery of palliative care in primary care. During the same period, I also worked as a physician in a hospital palliative care support team and I got involved in education and research: as an honorary lecturer at the University of Paris 13 (Department of General Practice), and as a research associate at the National Institute of Demographic Studies (INED).
As far as I can remember, my medical practice has always been associated with travel. My first job with the international humanitarian organisation, Doctors of the World, took me to rural Afghanistan. There, I found out how political, economic, social (and regional) determinants could have a dramatic impact on the health of local populations. I also discovered how people experienced severe illness differently, depending on where (and by whom) they were being cared for: whether at home, by the roadside, in a remote area, or in the unfamiliar environment of a hospital.
Back in France, I continued my journey: settled in Paris and commuted to Picardy on a daily basis. It was obviously different from the Afghan mountains, with different people, but they could also face overwhelming suffering, and ways to alleviate it were not always easily accessible, even just one hour away from Paris.
I completed a Master’s in bioethics in 2012 and I became a member of the Scientific Council of the French Palliative Care Association (Société Française d’Accompagnement et de soins palliatifs – SFAP). I also had the privilege of taking part in the steering group of the French National Plan for the Development of Palliative Care (2015-2018), chaired by Dr Vincent Morel, former President of the SFAP. Prior to that, I attended my first EAPC congresses, where I met my mentors in the palliative care community: Professors Scott Murray and Xavier Gómez-Batiste. They welcomed me with kindness and a genuine curiosity about the development of primary palliative care in France.
I am deeply grateful to the SFAP and its President, Dr Anne de la Tour, who support my candidacy. The year 2018 was a milestone on the road to universal health coverage, with the Declaration of Astana highlighting palliative care as a key intervention. If elected to the EAPC Board, I would commit myself to promoting a broader inclusion of palliative care in health systems, particularly at the primary care level and in the community.
When I am not travelling for work, I like to travel with my spouse and our two daughters: to swim in every swimming pool/ sea/ ocean on the way, and to play country music versions of Schubert’s ‘Impromptus’ on the piano.
Working in palliative care is a privilege. As a nurse I was deeply touched when I shared important moments in people’s lives. I have shared births, birthdays, weddings and funerals with people and their families. I have been alongside people in their last moments of life. I have laughed and cried with people as they have lived before they died. I have advocated to meet their needs, and been humbled by their strengths. The person-centred, relational aspect of health care is at the heart of palliative care. This is what matters to most people. But, for me, this is not incompatible with basing what we do on robust evidence. This is why, after nearly 20 years working as a nurse in different palliative care settings, I moved to a career focused on palliative care research. Here, I advocate for people at a different level – working to understand how we can provide better care, and how to translate this understanding into evidence-based practice.
I currently work as Professor of Palliative Care at the International Observatory on End of Life Care at Lancaster University. This means that I support many students around the world as they study palliative care, primarily aimed at gaining a PhD in Palliative Care, and work to improve care in their own countries and settings. I am also involved in a number of different research studies, mostly examining different ways of improving how we can provide care. This includes research understanding the role and impact of volunteers, how we can better care for people with advanced dementia, and the impact of new models of care such as providing round-the-clock specialist palliative care. A passion remains getting evidence in to practice, and I am honoured to work with many palliative care researchers around the world as Editor-in-Chief of Palliative Medicine, the research journal of the EAPC. We’ve worked hard to make the high-quality research we publish reach as many people as possible with a focus on innovative dissemination modes such as our podcasts, and use of social media including twitter, Facebook and Instagram.
It has been a wonderful experience to serve on the EAPC board, and as secretary, for the past nearly four years. We have achieved much in that time, but still have more to do to support palliative care across Europe and beyond. I have been particularly excited by being linked to the EAPC Task Force on Volunteering, contributing to planning the EAPC Volunteering Charter launch and associated advocacy work. I look forward, if elected, to continuing to contribute and be a voice for palliative care across Europe, working to bring organisations together to share experience, best practice, and develop palliative care for all.
Hilda was 42 years old, had three sons and died of a glioblastoma on an early morning in spring. In those days I was a young GP and Hilda was my first palliative patient. This experience was in many ways decisive, both enriching and confronting at the same time. It got under my skin. At the same time it was painfully clear to me that I was poorly trained and not properly skilled, that my education as a physician had not prepared me for this, and that, more in general, our healthcare system was neither interested nor equipped to care for people with a limited life expectancy.
Over the next years, many things changed. I started working as a palliative physician in a palliative centre with eight beds, in a day care centre and with a home care team and I gradually got more involved in the early stages of development of a palliative structure in my country. There was so much to do, and obviously, in a few decades’ time, palliative care became a more broadly accepted and better-organised part of our health system.
However, still very much remains to be done. Education in palliative care for health professionals is largely insufficient and the scientific anchoring of palliative care remains a big challenge. Early involvement of palliative care, before the terminal phase, involvement in any setting, in any disease or condition and not only cancer, involvement of palliative care for vulnerable groups in our society – all of these topics are goals that are still very far from having been reached. Our society is changing, the ethical landscape in our society is diverse, and palliative care has to define and realise its key values in a continuously evolving environment. Palliative care remains structurally underfinanced, and it still is not a full and equal part of our health care alongside prevention and curative treatment.
On a closing note, what do I believe I can offer the European Association for Palliative Care?
To begin with, there’s my broad bedside experience as I am still involved with palliative patients, on a daily basis. Additionally, there’s my knowledge of the governance of a non-profit organisation as I have been president of the Federation of Palliative Care Flanders for the past six years, Flanders being one of the three regions in Belgium. This might help to bridge to other associations, to the French- speaking part of Europe and to advocate for palliative care being so near to the European headquarters in Brussels. I also have many years of experience in training in palliative care, in developing guidelines, in involvement with the ongoing ethical debate about end-of-life care. In many ways, palliative care can be considered as the care of the future. What I therefore most of all hope to bring to the EAPC, is my passion for its further development.
It was during my training as a social worker in 1983 that I first connected with the idea of the hospice movement. It took a few more years to get fully involved with the concept and with the struggle to transform it into services supporting the dying, the bereaved and their families. When I had the chance to take over responsibility for building up the hospice movement in Vorarlberg, the westernmost part of Austria, I gladly took it. My master’s thesis in palliative care was ‘The Inter-Profession – Social Work in Palliative Care’. My doctoral thesis was about transitions from hospice palliative care units to home care services.
It was an honour to have the opportunity to be an active part of building up hospice and palliative care structures – both locally and nationally. These have included: managing hospice and palliative care services, developing professional standards (especially for social workers), developing projects such as ‘Hospice culture and palliative care in nursing homes’, and sharing my knowledge, e.g. on the topics of social work, volunteering and palliative care in nursing homes.
I also had the opportunity to work as a social worker in a hospice palliative care team for more than six years. I’m currently employed at Caritas Vorarlberg and our services comprise six regional hospice teams and a children’s hospice team, a palliative home care team and an inpatient hospice unit. I’m a board member of Hospice Austria, the national Hospice organisation for more than two decades, and I have been Vice President of Hospice Austria for many years. As such, I’ve been involved both with policy and with the provision of palliative care in Austria. I also co-chair the European Association for Palliative Care Task Force for Palliative Care Social Workers.
I’ve always been fascinated with the idea of a Europe growing together, learning from each other yet preserving the huge cultural variety and richness that we can pride ourselves on. There is so much to learn, so much to develop, to ensure that care for the dying and bereaved people in our societies is continually improving. If elected to the board, I guess that’s where my contribution to the EAPC would be. And, of course, I’m willing to share what I’ve learned in the past 25 years in the field of hospice and palliative care.
At a personal level, I’m grateful to what my family has taught me. Bringing up three children, together with my wife, stimulated my growth and although challenging at times was a great joy. Now that the children all have their own lives, there is more time for hobbies like biking, playing music, going on vacation, spending more time with my wife, but also working as a volunteer chairman of a home care team.
I am a psychologist and palliative care researcher, currently working in Prague, the Czech Republic. In 2014, after my PhD study at Lancaster University in the UK, I established the Center for Palliative Care, the first research and teaching organisation in the field of palliative care in our country. Currently, I still lead the Center and also work as Assistant Professor at the 3rd Faculty of Medicine at Charles University in Prague, where I teach palliative care and communication. I am also Research Secretary of the Czech Society of Palliative Medicine, husband of Blanka, father of three amazing girls and a retired musician and climber, waiting for his second chance.
I have been interested in palliative care since my university studies when I wrote both my bachelor and master’s theses on children’s understanding of death. Shortly after my graduation, I was lucky to get a PhD position at the International Observatory on End of Life Care at Lancaster University. My PhD work was focused on methodological aspects of comparing international development of palliative care. It was part of a large international project EUROIMPACT and I had the opportunity to work with a number of inspiring people, especially Professor Sheila Payne and Dr Sarah Brearley who were my supervisors and mentors. Later, I had the chance to learn about the amazing work done by many colleagues in the USA, where I was working as a Fulbright Scholar at Mount Sinai School of Medicine in New York, and through the life-changing educational experience of Palliative Care Education and Practice at Harvard Medical School.
There are many things in palliative care that I like and find exciting. I am very interested in communication – both in research and education. With my colleagues in the Center for Palliative Care, we established an innovative communication training programme for physicians, which has gained positive feedback and a high reputation from clinicians. In the past three years, a lot of my work was also around development of hospital palliative care, which was almost non-existent in the Czech Republic before. Together with the Avast Foundation, we started a revolutionary programme to support palliative care initiatives in hospitals and just a few weeks ago our Ministry of Health started a governmental scheme, which has been inspired by our pilot work. Through this experience, I had the chance to explore the complexity of factors that are involved in a change of healthcare systems. I learned the value of diplomacy, negotiation and change management, which are crucial for further development of palliative care – at least in countries that still struggle with access to palliative care services.
If elected, I would like to focus on the development of guidelines for education and service development.
It was more than twenty years ago, when I was working as a district nurse, that I really started to question the important contribution of palliative care for patients being cared for at home. I could clearly see different examples of both good and not so good quality care and this led me to question, what were the factors that contributed to this? I could see that timely, appropriate access to symptom management, a multidisciplinary team, comprised of both generalist and specialists, could really make a difference to the quality of life and death for people and their families. Yet the reality was that this did not always happen in practice. This curiosity or, as I would now teach student nurses, the importance of asking critical questions of our practice, became the focus for my Masters in Nursing degree, looking at the role of the district nurse in palliative care, and my first research paper published in 1999. This passion, to seek to enhance the quality of life and death for patients and their families, remains central to my interest and work in palliative care today.
I am a Professor of Nursing and Palliative Care and Head of School of Nursing at Ulster University in Northern Ireland. My work is comprised of four key elements; researcher; teacher, practitioner and leader. As a teacher and researcher, I am passionate about the importance of asking research questions, generating evidence and then implementing and using this robust evidence to develop practice and improve care. I have worked nationally both across the UK and Ireland. I currently lead a programme of research focusing on palliative care in chronic illness, management of clinical symptoms; decision-making at end of life; and a public health approach to palliative care.
What I would hope to contribute to EAPC if elected
If elected to the EAPC Board, I would hope to bring my experiences with strategic developments and international research and networking, which I have gained throughout my career and, most recently, from my time as the Head of Research for the All Ireland Institute of Hospice and Palliative Care (2011-2014). During this time, I led the establishment of the All Ireland Palliative Care Research Network (PCRN). This involved bringing researchers from across the island of Ireland and wider international collaborators together to undertake research informed by and informing practice, policy and education. One element of this included the establishment of priorities for palliative care research across the island of Ireland (view here). If elected, I would hope that such experiences would contribute towards developing and promoting palliative care in Europe.
Outside of work, I am kept busy as a wife and mum to two grown-up boys, my dog Archie, and trying to keep active by running (albeit slowly!).
In 1995, as an oncologist in Romania, I was usually treating patients with advanced cancer, seeing a lot of suffering and not even suspecting there was something that could be done. By chance, I happened to attend a conference on ‘palliative care’ (not that it meant anything to me). It was fantastic: Mary Baines running a workshop on pain made it all so clear as to how to manage this symptom and the session on ‘breaking bad news’ – wow … what a revelation!
Later in that year I started my work at Hospice Casa Sperantei in Brasov and my journey as a palliative care doctor began: learning, working, sharing, growing, educating, networking, engaging in policy changes in order to bring palliative care to patients and families in Romania and in the region. And, nevertheless, learning to be patient and perseverant when it comes to national policy changes.
Currently, I am Director of Education and National Development at Hospice Casa Sperantei. My clinical work as a palliative care doctor is in the outpatient clinic of the hospice. I am also an associate professor at the Brasov Medical Faculty where I lead the multidisciplinary palliative care master’s programme (the only such programme in Romania).
My special interest is in education in palliative care, particularly education, and in service development. I am leading a European Erasmus + project, EDUPALL, (where EAPC is one of the partners), that aims to develop and test a model palliative care curriculum in several universities based on the EAPC guidelines for undergraduate curriculum. The curriculum and trainers’ materials will be presented on 22 May at the preconference of the 16th EAPC World Congress in Berlin. We hope during this meeting to collect feedback from colleagues all over Europe before we release the final, free of charge version.
Another interest is how to increase research capacity in Eastern Europe so that palliative care professionals from this area can make visible their work. In the service development area, my present activities are linked with developing and piloting key palliative care interventions in the community and in oncology institutes.
If re-elected to the board, I would hope to bring to a specific EAPC task force the expertise that I have gained. It would be a pleasure to stand for a second term as an EAPC board member, to continue working with colleagues from all over Europe, and to contribute as much as possible to making the EAPC a reference point and support organisation for Eastern European countries.
As the mother of four children and the wife of a priest, God has blessed me with many opportunities and challenges to become, hopefully, a wiser person!
I’m 46 years old, the mother of two daughters, one of whom died in 2010 after 17 years with life-limiting and life-threatening conditions. It was the lack of paediatric palliative care for my own daughter that inspired me to set up the Norwegian Association for Children’s Palliative Care (FFB), the only organisation in the Nordic region lobbying for the development of children’s palliative care services.
This personal motivation, coupled with my training as a theologist and healthcare worker, has impelled me to push for children’s palliative care. Over the past ten years, I have completed many international courses in palliative care for children, including studying a module at master’s level in paediatric palliative medicine at Cardiff School of Medicine, Wales. I was responsible for the professional content of the first Norwegian conference on children’s palliative care in 2012, and for the Nordic Congress on Paediatric Palliative Care in 2015.
I hope that my considerable experience of committee work, both nationally and internationally, will enable me to play a useful role if elected to the EAPC board. Nationally, I have taken part in two Norwegian Directorate for Health reference groups: one to develop clinical national professional guidelines for palliative care for children (completed in 2016), and the other to prepare the official report on palliative care. I was a member of the Ministry of Labour and Social Affairs expert panel, which was tasked to identify and recommend improvements in the Norwegian Labour and Welfare Administration. In May 2016, the government appointed a committee for a Norwegian Official Report (NOU) on palliative care, where I participated as a representative. This work was submitted to the Minister of Health in December 2017.
From 2011 to 2016, I was a member of the ‘International Children’s Palliative Care Network – ICPCN’, which lobbies at global level for children’s rights to palliative care services. I also served as a board member of the Elisabeth Kübler Ross Foundation from 2013 to 2015 and continue to be a member of the Advisory Council. In November 2015 I contributed to the development of global guidelines for children’s right to spiritual care during palliative treatment. [http://www.fondazionemaruzza.org/en/religions-of-the-world-charter-for-childrens-palliative-care-update/]
A big part of my work is raising professional and public awareness of children’s palliative care: lecturing and teaching in universities, public debates, and contributing to national and international journals. I was editor of the Nordic Journal of Paediatric Palliative Care, edited the book ‘Affected – stories about anticipatory grief’ and the Norwegian website about anticipatory grief. I also translated into Norwegian and published the book, ‘The Purple Balloon’ by Chris Raschka.
While a great deal is known about adult palliative care, particularly for those with cancer, in Norway there is not enough knowledge about how children feel who have untreatable illnesses. The knowledge, solutions and models that paediatric palliative care offers continue to be my inspiration. If elected to the board, I would hope to contribute what I’ve learned and my skills as a communicator within a broad international network, combined with my passion to support the siblings and the relatives that are affected by the life-limiting illness of a child or young person.
I am delighted to have the opportunity to introduce myself to my EAPC colleagues. I was born on Christmas Day in 1957 in Lleida: the city that hosted the World Research Congress of the EAPC in 2014.
I’m an internal medicine specialist, and in 1986 my mentor, Dr Francesc Ferrer Ruscalleda, suggested that I should get information about hospices. I shall be eternally indebted to Dame Cicely Saunders and Dr Mary Baines, among others, from St Christopher’s Hospice in London, who opened the doors of a new world to me. The impression was so strong and engaging that I decided that when I returned to Spain I would contribute by disseminating the experiences I had gained in London. During my stay in London I had met Dr Xavier Gómez-Batiste, a colleague and friend with whom I had the privilege to start developing palliative care in Catalonia and Spain. Fortunately, and very quickly, other Spanish colleagues joined this pioneering party. In the past 30 years, I have worked in many hospitals, and in different posts, always as a full-time palliative care physician. I completed my PhD dissertation in 1996 and did a Master’s in bioethics in 1998.
My professional interests are related to research, teaching and organisation, but always clinical practice-based. As a researcher, I’m interested in cancer pain, and also in ethics, specifically in palliative sedation, having participated, among other contributions, in the EAPC Task Force on Euthanasia and Physician-assisted Suicide. More recently, I have become interested in the ‘Wish to Hasten Death‘. Linked to my research interests, I was the first Editor-in-Chief of the first journal in Spanish devoted to palliative care: Medicina Paliativa, and I am a member of the editorial boards of Palliative Medicine and the BMJ Support & Palliative Care.
Currently, I am semi-retired but still working as Head of the Service of Support and Palliative Care at the Catalan Institute of Onclogy, Girona branch, and also as Director of the ‘WeCare End of Life Care Chair’ at the ‘Universitat Internacional de Catalunya’. Recently, I had the opportunity to work on closer collaboration between palliative care and haematology.
In 2015, I had the privilege to be elected as a member of the European Association for Palliative Care (EAPC) Board of Directors. The work in these past four years has been very interesting and, from my point of view, fruitful. I had the opportunity to work with other board colleagues in the membership subgroup preparing our association for further and challenging innovations.
If I am fortunate enough to be re-elected to the EAPC board for the next term, 2019-23, I would hope to make a positive contribution in building bridges between palliative care and haematology, and continue to collaborate in upgrading EAPC.
In 2015, the Italian Association for Palliative Care (La Società Italiana di Cure Palliative – SICP) and the Federation of Non-profit Palliative Care Organizations (Federazione Cure Palliative Onlus – FCP) nominated me as a candidate for the 2015 elections to the board of the European Association for Palliative Care (EAPC). I was honoured to be nominated and would be delighted to stand for a second term of four years.
When I was a 23-year-old medical student, I had my first volunteering experience in Africa, working for four months in the Zimbabwe National Leprosy programme. I feel that this helped to set me on a journey towards palliative care and the non-profit sector. In 1990, I began my professional career as palliative home care physician for a non-profit association (Associazione Nazionale Tumori). In 2001, I founded one of the first hospices in Italy – soon to become the largest in the country – and served as the medical director for 10 years.
Contributing at national, regional and local levels
From 2007 to 2010, SICP and FCP were part of the fruitful team effort in achieving the passing of the Italian Law 38/2010, which improved the scope and quality of palliative care in Italy and, as vice president of SICP, I was part of this great achievement. In the mandate I was in SICP the referring to the Advance Care Planning. I am not sure what this means; do you mean: I was the lead person in SICP on Advance Care Planning.
As vice president of SICP from 2010 to 2013, I was heavily involved in its education task force. I coordinated the working groups for core university curricula and the core competencies of the professionals involved in palliative care (physicians, nurses, physiotherapists, social workers, psychologists and general practitioners).
From 2007 to 2018, in my capacity as director of the Metropolitan Oncology and Palliative Care Unit USD and head of the Palliative Care Network for the Local Health Authority of Bologna, I was the Head of led the regional Innovation Project: ‘Development of Palliative Care Network’ focusing on early palliative care. This led to the integration of public and non-profit organisations and the creation of 13 outpatient early palliative care clinics (palliative home care and hospice care had already been set up by non-profit organisations).
My current role
Since 2018, I have been Director of the Palliative Care Unit Network, in a local health authority (Bologna), with about 900,000 inhabitants (24.1 per cent over 65 and 7.1 per cent non-Italian), 50 communes, nine hospitals (with 1,889 beds) and three hospices (58 beds). Our team of multiprofessionals, who work in public and non-profit organisations, are also consultants at the University Hospital, Policlinico S.Orsola Malpighi, (1,535 beds).
I recently contributed to the drafting of the basic text of Italian Law 219/2107 on Advance Care Planning, debated in Parliament and approved in December 2017.
What I would hope to bring to the EAPC board if re-elected
Utilising my professional and personal experience, I believe that I could continue to make a valuable contribution to EAPC, particularly in early palliative care, professional training, integration of non-profit organisations and public facilities, ethical issues, and innovation in palliative care.
My goal would be to promote the development of early palliative care in Europe (awareness, organisations, and education), so that people can enjoy the demonstrated benefits of palliative care even in the early stages of the disease and that, in the final stages of life, they receive real and effective palliative care.
I strongly believe that differences are an asset, that the compared experiences of different countries – exchanged, examined and employed in unity – represent the rich diversity of EAPC members. Enabling a single, shared voice in Europe makes EAPC a driving force for the development and improvement of palliative care.