Characteristics of episodic breathlessness

Dr Steffen T Simon, Department of Palliative Medicine, University Hospital Cologne, Germany, explains the background to the longer article selected as ‘Editor’s Choice’ in the May issue of Palliative Medicine.

Dr Steffen Simon

Dr Steffen Simon

Breathlessness is a frequent and burdensome symptom for patients with life-limiting diseases. On average, half of patients with cancer (non curable) complain about breathlessness. Patients with advanced COPD (chronic obstructive pulmonary disease) or chronic heart failure experience breathlessness even more often, between 70-90% of them. Breathless patients mainly report two different expressions of breathlessness: continuous (to be breathless all the time) and episodic breathlessness. Episodes of breathlessness can occur alone or on top of continuous breathlessness and are described by patients as: “A horrible experience: dreadful, suffocating, it’s life-threatening,” or “You think you’re gonna die.” Episodic breathlessness is often associated with anxiety or panic.

However, episodic breathlessness has been rarely studied and only a few papers exist that describe and explore this type of breathlessness. To develop and evaluate management strategies in order to improve quality of life of breathless patients, we need to know more about this symptom. We need to know how frequently patients experience these episodes, what is the mean and range intensity at peak, how long do these episodes last, do they occur during the day, or at night, or both? Are there similarities in comparison to the concept of breakthrough pain? What are the differences? We need to know this because there might be options to use the same management strategies for episodic breathlessness as for breakthrough pain.

Therefore, our study group used a cohort study in Germany to ask patients about the characteristics of their episodes of breathlessness: frequency, duration, intensity, time of occurrence and others. Eighty-two patients with COPD or lung cancer described a total of 592 breathlessness episodes over a maximum period of 12 months.

Based on these patient reports we can now say that: the majority of episodes of breathlessness are only of short duration (median five minutes; 72% less than 10 minutes), often occur daily and are severe (mean breathlessness intensity 6.2/10). This result has an impact on the further development of management strategies: first, we need to increase our efforts in the development of non-pharmacological treatment options as the vast majority is not suitable for pharmacological interventions; (opioids such as fentanyl: time of onset is longer than the duration of episodes). Second, we need to explore which characteristics are most relevant for patients in order to know which characteristic we need to change (duration, intensity or frequency?). Third, we need to explore ways to prevent episodes of breathlessness – by non-pharmacological interventions (for example, pacing, walking aids and mobility devices, training in panic reduction, or others) or pharmacological interventions (for example, opioids, benzodiazepines, anti depression medication such as SSRI, or others).

Patients with episodic breathlessness need our help and support to better cope with this burdensome symptom and we need more studies to develop and evaluate the most beneficial and effective management strategies.

May Pall Med coverDownload a free copy of the full article…
This post relates to a longer article, Characteristics of episodic breathlessness as reported by patients with advanced chronic obstructive pulmonary disease and lung cancer: Results of a descriptive cohort study, by Weingärtner V, Scheve C, Gerdes V, Schwarz-Eywill M, Prenzel R, Otremba B, Mühlenbrock J, Bausewein C, Higginson IJ, Voltz R, Herich L, Simon ST; on behalf of PAALiativ; published in Palliative Medicine, 29(5):420-428, 2015. Published online before print January 29, 2015, doi: 10.1177/0269216314563428.  EAPC members and registered users of the EAPC website can download a free copy of this article and other ‘Editor’s choice’ papers from the EAPC website. (If you need to register or login to download this paper please follow the instructions in the top right-hand corner of EAPC home page and scroll down to the article). Click here to view other EAPC-originated papers.

Posted in EAPC-LINKED JOURNALS, Medicine, Palliative Medicine: Editor's Choice, RESEARCH, SYMPTOM CONTROL | Tagged | 2 Comments

Opening doors to collaboration with scientists from across the world: The 14th World Congress of the European Association for Palliative Care

PhD fellow Mie Nordly, MSc, Palliative Research Unit 7621 in Copenhagen University Hospital, Denmark. Mie was one of many student volunteers who worked tirelessly at the EAPC World Congress last week; here she gives a young researcher’s perspective.

Mie Nordly

Mie Nordly

It was my third world congress organised by the EAPC – this year on my home court in Copenhagen. As a PhD fellow supervised by the Chair of the Organising Committee, Professor Per Sjøgren, being a volunteer at the congress seemed an obvious thing to do. Nearly 2,800 people participated from all over the world, which was a new record.

Prof Per Sjøgren pays tribute to the volunteers who worked throughout the  congress

Professor Per Sjøgren pays tribute to the volunteers who worked throughout the congress

Being a volunteer also meant that I had a place in the same lecture hall during the entire congress, except when there was a plenary session going on. This gave me the opportunity to listen to speakers’ subjects that were a little out of what I consider to be ‘my area’, but nevertheless it was exciting to know what is going on in the wider palliative field. The ’Meet the expert’ session with Sunil Raj and Julia Riley especially gave hope for implementing electronic systems for assessing future palliative patients and research.

I found some time to go to plenary sessions, one of them on Saturday afternoon. Here I heard Marie Fallon’s lecture: ‘The Role of Systemic Inflammation in the Pathophysiology of Symptoms of Advanced Cancer: State of the Science and Clinical Implications’. I had heard her talk about this subject before at the European Palliative Care Research Centre (PRC) and EAPC Research Network meeting in Milan in 2013 and found it very interesting. Working on a project with the effects of opioids on the immune and endocrine system, I have learned a lot from this lecture that I will be able to use in our future research.

Professor Mogens Grønvold speaking at a plenary session at the 14th EAPC World Congress

Professor Mogens Grønvold speaking at a plenary session at the 14th EAPC World Congress

Another interesting plenary session was by Mogens Grønvold about ‘The Danish Palliative Care Trial (DanPaCT), a Randomised Trial of Early Palliative Care in Cancer: Results of the Primary Analysis’, which did not show any significant effect of early specialised palliative care such as the Temel and other American studies have demonstrated. It is possible to draw parallels from DanPaCT to my own PhD project which is based on the DOMUS trial: ‘A randomized clinical trial of accelerated transition from oncological treatment to specialized palliative care at home‘ and it will be exciting to see if our study show the same outcomes.

Overall, I find EAPC conferences important to attend especially as a young researcher. It gives the opportunity to put faces to the names of authors whose articles you read; moreover you get the opportunity to exchange experience with other researchers, and the conference opens doors to collaboration with scientists from all over the world in the future.

'Meet the expert' session: Dr Benjamin Ewert (centre) with delegates  at the session

‘Meet the expert’ session: Dr Benjamin Ewert (centre) with delegates at the session

The ‘Meet the expert’ sessions are highly recommended for new/young researchers as these sessions give more time for questions and discussions in a smaller forum.

Diary dates…

Posted in 14th World Congress Copenhagen, EAPC ACTIVITIES, EAPC Congresses | Tagged | 3 Comments

New beginnings… All change at the EAPC

This year’s 14th World Congress of the European Association for Palliative Care held last week in Copenhagen, was probably one of the biggest yet with around 2,800 delegates from 80 countries of the world. Praise to the hosts, led by Professor Per Sjøgren, for such an excellent choice of venue and the Scientific Committee, led by Professor Irene Higginson and Professor Carlo Leget, for a stimulating programme. One thousand two hundred abstracts were submitted this year – the highest-ever number!

Held in the beautiful surroundings of the Bella Center the atmosphere from the first moment was one of fellowship and warmth, passion for new knowledge and reinforcement of good practice. We shall be publishing posts in the coming weeks that will comment on the quality and impact of the scientific content of the programme but for now we want to bring you some of the people behind the scene: a new beginning and two poignant farewells.

Front row: (L-R): Danila Valenti, Christoph Ostgathe, Phil Larkin, Irene Murphy, Mai-Britt Guldin. 2nd row: Josep Porta Sales, Tiina Saarto. Third row: David Oliver, Anne de la Tour, Catherine Walshe, Carlo Leget

Front row: (L-R): Danila Valenti, Christoph Ostgathe, Philip Larkin, Irene Murphy, Mai-Britt Guldin. 2nd row: Josep Porta Sales, Tiina Saarto. Third row: David Oliver, Anne de la Tour, Catherine Walshe, Carlo Leget

EAPC welcomes new President and Board of Directors.
Following elections on Saturday 9 May, a new EAPC Board of Directors was formally constituted. Our new president is Professor Philip Larkin, Joint Chair, Professor of Clinical Nursing (Palliative Care) at University College Dublin School of Nursing Midwifery and Health Systems, and Our Lady’s Hospice & Care Services, Dublin, Ireland. In his welcoming speech, Philip thanked the 2011-2015 Board members for their contribution and looked forward to working with the new Board. The new Board includes:

  • President: Professor Philip Larkin, Ireland
  • Dr Anne de la Tour, France
  • Dr Mai-Britt Guldin, Denmark
  • Professor Carlo Leget, The Netherlands
  • Assistant Professor Daniela Mosoiu, Romania
  • Irene Murphy, Ireland
  • Dr David Oliver, UK
  • Dr Christoph Ostgathe, Germany
  • Dr Josep Porta Sales, Spain
  • Professor Tiina Saarto, Finland
  • Dr Catherine Walshe, UK
  • Dr Danila Valenti, Italy
  • Dr Paul Vanden Berghe, Belgium
Closing ceremony on Sunday: Esther Schmidlin, on behalf of the Board, thanks Prof Sheila Payne (left) for the enormous contribution she has made to the EAPC and to palliative care in general

Closing ceremony on Sunday: Esther Schmidlin, on behalf of the Board, thanks Prof Sheila Payne (left) for the enormous contribution she has made to the EAPC and to palliative care in general

Farewell to Professor Sheila Payne
After eight years, first as a member of the Board of Directors and since 2011 as its president, Sheila Payne has worked unstintingly, not only in Europe but globally too to represent the EAPC. Now her term of office has come to an end as she hands over to a new president.


Prof Sheila Payne presents Heidi with a special book of messages and memories from colleagues and friends across the world honouring her work

Prof Sheila Payne presents Heidi with a special book of messages and memories from colleagues and friends across the world honouring her work

Farewell to Heidi Blumhuber
In a special presentation on Friday, Sheila Payne thanked Heidi for the crucial part she has played in driving the EAPC to the position it holds today.

Heidi with her husband, Dr Franco De Conno, Honorary Director of the EAPC

Heidi with her husband, Dr Franco De Conno, Honorary Director of the EAPC

Heidi has now stepped down after 25 years as CEO of the EAPC, handing over to Dr Julie Ling.



Behind the scenes…

Left to right: Marlene Sandvad, Prof Per Sjøgren and Fiona Wong

Left to right: Marlene Sandvad, Prof Per Sjøgren and Fiona Wong

Behind every successful event is an army of backroom people: EAPC head office staff and committees, the Interplan team and many others. Seen pictured with Professor Per Sjøgren are Fiona Wong and Marlene Sandvad, who coordinated the Scientific and Organising Committees.


Volunteers at the congress in their distinctive green shirts are personally thanked by Per Sjøgren

Volunteers at the congress in their distinctive green shirts are personally thanked by Per Sjøgren

As so often in palliative care, volunteers also contributed hugely to the success of the 14th EAPC World Congress.

  • To find out more…
    For more pictures from the 14th EAPC World Congress and a special message from the organisers, please visit the congress website
  • For more information on the 2015-2019 Board of Directors visit the EAPC website.
  • We shall be publishing more posts from congress contributors, delegates and volunteers in the coming weeks. If you missed previously published posts from congress contributors please click here.

Coming up…
5th International Seminar of the European Palliative Care Research Centre (PRC) and European Association for Palliative Care Research Network (EAPC RN), Leeds, UK, 15-16 October 2015. Several slots  available for oral and poster presentations. Deadline for abstract submission and early bird registration: 31 July. Visit the congress website to download the programme and register.

9th World Research Congress of the European Association for Palliative Care, 9-11 June 2016. Call for abstracts will open soon. Save the date and check website for updates.

Posted in 14th World Congress Copenhagen, 2015 EAPC Board Elections, EAPC ACTIVITIES, EAPC Board Members, EAPC Congresses | Tagged | 2 Comments

Advance care planning in end of life care: The experience of trained volunteers

Penny Jones is the Director of Care Services at St Catherine’s Hospice, Crawley, UK. At the time of taking part in this study she was the Director of Care Services at Greenwich & Bexley Community Hospice. Here, she explains the background to a longer article published in the May/June edition of the European Journal of Palliative Care.

Penny Jones

Penny Jones

Advance care planning is one method of improving the care of people who are facing life-limiting illnesses to help them live and die in the place and manner of their choosing by expressing their wishes, needs and preferences.

The Advance Care Planning Project at Greenwich & Bexley Community Hospice in southeast London was conceived to recruit and train volunteers as advance care planning facilitators, to work alongside our hospice teams. The aim of the project was to reach and enable people with a life-limiting illness living in Greenwich to either produce an advance care plan document or enable them to have time to consider what their wishes and concerns were, empowering them to have discussions with their family and friends.

In order to drive the project forward we sought grant funding and were successful in our bid to Comic Relief, a UK-based charitable organisation that raises money for projects in the UK and abroad.

In a change from our normal approach to recruiting volunteers, we decided to actively place adverts in the local press to seek volunteers specifically for the project from our local community, who were interested particularly in working with people who were living with a life-limiting illnesses.

As highlighted in the published article, we were very keen to help people write down their wishes or at least have a conversation about their wishes. Having reviewed the literature, there is significant evidence to show that if people have an advance care plan there is a decrease in hospitalisation and an increase of hospice and palliative care support at the end of life.

An important decision we had to take as part of this project was how we should evaluate and demonstrate its effectiveness. As volunteers play a very large part in supporting service delivery in hospices, we felt it important to evaluate the impact of their role as volunteers and the training we provided. We later discovered, as part of the literature search for the published article, that to date there is no other empirical literature about trained volunteers taking on this role of advance care plan facilitators.

Once trained, the volunteers were to receive referrals from teams based at the hospice, as well as from external sources, such as general practitioners. As with most projects, we got off to a slow start with few referrals initially. In order to keep our volunteers’ skills and confidence buoyant, we decided to ask them to work with people attending our Day Hospice. This had a twofold result in not only providing the volunteers an opportunity to develop their skills in listening and communicating, but also resulted in most of the people attending Day Hospice working on their own advance care plans and having open discussions about their wishes with the Day Hospice Team and also with family and friends. It also saw people in Day Hospice, who had been reluctant to work with the volunteers, being encouraged by other Day Hospice attendees to “give it a go”!

The feedback we have had from people working with the volunteer advance care planning facilitators has been overwhelmingly positive. We have received comments such as: “working with them gave me confidence to open up discussions with my family and friends” and “now I have told my family what my wishes are, I can get on with other things!”

EJPC May coverRead the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘Advance care planning in a UK hospice: the experiences of trained volunteers’ by Penny Jones, Kate Heaps, Carla Rattigan and Di Marks-Maran, published in the May/June 2015 issue of the European Journal of Palliative Care (vol. 22.3). If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

The publishers are offering 50% discount on subscriptions until 31 May 2015. Take advantage of this exclusive offer and save on your subscription to the European Journal of Palliative Care (EJPC). In order to redeem this exclusive offer please enter discount code EJPC50 (for personal subscriptions) or EJPC50i (for institutional subscriptions) online or email us  and one of the team will set up your subscription for you.

Links and resources


Posted in EAPC-LINKED JOURNALS, European Journal of Palliative Care, VOLUNTEERING IN PALLIATIVE CARE | Tagged , | Leave a comment

Dr Kathleen McLoughlin from Ireland wins 2015 EAPC Early Researcher Award

Today in Copenhagen at the 14th EAPC World Congress, Dr Kathleen McLoughlin received the 2015 European Association for Palliative Care Early Researcher Award.

Dr Kathleen McLoughlin, All Ireland Institute of Hospice and Palliative Care/Irish Cancer Society Research Fellow, Department of Psychology, Maynooth University, Compassionate Communities Project Co-ordinator, Milford Care Centre, Ireland, reflects on her research career in Palliative and End of Life Care.

Dr Kathleen McLoughlin with her award

Dr Kathleen McLoughlin with her award

It all began back in 2001, when each Health Board area was required to conduct a palliative care needs assessment. I was working as Researcher for Mental Health at the time, focused on one day entering Clinical Psychology Training. I was asked to assist with the local needs assessment and I vividly recall sitting googling definitions of ‘palliative care’. Little did I know that ‘palliative care’ would become a daily feature of my search histories 14 years later!

During the needs assessment I met people receiving palliative care services, who wished that they had been referred and/or accepted referral much earlier. They clearly appreciated the health promoting benefits of engagement. I also met people who described how they asked their homecare nurse to park their car around the corner, highlighting the stigma associated with receiving palliative care. Others described how it wasn’t palliative care per se that evoked fear, but what it represented for them. As Davis (1995) describes, this is a different type of referral “the individual’s passage through one set of hopes and expectations to another.”

Kathleen McLoughlin with presentation co-chairs: Carlo Leget (right) and Ole Råkjaer

Kathleen McLoughlin with presentation co-chairs: Carlo Leget (left) and Ole Råkjaer

The concepts of fear, stigma and attitude are of obvious relevance to the field of psychology and were issues I was familiar with in mental health. I recognised quite quickly that this was a relatively new area for research in palliative care and whilst theoretical solutions had been proposed by Professor Kellehear in his book ‘Health Promoting Palliative Care’ (1999), we were not familiar with Allan’s work when we made the recommendation that a health promoting approach to palliative care should be adopted.

It was this recommendation that fuelled my application for funding to the Irish Hospice Foundation and the Health Research Board to conduct a PhD at Maynooth University under the supervision of Dr Sinead McGilloway. The multi-phase mixed method study commenced formally in 2006, running for six years on a part-time basis. The findings of which:

  • Contribute to the understanding of the ethical complexities associated with this work.
  • Include the development of a new tool to assess healthcare professionals’ attitudes toward palliative care (HPAQ).
  • Offer a comprehensive 8-variable framework to describe healthcare professional attitudes toward palliative care.
  • Add two new education programmes and associated methods of evaluation to enable healthcare professionals and people living with cancer, to critically reflect on their attitude toward palliative care.
  • Demonstrate how repertory grid technique could serve as a useful research methodology/clinical technique for use in palliative care.

Most importantly, however, the research served as a catalyst for the development of Health Promoting Palliative Care and the first demonstration model for Compassionate Communities on the island of Ireland, developed in association with my colleagues at Milford Care Centre. To my surprise, I was recently named 2014 Commercial Media Group Irish Healthcare Person of the Year for my work in the field of Palliative and End of Life Care. I also now hold the 2014 All Ireland Institute of Hospice and Palliative Care/Irish Cancer Society Research Fellowship to evaluate the effectiveness of the Good Neighbour Partnership, a volunteer-led model for social and practical support for people living at home, with advanced illness.

It has been a pleasure to attend the 14th World Congress of the European Association for Palliative Care, to collect the Early Researcher Award and share my current and future research plans with those who attended today. I hope that this will be a catalyst for further collaboration and research, particularly in the field of Public Health and Palliative Care.

Googling palliative care might just have been one of the best things I ever did!

McLoughlin, K. (2012). Identifying and changing attitudes toward palliative care: an exploratory study. PhD thesis, National University of Ireland Maynooth. 

McLoughlin, K. and McGilloway, S. (2012). Unsettling assumptions around death, dying and palliative care. Chapter in Fook, J. and Gardener, F. Using critical reflection: Scientific applications in health and social care settings.

McLoughlin, K. (2010). Dying to talk: Unsettling assumptions toward research with patients at the end of life. Palliative and Supportive Care, 8 (3) p 371-375.

More about the EAPC Early Researcher Award
The Early Researcher Award is presented annually by the EAPC and is designed to recognise the work of young (novice) scientists and clinicians in the field of palliative care who have recently made, or are currently making, an outstanding contribution to research. It aims to highlight their personal career development and their potential for the future.

We shall be publishing more posts from this year’s Early Researcher Award prizewinners on the EAPC Blog – you can also view posts from former prizewinners here

Look out for announcements about the 2016 Early Researcher Award in the autumn.


Posted in 14th World Congress Copenhagen, EAPC ACTIVITIES, EAPC Congresses, EAPC Early Researcher Awards | Tagged , | Leave a comment

Leadership starts here. And with us

Louise Baker and Gerrit Frerich celebrate the graduation of the first students of the European Palliative Care Academy and invite you to meet the team at the 14th EAPC World Congress in Copenhagen this week.

Professor Sheila Payne speaking at the graduation ceremony

Professor Sheila Payne speaking at the graduation ceremony

“The EAPC needs you. Stand up. Get involved!”  This was the key message that Professor Sheila Payne, President of the European Association for Palliative Care and a member of the EUPCA Advisory Board, gave the 20 new graduates of the European Palliative Care Academy (EUPCA) on Saturday night in Brasov.

In the presence of distinguished guests and members of the Advisory Board, including Mary Callaway from the International Association for Hospice and Palliative Care (IAHPC) and Dr Frank D Ferris, executive director of palliative medicine, research and education for the OhioHealth system, the EUPCA team proudly celebrated the achievements and successes of their first 20 students in the home town of Hospice Casa Sperantei, Romania’s Centre of Excellence for Palliative Care. The 20 graduates, from 14 European countries with seven different professional backgrounds, received their certificates of achievement for completing the first-ever Academy course from members of the steering committee.

The European Palliative Care Academy is a joint project of the Robert Bosch Stiftung and the University Hospital Cologne, Germany; the Nicolaus Copernicus University Torun, Poland; King’s College London, UK, and Hospice Casa Sperantei, Brasov, Romania, in collaboration with the EAPC. The course is made up of six modules –Project Management, Personal Development, Team Work, Research and Advocacy – and includes a personal project, as well as an observation week at a European Institution of the participant’s choice. The modules are taught in four face-to-face teaching weeks, one at each of the partner institutions. As the final module, Advocacy, was taught in Brasov, it seemed only right that this should be the location for the graduation ceremony.

Graduate students of the European Palliative Care Academy, faculty members and guests

Graduate students of the European Palliative Care Academy, faculty members and guests

“Not only have we been able to highlight the achievements of all our graduates this evening, but we have actively demonstrated that palliative care can really benefit from an international network,” remarked Assistant Professor Dr Daniela Mosoiu, Education and National Development Director at Hospice Casa Sperantei and a member of the EUPCA Steering Committee.

With the new intake of students in September 2015, EUPCA aims to expand and build upon that network. EUPCA will be represented at this week’s EAPC World Congress in Copenhagen with a stand and poster. In the ‘Meet the Experts’ session on Saturday 9 May (08.00 in meeting room 20) participants will also have the chance to meet some of the members of the EUPCA steering committee and teaching staff personally.

Now, the 20 graduates will be returning to their respective countries to continue advancing palliative care throughout Europe by applying what they have learnt throughout the course. The personal projects also ensure that the course is already having a direct impact on palliative care in at least 14 European countries. And the projects are just as varied as the students. From setting up an out-of-hours telephone service in Athens to developing a strategic bereavement plan for a Dublin hospice, or initiating an Advisory Group for Pediatric Hospices in Central Europe, the projects certainly demonstrate that the graduates really are on the way to becoming the palliative care leaders of tomorrow.

As Niamh Finucane, a social worker from Dublin, Ireland and EUPCA graduate, stated during the ceremony, “Leadership starts here. And with us,” proving that Sheila Payne’s message has already been received loud and clear.

Find out more…

  • Click here for more information on the next course. Deadline for applications: 31 May 2015.
  • Join us at the European Palliative Care Academy stand at the congress.
  • Come along to our ‘Meet the Experts’ session on Saturday 9 May (08.00, meeting room 20).
Posted in 14th World Congress Copenhagen, EDUCATION & TRAINING | Tagged | Leave a comment

EAPC Board elections: Introducing our candidates – Carlo Leget

This series introduces candidates for the European Association for Palliative Care Board of Directors who will be standing for election (or in some cases re-election) in May 2015. We hope the blog posts provide an opportunity for candidates to explain more about themselves and how they might contribute to the EAPC and the palliative care community more generally. 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.  

The series continues today with Professor Carlo Leget, Professor of Care Ethics, University of Humanistic Studies in Utrecht, The Netherlands.

Professor Carlo Leget

Professor Carlo Leget

Watching someone of your own age die is always an experience with great impact. When you are at the beginning of your thirties it can be an experience that you will never forget. He was one of the first patients I followed in my early research and everything in his life seemed to be the opposite of mine. A life full of problems and quarrels: early divorce, young children, and misunderstandings all around. His father had tried to be nice, bringing chocolates. But he interpreted it as another stupidity of his old man. What can you do with chocolates when your gastric cancer has made a mess of you? The big surprise came at his funeral. Suddenly a tape with his voice filled the crematorium. Consoling, uplifting and pointing out what is really important in life.

Stories of patients like this made me realise that in palliative care in my country there was very little guidance on dealing with the big questions and issues. It also taught me that the inner life of patients could be much richer and more creative than we might think. For 17 years now, I have been working on developing what is called ‘the spiritual dimension of palliative care’. First, in my own country by designing a practical model for patients, families and healthcare givers, subsequently by writing a national guideline on spiritual care for physicians and nurses; and since 2010 as co-founder and co-chair of the EAPC Taskforce on Spiritual Care.

As a professor of care ethics at the University of Humanistic Studies in Utrecht, The Netherlands, I follow many end-of-life discussions in my country and worldwide. And as an EAPC Board member and vice-president since 2011, I have come to appreciate how much ethics and spirituality are defined by cultural backgrounds. Understanding the great variety of the many cultures in Europe is a great challenge to the EAPC, and also one of the great opportunities that this international network offers. And that is precisely what motivates me to contribute for another four years – building bridges between cultures and making sure that North, South, East and West are equally represented and served.

The EAPC is currently going through a great transition as an organisation. With my experience, I hope to contribute to continuity for an association that enables patients and families in all countries not only to die peacefully, but also to strengthen their inner life when faced with life-threatening disease – and teach us about what is really important in life.

More about the EAPC Board elections…
EAPC Board elections take place on Saturday 9 May from 10.00 am until 3.00 pm in room 171 of the Congress Center. If you are a member of the EAPC and eligible to vote please do go along and place your vote. Members can find more information on voting procedures and all the candidates standing for election on the EAPC website. (Members will need to login to access these pages). We are also publishing candidates’ posts on the EAPC Blog in the run-up to the elections. Click here to read previous posts from other candidates.

EAPC Congress update…
If you’re joining us at the14th World Congress of the European Association for Palliative Care – Copenhagen, Denmark, 8-10 May, you can now download the final programme and the book of abstracts.

Carlo Leget and Christian Busch will be leading a Meet the Expert session on ‘Improving Spiritual Care in Clinical Practice’ on Sunday 10 May at 08.00 in Room A3 at the Congress.

Follow all the Congress events on Twitter @EAPCOnlus the official Congress hashtag is #eapc2015

Posted in 2015 EAPC Board Elections, EAPC ACTIVITIES, EAPC Board Members | Tagged , | Leave a comment