Reflections on the 9th World Research Congress of the European Association for Palliative Care, held at University College Dublin, Ireland, on 9-11 June 2016.
Niamh Clowry, Programme Manager, Irish Association for Palliative Care.
The Irish Association for Palliative Care (IAPC) hosted the 9th World Research Congress of the European Association for Palliative Care at which 47 countries were represented, with presenters from 11 different countries.
In excess of 1,200 delegates attended the Congress. Delegates from countries all over the world attended to showcase their latest research into vital areas of palliative care. Given the high volume of abstracts submitted; a high attendance was expected, although the final numbers exceeded all expectations. The Congress venue of University College Dublin was more than able to cope with such high numbers. The atmosphere from day one was terrific and as always the EAPC brought the opportunity to meet with colleagues from around the world and for the Irish participants it afforded them a large audience to showcase their research to.
Dr Paul Gregan, Consultant in Palliative Medicine, Blackrock Hospice and member of the IAPC Local Organizing Committee stated at the beginning of the Congress, “In order to provide the best possible support to patients and indeed to families we need to establish what works best – and this can only be done through well structured research. Research in this field can be more challenging than in other areas of medicine, as our patients are frail and often extremely ill – and we are very cautious about increasing the burden on them in any way. My colleagues and I are very pleased that we are able to host this conference here in Dublin”.
Dr Gregan continued, “The conference most importantly also provides a forum for researchers to meet and discuss new ways of delivering and measuring the outcome of palliative care to people at the end of life and is a unique opportunity to network and generate new research directions.”
The Scientific Programme addressed a whole range of issues in palliative care, and topics including themed sessions on Information technology; Mortality follow back surveys in end of life care research; advance care planning; optimum methodology in cancer pain studies; Implementation of guidelines. Five plenary sessions were also presented on Palliative care services in the US system; Cancer pain management; Early introduction of palliative care in Cancer; Building palliative care from scratch in the Czech republic; Management of delirium in palliative care and Management of depression in palliative care. In addition, there were 350 posters on view over the course of the Congress.
The Irish were well represented at the Congress, with forty-one poster presentations and a number of Irish participants providing oral presentations over the course of the three day scientific programme. These oral presentations included:
The main themes in the responses suggest that the systematic development of bereavement care is a shared goal. Characteristic commonalities in the bereavement experience across countries were expressed and cultural uniqueness in grief might be less than believed. These findings indicate a need for further development of, and shared recommendations for bereavement care.
Speaking at the Congress Irene noted that, “Palliative care supports people in the context of their family. The family is the unit of care. New issues emerge for a family at a time of serious illness, often leading to a chaotic environment for all involved. As well as dealing with and explaining the physical symptoms of the illness we also facilitate communication around the issues in the changed circumstances. We advise on strategies for coping with the uncertainties and the new roles which can emerge within the family group as they deal with the new situation, while also getting on with the business of daily life”.
Full details of all the Congress Abstracts are available online https://pmj.sagepub.com/content/30/6/NP1.full.pdf+html
The Congress was opened by Professor Russell Portenoy, who delivered this year’s Vittorio Ventafridda Lecture: Palliative Care Services in the US Health Care System – what is the evidence? He went through the last 15 years of randomised controlled trials within the field of palliative care services in the US and concluded that more research is badly needed, “Evaluating specialist palliative care is a very complex endeavor in any country. Many issues emerge, including the most meaningful outcomes for patients, the sensitivity of the methods used for measuring outcomes, and the challenge of measuring specific outcomes from the specific intervention. Hospice is by far the largest system providing specialist palliative care in the United States and its processes vary greatly from other models, including hospital-based services. Community based palliative care is just now emerging in a variety of models. Overall our data shows that the growth of palliative care is positive for the US healthcare system, however, we need much more research in this area”. Prof Portenoy also provided a very succinct definition for Palliative Care in the US as, “A multi-professional therapeutic approach for all populations with life-limiting illnesses, the goal of which is to prevent and manage the suffering and illness burden of both patient and family from the time of diagnosis onward”.
Dr Roma Maguire, Professor of Cancer Care at the University of Surrey spoke about ‘Remote Patient Monitoring in the delivery of Supportive Care. She said, “Remote patient monitoring in the home care setting allows patient symptoms to be identified, facilitating early intervention. The Advanced Symptom Management System (ASyMS) is a remote monitoring system, which is designed to assess and manage the symptoms of cancer and the associated treatments. This facilitates tailored management of symptoms in the home care setting and lets us know when further intervention is necessary”.
‘Meet the Experts’ sessions were based on protocol presentations, which provided researchers with an opportunity to obtain feedback and discuss the methodology of their studies up front.
‘Early Researcher Awards’ are presented annually by the European Association for Palliative Care and this years winners were as follows:
The Post Doctorate Level Award
The winner of this award was Dr Bridget Candy, Senior Research Fellow at the Marie Curie Palliative Care Research Department within University College London. Since 2007 the focus of her research has been on treatments and interventions in Palliative Care. Her work has informed national clinical guidelines in the UK and internationally. She is interested in exploring emerging review methods, to include underutilized data, in particular for qualitative and mixed methods review. Bridget acknowledged the many people without who she felt her
achievement would not have been possible; in particular, she highlighted the support from Dr Louise Jones, the ex-head of the UCL Marie Curie Palliative Care Research Department, and Professor Paddy Stone, the current head. She also highlighted that her award was also a mark of international recognition of the contribution of systematic reviews in palliative care.
The Clinical Impact Award
The winner was Dr Kirsten Wentlandt of the University Health Network, Toronto, Canada. She currently divides her time between the provision of palliative care clinical services, teaching, and research development. Her research interests are varied, utilizing concepts and ideas that have emerged through her experiences in both her clinical corporate teachings. The areas explored by Dr Wentlandt include; quality patient care, patient satisfaction, barriers to care, and the targeting physicians and their leaders.
Kristen spoke about what she had learned in her PhD, specifically her research in physiology and neurosciences that had prepared her for her career in palliative care.
Her current research now focuses on barriers and improving access to palliative care, working to define quality and understand patient satisfaction; attempting to look at inequities and alternative models of care to support the provision of care to the non-cancer palliative population. Kristen highlighted how her PhD in neurosciences and then having to cross the divide between basic and clinical sciences, both in research and practice, has ultimately allowed her to learn more about the nature of people, how to ask questions and seek answers and adjusting to life’s successes and failures, which are lessons well-learned in any field. She paid special recognition to the contribution to her career and support of two incredible individuals: Dr Peter Carlen and Dr Camilla Zimmermann (aka crazy scientists).
The Early Researcher Award
The very popular winner of this award was Martin Loučka, a psychologist from the Czech Republic. Martin completed a PhD on end of life care at the International Observatory at Lancaster University, UK and was awarded a postdoctoral Fulbright Scholarship to work at the Icahn School of Medicine at Mount Sinai, New York. He established and currently leads the Center for Palliative Care in Prague, the first research organization in this field in the Czech Republic.
Speaking at the Congress, Martin said he was honoured to receive this year’s Early Researcher Award, to share what has influenced his professional life so far and helped him to get to this exciting moment in his career. He also spoke about how in order to get involved in the hospice movement in his own country, he actually moved abroad to learn from more developed countries, and he recommended getting international work experience if possible. He went on to thank all those who have supported and inspired him, including professors on the EURO IMPACT project, Luc Deliens, Bregje Onwuteaka-Philipsen, Irene Higginson, Lieve van den Block, Stein Kaasa, Augusto Caraceni and Joachim Cohen, and gave special mention to his PhD supervisors – Professor Sheila Payne and Dr Sarah Brearley. Martin advised all those undertaking further studies to “find the best supervisor possible. Get to know the best people in your field and listen to all of them carefully”.
Since 2014, Martin has established and led the Center for Palliative Care in Prague; examples of their public education work can be found at allswell.info or thinkaboutdeath.org
The Irish Association for Palliative Care would like to thank all our members for their support of the Congress and of the Association in the months prior to the Congress and all who attended in such high numbers. We would also like to thank all the members of the Local Organizing Committee: Dr Margaret Clifford, Consultant in Palliative Medicine, St Joseph’s Hospice, London; Dr Michael Connolly, Lecturer, School of Nursing, Midwifery and Health Systems, UCD, Dublin; Ms Niamh Finucane, Co-ordinator of Social Work and Bereavement Services, St Francis Hospice, Dublin; Dr Paul Gregan, Consultant in Palliative Medicine, Blackrock Hospice, Dublin and General Practitioner; Ms Debbie Hayden, Nurse Tutor, Our Lady’s Hospice and Care Services, Dublin; Ms Morna O’Hanlon, Retired Clinical Nurse Specialist, St James’s Hospital, Dublin; Cathy Sheehan, Company Secretary, Milford Care Centre, Limerick and Ms Barbara Whyte, Clinical Nurse Specialist, St Vincent’s University Hospital, Dublin.
Further we would like to thank the twenty-one volunteers; drawn from the IAPC membership, hospice volunteers and friends of IAPC colleagues. Their time, commitment and professionalism ensured the smooth running of the Congress itself.
Finally thank you to IAPC Administrative Assistant Hannah Dyas, and Chairperson of the Local Organising Committee, Olwyn Ryan, without whom none of this would have been possible.