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.

Members of the Board of IAPC and members of the Local Organising Committee EAPC 2016

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.

Niamh Finucane (Chair IAPC 2016 and Co-Ordinator of Social Work & Bereavement Services, St Francis Hospice, Dublin)

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:

• Cancer-related Fatigue: Evaluation by Mobile Electrophysiology, Dr Brenda O’Connor; who spoke about the use of modern technology in determining the precise cause of symptoms, including cancer-related fatigue (CRF)’, “Fatigue is experienced by most people with cancer and is particularly common for those on cancer treatment. One problem in the management of fatigue is that we don’t fully understand the underlying cause. The problem can be in the brain or in the muscle fiber. I am involved in a study, which is exploring the use of modern technology to establish the location of the underlying problem – and with the technology we can do our assessments in the patients own environment, not necessarily involving hospital admission. In developing this technology we can improve our capacity and ability to manage very common cancer related problems including cancer related fatigue.”
• The Association between Phase of Illness and Patient and Carer Outcomes. Is ‘Time Spent in the Stable Phase’ a Potential High Level Key Performance Indicator? The Results of a Prospective Observational Cohort Study of Consecutive Admissions to a Specialist Palliative Care Unit in Ireland, Dr Mike Lucey, Consultant in Palliative Medicine, Milford Care Centre, Limerick. The aim of this study was to evaluate the association between phase of illness (stable, unstable, deteriorating, terminal and bereaved), and patient and carer outcomes, and was a prospective, observational cohort study of consecutive admissions to a Specialist Palliative Care Unit.
• Can we have a Single Guidance for Bereavement Care in European Palliative Care Services? Exploring Common Priorities for Bereavement Care and Perceptions of Cultural Determinants of Grief, Irene Murphy, Director of Bereavement & Family Support Services, Marymount Hospice, Cork. This cross-sectional descriptive study used online survey methods which allowed quantitative and qualitative analyses. A survey was distributed to 56 national associations in EAPC in 32 countries in December 2013 and January 2014. Responses were received from 25 (78%) countries. Three main themes were indicated on priorities for future development of bereavement care;
• Need to improve structures for assessment of need evaluation of service provision; Expand range of clinical services in response to bereavement need; Build or enhance links to community services.
• Respondents also described what was unique about their country with regard to bereavement, and six common themes were identified by almost all countries;
• Grief as belonging to the private sphere of individual/family or community;
• Importance of rituals & church based supports;
• Bereavement care mainly provided by hospice volunteers/palliative care;
• Lack of societal openness to speak about death & dying;
• Bereavement care lacks guidance and methodology;
• Cultural diversity within the countries as challenge.

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”.

• A Survey of Attitudes towards Palliative Medicine amongst Nurses Working in the Emergency Department, Millie Devenish, Clinical Nurse Specialist, St Vincent’s University Hospital, Dublin. This presentation reflected the current work in St Vincent’s University Hospital Dublin in relation to a quality improvement initiative integrating Palliative Care in the Emergency Department, which aims to improve the recognition of palliative care needs of patients presenting to the Emergency Department; to improve the response of staff to these needs and to embed reflective practice; to assess the understanding and attitudes of ED nurses about palliative care needs in the ED, the working environment, behaviour in practice, their previous education/training and educational preferences. The results of a survey conveyed that respondents considered the ED a place to provide resuscitation and aggressive medical care, not palliative care, with nurses indicating they would benefit from additional education in symptom control, training in syringe drivers and communication with families. Overall there was a clear understanding of the role of palliative care and they cited pertinent triggers in initiating palliative referrals. Importantly most nurses (64%) did not have difficulty in recognising when a patient is dying.
• Palliative Care at the Front Door – Improving the Recognition of Palliative Care Needs of Patients Attending an Irish Emergency Department; John Ryan, St Vincent’s University Hospital, Dublin. This research focused the ascertain that early engagement with Palliative Medicine services in an acute hospital setting leads to better outcomes and the aim of the work undertaken was to improve the recognition of palliative care needs of patients attending an Irish Emergency Department. New guidelines and systems for the early identification of patients with palliative care needs were introduced in the Emergency Department, through the development of a new tool – P.A.U.S.E. which was developed to identify patients not known to Palliative Medicine. Patients already know to the Palliative Team were flagged in the patient administration system. Education for doctors and nurses in the Emergency Department was augmented by the daily presence of the Palliative Medicine team in the Emergency Department. The results showed that during the baseline period, 61% of all referrals to the Palliative Medicine Service were admitted to the hospital via the Emergency Department, but only 6 patients (10%) were referred and seen while in the ED. Following the introduction of the new guidelines and systems, 54 % of all referrals (91) patients were admitted via the ED, 46 of whom (51%) were referred and seen while in ED, a 5 fold increase. It was very clear from this research that  he introduction in the ED of specifically designed referral guidelines to Palliative Medicine services leads to a significant increase in early referrals and enhanced delivery of service.
• Compassion Fatigue in Nursing Staff Caring for Palliative Patients in Tertiary Care Settings in Ireland, Helen Flanagan, Milford Care Centre, Limerick. There is a growing interest internationally in the clinical phenomenon of compassion fatigue and how it impacts on healthcare workers. With increasing numbers of patients being cared for by specialist palliative care services and the fact that people are living for longer, more nursing staff will increasingly be involved in the delivery of care to palliative patients. It was therefore imperative that compassion fatigue among nursing staff caring for palliative patients was explored. A cross sectional descriptive design was undertaken across three palliative care sites in the Mid-western region of Ireland using the professional quality of life scale ProQOL, a validated measure of compassion satisfaction and fatigue. A response rate of 75% was achieved. The findings revealed that the majority of nursing staff experienced compassion fatigue across all sites, however one site had higher scores in compassion fatigue & burnout. There were also high levels of compassion satisfaction across all three sites indicating that nursing staff were happy to be working in palliative care. The most important factors reported as influencing risk for compassion fatigue in nursing staff according to analysis of the ProQOL were the traumatic experiences of patients (47%), difficulty with professional boundaries (36%) and being preoccupied with more than one of those they care for (72%). This study demonstrated the extent of compassion fatigue among palliative care nursing staff and clearly indicated that this is a significant problem that required attention. Furthermore the identification of the factors that led to compassion fatigue prompted a follow on study which examines whether educational and psychological interventions can reduce levels of compassion fatigue and burnout in nursing staff caring for patients with delirium.
• Rare Diseases Website: Developing the Parent-to Parent Content of a Rare Disease Website in Ireland, Aileen Lynch, School of Nursing and Midwifery, Trinity College Dublin, Dublin.

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”.

Prof Phil Larkin (President EAPC and Associate Professor of Clinical Nursing, School of Nursing, Midwifery & Health Systems, UCD); Prof Russell Portenoy MD (Ventafridda Lecture).

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

2016 EAPC Researcher Awards ceremony:
(L to R): Prof Stein Kaasa (Chair EAPC Research Network); Dr Bridget Candy; Dr Kirsten Wentlandt; Dr Martin Loučka and Prof Christoph Ostgathe (EAPC Board Member)

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.

Olwyn Ryan (Chair, Local Organising Committee EAPC 2016); Morna O’Hanlon (Member, Local Organising Committee EAPC 2016); Dr Mags Clifford (Consultant in Palliative Medicine, St Joseph’s Hospice, London); 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.