Association for Palliative Care (EAPC)

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T H E J O U R N A L O F T H E E U R O P E A N A S S O C I A T I O N F O R P A L L I A T I V E C A R E

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Association for Palliative Care (EAPC)

Madrid, Spain, 18-20 May 2017

Abstracts

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Via Venezian 1 20133 Milan

ITALY

Tel: +39 02 2390 3390 Fax: +39 02 2390 3393

www.eapcnet.org

publishers of the European Journal of Palliative Care

a division of Hayward Group Ltd, The Pines, Fordham Road, Newmarket CB8 7LG, UK Published by

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EAPC President’s Welcome

Dear Friends,

Welcome to the wonderful city of Madrid! Bienvenidos a Madrid!

On behalf of the EAPC Board of Directors, I am delighted to welcome you to the IFEMA Congress centre and to the 15th EAPC World Congress. This Congress, as others, is the result of two years of planning, organisation, meetings, reflection, decision-making and finally, here we are! I am in no doubt that the 2017 Congress will demonstrate how, in so many ways, we are ‘progressing palliative care’.

The choice of title is important. Both as an organisation and as a discipline, we are making progress. As I am sure you will experience over the three days of Congress, we continue to shape the global palliative care landscape in terms of research, education and clinical practice. This Congress is our opportunity to share and celebrate our work, to greet old friends and make new, but ultimately to remember that our time together in Madrid

demonstrates that, in a myriad of ways, we share one goal: to promote the optimal care of patients and families living with chronic, life-limiting and life-threatening disease. And we should never forget that we do that well.

The multidisciplinary nature of palliative care is the strength of our identity. I am particularly pleased that this Congress will honour the essential work of volunteers as a key component of that multidisciplinary team through launching a new EAPC charter on volunteerism. My particular thanks to Leena Peltaari, Ros Scott and EAPC Board Member Catherine Walshe for bringing this important work to this point.

As always, there are many people to thank. Not least is the Scientific Committee, ably led by Professor Dr.

Christoph Ostgathe as Chair, and his team in Erlangen, Dr. Franziska Herbst and Ms. Andrea Scotti. Thank you all for your contribution, vision, leadership and tenacity in bringing this Congress to us. Equally important is the Local Organising Committee under the direction of Dr. Alberto Alonso Babarro and Mr. Carlos Alonso and SECPAL, without whom this Congress would not have been possible. Les damos las gracias por hacer posible este Congreso en España.

Y a nuestros colegas españoles … Deseo dar una bienvenida especial a todos nuestros delegados de España y agradecerles la invitación a su hermoso país.

And of course, thanks to the EAPC Head Office Team, Dr Julie Ling, Dr Amelia Giordano and Ms Eleanor Blake for their continuing work to support this Congress.

The theologian and philosopher, Henri Nouwen exhorts us to ‘be sure that you make a difference in the world’. I hope that your time in Madrid helps you appreciate how you make that difference.

I wish you a wonderful Congress and an enjoyable visit to this most wonderful city.

Professor Philip J Larkin

President, European Association for Palliative Care

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Welcome from the Chairs of the Scientific and Local Organising Committee

Dear Congress Participant,

On behalf of the EAPC Board and the organising committees we are delighted to welcome you to Madrid and the 15th World Congress of the European Association for Palliative Care. Throughout the world, palliative care is growing in strategic importance to healthcare delivery. In some countries, however, the development of quality-driven systems to meet the increasing need for best possible care for patients with advanced diseases and their families remains underdeveloped. Therefore, the title chosen for this congress is ‘Progressing Palliative Care’. ‘Progress’ stands for the better transition of evolving evidence into practice, timely integration of palliative care into general care, further service development with adequate access to specialised care and the openness to new technologies in our field.

The congress provides the opportunity for you to discuss advances in the field of palliative care, to debate how access to palliative care is developing globally, to assess the integration of palliative care across healthcare systems and ultimately to affirm, develop and change our multi-professional practice. Societal involvement in palliative care continues to be critical to broadening the development and the vision and scope of palliative care. The launch, at this congress, of the ‘Voice of Volunteering’ – the EAPC Madrid Charter on Volunteering in Hospice and Palliative Care – recognises the impact that volunteers have on patients, families and the wider hospice and palliative care community. In particular, the charter acknowledges the role that volunteers make to the patient and family experience.

From the first EAPC congress in Paris in 1988 to Copenhagen in 2015, the EAPC World Congresses have developed and evolved and continue to provide a platform for all of those working in palliative care. More than 2,500 delegates representing a range of disciplines from many countries in Europe and from further afield will attend this EAPC World congress. This makes it the ideal forum for the exchange of new information, the discussion of new research results, and the provision of up-to-date education and training. Additionally, attending the EAPC World Congress also provides a unique opportunity to network and meet with colleagues, clinicians, caregivers, researchers and educators in palliative care from across the globe to exchange

knowledge and to share experiences.

Madrid is honoured and proud to host the EAPC World Congress and wishes a warm welcome to the global palliative care community. The cosmopolitan capital of Spain is an open and thriving metropolis, which has embraced change whilst maintaining strong Spanish tradition. Madrid is a beautiful city with many world-class attractions and it is the only capital city in the world that has six World Heritage Cities only one hour by car from the city centre. We hope you will find time to take advantage of the climate, food, and culture that Madrid provides.

We are delighted that HRH Queen Letizia of Spain is the President of Honour for the EAPC conference 2017.

Professor Dr. Christoph Ostgathe Dr. Alberto Alonso Babarro

Chair of the Scientific Committee Chair of the Local Organising Committee

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– 6 – Scientific Committee

Christoph Ostgathe (Germany) Alberto Alonso Babarro (Spain) Javier Rocafort (Spain) Phil Larkin (Ireland) Tiina Saarto (Finland) Martin Loucka (Czech Republic) Carla Reigada (Portugal) Carlo Leget (The Netherlands) Katherine Froggatt (United Kingdom) Local Organising Committee Alberto Alonso Babarro Álvaro Gándara Javier Rocafort Manuela Monleón Ricardo Martino Cristina de Miguel Mariant Lacasta Antonio Noguera Lourdes Rexach EAPC Head Office

Julie Ling, Chief Executive Officer Eleanor Blake, Administrator Catherine Murray, Administrative Assistant

Avril Jackson, Social Media Lead Reviewers

Aass, Nina (Norway) Agar, Meera (Australia) Almack, Kathryn (United Kingdom) Alonso Babarro, Alberto (Spain) Alt-Epping, Bernd (Germany) Antunes, Barbara (Portugal) Axelsson, Bertil (Sweden) Baracos, Vickie (Canada) Baumgartner, Johann (Austria) Bausewein, Claudia (Germany) Benitez Rosario, Miguel Ángel (Spain) Benkel, Inger (Sweden)

Bennett, Mike (United Kingdom) Bergstraesser, Eva (Switzerland) Beyer, Sigrid (Austria) Bhatnagar, Sushma (India) Bilsen, Johan (Belgium) Birtar, Delia (Romania) Bitschnau, Karl (Austria) Boland, Elaine (United Kingdom) Boland, Jason (United Kingdom) Bollig, Georg (Germany) Bolognesi, Deborah (Italy) Bonde Jensen, Anders (Denmark) Bruera, Eduardo (United States) Brunelli, Cinzia (Italy)

Burman, Rachel (United Kingdom) Busch, Christian (Denmark) Capelas, Manuel Luís (Portugal) Caraceni, Augusto (Italy) Carneiro, Rui (Portugal) Centeno, Carlos (Spain) Cetto, Gianluigi (Italy) Chambaere, Kenneth (Belgium) Chambers, Lizzie (United Kingdom) Chan, Kin-Sang (Hong Kong) Cohen, Joachim (Belgium) Connor, Stephen (United States) Costantini, Massimo (Italy) Craig, Finella (United Kingdom)

Cuervo Pinna, Miguel Ángel (Spain) Curfs, Leopold (Netherlands) Curiale, Vito (Monaco) Currow, David (Australia) de Boer, Marike (Netherlands) De Conno, Franco (Italy) De Lima, Liliana (United States) De Simone, Gustavo (Argentina) de Visser, Marianne (Netherlands) Deliens, Luc (Belgium) Downing, Julia (United Kingdom) Doyle, Derek (United Kingdom) Dziegielewska-Gesiak, Sylwia (Poland) Eisenchlas, JorgeHugo (Argentina) Elsner, Frank (Germany) Engels, Yvonne (Netherlands) Ewing, Gail (United Kingdom) Eychmueller, Steffen (Switzerland) Fainsinger, Robin (Canada) Farquhar, Morag (United Kingdom) Ferris, Frank (United States) Filbet, Marilène (France) Fineberg, Iris Cohen (United States) Firth, Pam (United Kingdom) Flores Pérez, LuisAlberto (Spain) Foley, Kathleen (United States) Forbes, Karen (United Kingdom) Frasca, Matthieu (France) Froggatt, Katherine (United Kingdom) Fürst, Carl Johan (Sweden) Gadoud, Amy (United Kingdom) Gambassi, Giovanni (Italy)

Garcia-Baquero Merino, Teresa (Spain) Giardini, Anna (Italy)

Gomes, Barbara (Portugal/United Kingdom)

Gonçalves, Edna (Portugal) Goodhead, Andrew (United Kingdom) Gove, Dianne (Germany)

Grande, Gunn (United Kingdom) Gretton, Sophy (United Kingdom) Griffo, Yvona (United States) Groenvold, Mogens (Denmark) Guldin, Mai-Britt (Denmark) Gwyther, Liz (South Africa) Harding, Richard (United Kingdom) Hasselaar, Jeroen (Netherlands) Haugen, Dagny Faksvåg (Norway) Hegedus, Katalin (Hungary) Heimerl, Katharina (Austria) Hoenger, Catherine (Switzerland) Hopkinson, Jane (United Kingdom) Hoskin, Peter J. (United Kingdom) Hudson, Peter (Australia) Janssen, Daisy (Netherlands) Johnson, Miriam (United Kingdom) Johnston, Bridget (United Kingdom) Johnstone, Ros (United Kingdom) Jox, Ralf J. (Switzerland) Kaasalainen, Sharon (Cananda) Kabelka, Ladislav (Czech Republic) Keegan, Orla (Ireland)

Kinley, Julie (United Kingdom) Kissane, David (Australia) Klepstad, Pål (Norway)

Koffman, Jonathan (United Kingdom) Krajnik, Malgorzata (Poland) Krakowiak, Piotr (Poland) Kreicbergs, Ulrika (Sweden) Krizanova, Kristina (Slovakia)

Kurita, Geana (Denmark) Laird, Barry (United Kingdom) Larkin, Philip J. (Ireland) Leget, Carlo (Netherlands) Lehto, Juho (Finland) Leppert, Wojciech (Poland) Likar, Rudolf (Austria) Ling, Julie (Ireland)

Lloyd-Williams, Mari (United Kingdom) Loge, Jon Håvard (Norway) Lopes Ferreira, Pedro (Portugal) Lorenzl, Stefan (Germany) Loucka, Martin (Czech Republic) Lundström, Staffan (Sweden) Mackova, Marie (Czech Republic) Maddocks, Matthew (United Kingdom) Maia e Moura, Claudia Maria (Portugal) Maltoni, Marco (Italy)

Marston, Joan (South Africa) Martino, Ricardo (Spain) Martins Pereira, Sandra (Spain) McCaffrey, Nikki (Australia)

McEnhill, Linda Susan (United Kingdom) McLaughlin, Dorry (United Kingdom) Mercadante, Sebastiano (Italy) Miccinesi, Guido (Italy) Mitrea, Nicoleta (Romania) Moine, Sébastien (France) Morgan, Deidre (Australia) Mosoiu, Daniela (Romania) Mueller-Busch, Christof (Germany) Murray, Scott (United Kingdom) Murtagh, Fliss (United Kingdom) Muszbek, Katalin (Hungary) Mystakidou, Kyriaki (Greece) Nauck, Friedemann (Germany) Neergaard, Mette Asbjørn (Denmark) Nicholson, Caroline (United Kingdom) Nijs, Ellen (Netherlands)

Noble, Simon (United Kingdom) Noguera Tejedor, Antonio (Spain) Nolan, Steve (United Kingdom) Normand, Charles (Ireland) O‘Brien, Tony (Ireland) O‘Connor, Margaret (Australia) Olagunju, Andrew (Nigeria) Oliver, David (United Kingdom) Onwuteaka-Philipsen, Bregje (Netherlands)

O‘Reilly, Maeve (Ireland) Ostgathe, Christoph (Germany) Panagiotou, Irene (Greece) Papadatou, Danai (Greece) Parker, Deborah (Australia) Pascual, Antonio (Spain) Pasman, H. Roeline (Netherlands) Pautex, Sophie (Switzerland) Payne, Sheila (United Kingdom) Pedersen, Lise (Denmark) Pelttari, Leena (Austria) Pereira, Jose Luis (Canada) Peruselli, Carlo (Italy) Petruta, Anania (Romania) Pigni, Alessandra (Italy) Pimenta, Cibele (Brazil) Pleschberger, Sabine (Austria) Porta-Sales, Josep (Spain) Portenoy, Russell (United States) Powell, Richard Antony (Kenya) Radbruch, Lukas (Germany)

Raijmakers, Natasja (Netherlands) Rasmussen, Birgit Holritz (Sweden) Read, Susan (United Kingdom) Reigada, Carla (Portugal) Reitinger, Elisabeth (Austria) Reyners, An (Netherlands) Rietjens, Judith (Netherlands) Riley, Julia (United Kingdom) Robinson, Jackie (New Zealand) Rodio, Gustavo Francisco (Argentina) Rombouts, Walter (Belgium) Ross, Joy (United Kingdom) Ryan, Karen (Ireland) Saarto, Tiina (Finland) Sabatowski, Rainer (Germany) Sallnow, Libby (United Kingdom) Sampson, Elizabeth (United Kingdom) Sapeta, Paula (Portugal)

Schmidlin, Esther (Switzerland) Scott, Ros (United Kingdom) Selman, Lucy (United Kingdom) Simões, Angela (Portugal) Simões, Catarina (Portugal) Simon, Steffen (Germany) Sinclair, Shane (Canada) Sjøgren, Per (Denmark) Slama, Ondrej (Czech Republic) Sleeman, Katherine (United Kingdom) Sobanski, Piotr (Switzerland) Speck, Peter (United Kingdom) Stiel, Stephanie (Germany) Stone, Carol (United Kingdom) Stone, Paddy (United Kingdom) Strasser, Florian (Switzerland) Szczerbinska, Katarzyna (Poland) Tarquini, Daniela (Italy) Tavares, Miguel (Portugal) Taylor, Ros (United Kingdom) Teno, Joan (United States) Thomas, Keri (United Kingdom) Timm, Helle (Denmark) Tishelman, Carol (Sweden) Toma, Stefan (Romania)

Tuffrey-Wijne, Irene (United Kingdom) Turner, Mary (United Kingdom) Van den Block, Lieve (Belgium) Van den Eynden, Bart (Belgium) Van Den Noortgate, Nele (Belgium) van der Heide, Agnes (Netherlands) van der Steen, Jenny (Netherlands) Van Nes, Marie-Claire (Belgium) van Vliet, Liesbeth (United Kingdom) Veronese, Simone (Italy)

Vissers, Kris (Netherlands) Volicer, Ladislav (United States) Voltz, Raymond (Germany) von Gunten, Charles (United States) Vvedenskaya, Elena

(Russian Federation)

Walshe, Catherine (United Kingdom) Wasner, Maria (Germany) Watzke, Herbert (Austria) Westergard, Britt-Evy (Norway) Wood, Chantal (France) Yardley, Sarah (United Kingdom) Zambelli, Agostino (Italy) Zaninetta, Giovanni (Italy) Zeppetella, Giovambattista (United Kingdom) Zernikow, Boris (Germany)

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Plenary Sessions

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PL01 Progressing Palliative Care: Current Perspectives and Future Directions

PL02 Beyond Cancer: Challenges and Opportunities for Early Palliative Care Engagement PL03 Challenges for Palliative Care in Changing Societies

PL04 From Bed to Bench and Back: Finding Evidence to Support our Clinical Practice PL05 Floriani Lecture: Progressing Palliative Care in Low and Middle Income Countries PL06 Filling the Gap between People, Management and Technology in Palliative Care

■ Best Abstract/Mejor Abstract

Social Inequalities in Admission to Specialist Palliative Care. A Nationwide Study from the Danish Palliative Care Database

A Phase III, Multi-site, Randomised, Double Blind, Placebo Controlled Parallel Arm Study of Daily Extended Release (ER) Morphine for Chronic Breathlessness

Building Primary Level Palliative Care Capacity through Education across Canada:

The Pallium Canada Experience

■ EAPC Researcher Award Plenary: Winner of the Post-Doctoral Award Palliative Care for People with Intellectual Disabilities: An International Perspective

■ EAPC Researcher Award Plenary: Winner of the Clinical Impact Award Dignity and Other Lessons from Portuguese Clinical Research

■ EAPC Researcher Award Plenary: Winner of the Palliative Medicine Early Researcher Award Cross-National Comparisons Today and in the Future

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PL01

Progressing Palliative Care: Current Perspectives and Future Directions

Meier D.

School of Medicine at Mount Sinai, New York, United States Presenting author email address: diane.meier@mssm.edu

No abstract available

Plenary Sessions

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PL02

Beyond Cancer: Challenges and Opportunities for Early Palliative Care Engagement

Bausewein C.

Ludwig-Maximilians-Universität München, Munich University Hospital, Department for Palliative Medicine, Munich, Germany

Presenting author email address: claudia.bausewein@med.uni-muenchen.de

Palliative care should be provided to patients with advanced stages of disease irrespective of diagnoses. However, the majority of patients receiving palliative care suffer from cancer.

Patients with non-malignant diagnoses, such as cardio- respiratory, kidney or liver failure or dementia, have similar symptom burden and palliative care needs as cancer patients but often earlier in the disease trajectory. Prognosis in non- oncological patients is more challenging, with repeated crises, such as acute exacerbations or acute decompensation in organ failure or more lingering decline in dementia and frailty.

Traditional palliative care models as developed in cancer patients might not be appropriate for these patient groups and might not be a good use of resources. Palliative care provision should be based on need rather than diagnoses or prognoses.

Therefore, models of evaluating patients’ needs regularly need

to be developed, with indicators and pathways to aid in deciding when to consider palliative care provision.

Depending on the underlying disease, various models of palliative care provision are imaginable. These vary from strengthening of generalist palliative care and integrated care models in primary and home-based care to more specialist palliative care services for specific diseases, such as heart failure or COPD. Also, symptom-specific services, such as breathlessness services, might provide an opportunity for early integration of palliative care in these patient groups. If

palliative care should be provided to all patients with advanced disease who are in need, clinicians, researchers, funders and policy makers need to challenge the traditional models and perceptions of palliative care and develop new ways to optimise outcome for these patients.

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PL03

Challenges for Palliative Care in Changing Societies

Kellehear A.

University of Bradford, Faculty of Health Studies, Bradford, United Kingdom Presenting author email address: a.kellehear@bradford.ac.uk

This presentation summarises the ongoing evolution of palliative care’s involvement in the social dimensions of care – tracing this care from efforts by professionals, then volunteers from hospice, to volunteers in the community, and finally to civil actions in towns and cities. Civil actions are part of a ‘public health’ approach to palliative care – they promote prevention, harm reduction and early intervention strategies designed to address the co-morbidities of dying, ageing, caregiving, and grief. Core parts of these actions include

community development, public education, social ecology, health promotion, and policy development. These actions occur within local government, workplaces or schools, or within religious or cultural organizations. Most of these social actions are generated by what are now called

“Compassionate Cities”. Each city commits to a 13-point Charter guiding them to particular areas of social support in broad areas of end-of-life care. The international development of these city-wide approaches are described.

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PL04

From Bed to Bench and Back: Finding

Evidence to Support our Clinical Practice

Haugen D.F.^1,2

1University of Bergen, Department of Clinical Medicine K1, Bergen, Norway; ²Haukeland University Hospital, Regional Centre of Excellence for Palliative Care, Western Norway, Bergen, Norway

Presenting author email address: dagny.haugen@uib.no

Bedside care is familiar to every palliative care practitioner. We observe and listen to our patients in order to give them the best possible personalized care. However, sometimes we make observations that do not make sense or challenge our professional perceptions and practice. This talk will start by presenting some fascinating examples of how bedside

observations have triggered research that in turn has given new perspectives on clinical practice – from bed to bench and back.

Evidence in palliative medicine has mostly come from clinical research: registry studies, health services research, and observational and interventional studies directly involving patients or family members. Bench research refers to basic science research mostly performed in a laboratory. The concept of ‘bench to bed’ often relates to research directed at finding out one particular piece of a scientific puzzle, using modern ‘-omics’ techniques that analyze the function and structure of proteins or genetic material. This approach is

linked to the current concept of ‘personalized medicine’ or

‘precision medicine’, which aims to select the most

appropriate therapies based on a patient’s genetic makeup or other molecular or cellular characteristics.

This talk will try to outline the basics of ‘precision medicine’

and discuss its relevance for palliative care, both the limited applicability at present and more promising future prospects.

The emphasis will be placed on some practical examples of

‘bench to bed’ translations.

Leading experts in palliative care and oncology have argued that ‘personalized medicine’ in its new meaning may overshadow the individually tailored, whole-person care that is fundamental for the palliative care approach (Cherny et al, JNCI 2014). Palliative care must face the challenge of applying basic science results to clinical practice while at the same time affirming its culture and philosophy.

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– 14 – Plenary Sessions

PL05

Floriani Lecture: Progressing

Palliative Care in Low and Middle Income Countries

De Lima L.

IAHPC, Executive Director, Houston, TX, United States

In May 2014, the World Health Assembly (WHA) adopted a palliative care (PC) resolution, which outlines clear recommendations to the UN member states, such as including PC in national health policies and in the

undergraduate curricula for healthcare professionals. It also highlights the critical need for countries to ensure that there is an adequate supply of essential PC medicines, especially those needed to alleviate pain.

This WHA resolution carries great challenges: Every year over 20 million patients (of which 6% are children) need PC at the end of life. However, in 2011, approximately three million patients received PC, and only one in ten people in need of PC is currently receiving it. Most of the world’s population, especially those living in Low and Middle Income Countries (LMICs), has little or no access to pain control and palliative care.

The purpose of this plenary is to present a summary of the status of PC development in LMICs.

The main objectives of this presentation are to:

1. Provide information on the status of PC in LMICs

2. Present the challenges that LMICs face and possible ways to overcome them

3. Identify some success stories from LMICs, and look at how they may serve as examples to other countries of the world 4. Explore ways in which civil society and academia could

collaborate to continue advancing PC efforts

There are ways in which the inequities can be overcome and they all require awareness and understanding of the political, social, economic and ethical issues relevant to this situation:

Universal health coverage must include PC; healthcare workers need to be educated; and PC needs to be recognized as an essential priority for funding in health.

After this presentation, participants will have a better understanding as to how the global PC community can help in progressing PC in LMICs and the ways in which mutual collaboration may be beneficial for the development of PC globally.

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PL06

Filling the Gap between People, Management and Technology in Palliative Care

Herrera Molina E.

New Health Foundation, Sevilla, Spain

Presenting author email address: emilio.herrera@newhealthfoundation.org

No abstract available

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Best Abstract/Mejor Abstract

Social Inequalities in Admission to Specialist Palliative Care.

A Nationwide Study from the

Danish Palliative Care Database

Adsersen M.¹, Thygesen L.C.², Groenvold M.^1,3

1Department of Palliative Medicine, Bispebjerg Hospital, Research Unit, Copenhagen, Denmark; ²National Institute of Publich Health, University of Southern Denmark, Copenhagen, Denmark; ³Department of Publich Health, Copenhagen University, Copenhagen, Denmark

Background: Socioeconomic position (SEP) has repeatedly been found to be associated with admittance to healthcare facilities, but studies investigating its influence on access to specialised palliative care (SPC) are few and limited.

Aim: To investigate whether cancer patients’ SEP is associated with their admittance to SPC

(hospital palliative care team/unit and/or hospice).

Method: A register-based study with data from the Danish Palliative Care Database, The Danish Cancer Registry and national registers at Statistics Denmark (2010–12). SEP was measured by education and family income. The associations were investigated using logistic regression analysis adjusting for sex, age, cancer diagnosis, cohabiting status and geographic region.

Results: In the study population (N=44,480), 6% had missing data about education or income. Primary school was the highest attained education level for 45%; 6% had a long

academic education. Admittance to SPC increased with increasing education level: persons with a long academic education were more likely to be admitted to SPC than those having completed primary school only (OR=1.68; CI

1.50–1.88). The results were similar when subdivided into hospital-based palliative care team/unit and hospice; OR=1.47;

CI 1.30–1.67; OR=1.72 1.51–1.96, respectively. In relation to income, admittance to SPC increased with increasing income:

persons in the highest quartile of income were more likely admitted to SPC compared to the lowest quartile (OR 1.43; CI 1.34–1.52). This association was stronger for hospice (OR=

1.67; CI 1.54–1.80) than for hospital-based palliative care team/unit (OR= 1.18; CI 1.10–1.26).

Conclusion: This nationwide register-based study indicated that admittance to SPC was clearly associated with education and income. We hypothesise that persons with lower SEP do not have the same resources to communicate their needs and to search knowledge about SPC. We believe that the observed associations indicate inequity and should be corrected.

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A Phase III, Multi-site, Randomised, Double Blind, Placebo Controlled

Parallel Arm Study of Daily Extended Release (ER) Morphine for Chronic Breathlessness

Currow D.¹, Ekström M.^1,2, Fazekas B.³, Plummer J.⁴, Quinn S.⁵, McDonald C.⁶, Agar M.⁷, Clark K.⁸, Eckermann S.⁹, Abernethy A.¹⁰

1Discipline of Palliative and Supportive Services, Flinders University, Daw Park, Australia; ²Department of Clinical Sciences, Division of Respiratory Medicine & Allergology, Lund University, Lund, Sweden; ³Palliative Care Clinical Studies Collaborative (PaCCSC), Flinders University, Daw Park, Australia; ⁴Flinders Medical Centre, Bedford Park, Australia;

5Department of Statistics, Data Science and Epidemiology, Swinburne University of Technology, Hawthorn, Australia;

6Austin Health, Heidelberg, Australia; ⁷Centre for Cardiovascular and Chronic Care (CCCC), University of Technology, Ultimo, Australia; ⁸School of Medicine & Public Health, Calvary Mater Newcastle & University of Newcastle, Waratah, Australia; ⁹University of Wollongong, Wollongong, Australia; ¹⁰Duke University, Carey, United States

Presenting author email address: david.currow@sa.gov.au

Introduction: Phase II studies and meta-analyses support using regular low-dose oral morphine to safely reduce chronic breathlessness when underlying causes are treated optimally.

Aim: To determine efficacy and safety of ER morphine for relieving chronic breathlessness and predictors of response.

Methods: Opioid-naïve participants with modified Medical Research Council scores (mMRC) 2–4 despite optimal treatment of the underlying cause(s) were randomised to double-blinded placebo or 20mg ER morphine daily for 7 days. The primary outcome was reduction in breathlessness intensity (0–100mm visual analogue scale; a clinically meaningful reduction is >5.5mm.). Secondary endpoints were adverse events.

Results: 282 participants (mean age 73.7, SD 9.5; 162 [57%] with COPD) were randomised in 12 sites in Australia.

There was no difference in average breathlessness over the previous 24 hours, but worst breathlessness in people with COPD and mMRC 3 or 4 was significantly reduced in the intervention arm (response rate 54% vs 33%; p=0.035).

Using an adjusted mixed model with daily scores, worst breathlessness improved on morphine compared to placebo (4.57mm; 95% CI, 0.31 to 8.83; p=0.036); in patients with COPD (6.30 mm; 95% CI, 1.36 to 11.24; p=0.012); and COPD with mMRC 3,4 (11.47mm; 95%CI, 5.21 to 17.73; p < 0.001).

Withdrawals were similar between arms (time to event, event rate). Constipation and drowsiness were more frequent on morphine. There were no treatment-emergent episodes of respiratory depression.

Conclusion: People with COPD and more severe chronic breathlessness gain symptomatic benefit safely from daily ER morphine.

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Building Primary Level Palliative Care Capacity through Education across

Canada: The Pallium Canada Experience

Pereira J.^1,2,3, Downer K.¹, Riordan B.¹, Teeple L.¹, Parsons G.¹, Drake C.¹, Zebian B.¹, Tran H.¹, Pereira X.¹, Parsons H.¹, Carreira O.¹

1Pallium Canada, Ottawa, Canada; ²College of Family Physicians of Canada, Mississauga, Canada;

3McMaster University, Hamilton, Canada

Presenting author email address: jpereira@cfpc.ca

Background: Since 2001, Pallium Canada (a non-profit, government-funded organization) has been providing PalCare education for healthcare professionals across Canada. The last two years have seen significant scaling up and outreach.

Goals:Diffuse the Palliative Care Approach among non- palliative care specialists and carers, and accelerate the integration of PalCare in Canada.

Intervention:The Learning Essential Approaches to Palliative Care (LEAP) 1 to 2-day courses are interprofessional and competency-based. There are several versions for different settings; from community to emergency services, nursing homes and hospitals. Some are disease-specific (e.g., LEAP Renal). There are classroom, online and blended options.

Quality Improvement is integrated. They are supported by several products; The Pallium Portal (online learning management system for course and learner registration and downloads), a Facilitator Training Program and Pallium Pocketbook and APP. Subject matter experts from across

Canada develop the courses using an iterative process that includes peer review.

Results: From April 2014 to March 2015, 43 courses were held across Canada (897 learners). This increased to 205 in 2015/2016 (7,867 learners). From November 2014 to March 2016, 3,555 nurses, 1,707 physicians, 72 pharmacists, 1,271 paramedics and 195 social workers participated. There are 510 certified facilitators across Canada. Key partnerships include: the Ontario Renal Network and Nova Scotia Emergency Services. Over 30,000 books have been distributed. 89–98%

of participants recommend the courses to colleagues. Impact on knowledge, attitudes, comfort levels and commitment to change will be reported, as will the scalability model.

Lessons learned: It is possible to launch a national education initiative. The scalability model and impact on outcomes such as knowledge, attitudes and changes in practice will be presented. The next steps involve developing Compassionate Schools and Carers programs.

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EAPC Researcher Award Plenary:

Winner of the Post-Doctoral Award

Palliative Care for People

with Intellectual Disabilities:

An International Perspective

Tuffrey-Wijne I.

Kingston University & St George’s University of London, Faculty of Health, Social Care and Education, London, United Kingdom

Presenting author email address: i.tuffrey-wijne@sgul.kingston.ac.uk

People with intellectual disabilities make up 2% of the population. When they develop palliative care needs, the challenges for carers, professionals and service providers are enormous.

For the past 15 years, I have focused on researching this area.

What is it like for people with intellectual disabilities, and their families and carers, when they reach the end of life? Why is accessing palliative care so difficult for them? What are the issues? How can we do better – whether it is listening to their needs, or helping them understand what is happening, or assessing symptoms in people who communicate differently, or making end-of-life decisions, or finding ways to collaborate and organise services? Some of these questions need to be answered by people with intellectual disabilities themselves, and I have worked with them as informants, advisors and co- researchers – occasionally breaking the rules of research in order to make it accessible!

There is a growing international focus on the palliative care needs of people with intellectual disabilities. We set up the EAPC Taskforce on Intellectual Disabilities which developed consensus norms and best practice guidance, published as a White Paper in 2015. Another international project involved developing an agenda for research priorities for palliative care of people with intellectual disabilities in Europe. It is important to investigate the challenges in achieving best practice and find ways of addressing them. Much work is still to be done.

I am honoured and delighted to have won the EAPC post- doctoral researcher award, and look forward to sharing my research experience and findings.

Amanda Cresswell, my co-researcher with intellectual disabilities, will support me during my talk.

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Winner of the Clinical Impact Award

Dignity and Other Lessons from Portuguese Clinical Research

Julião M.

School of Medicine, University of Minho, Braga, Portugal Presenting author email address: migueljuliao@gmail.com

For the past seven years, I have been conducting research on several aspects of end-of-life psychosocial experience, mainly dignity, but also depression, anxiety, desire for death and demoralization.

The concept of dignity was always one of the central aspects of medicine. To think about the dignity is an imperative of modern medicine.

Dignity Therapy (DT) is a brief psychotherapeutic intervention, which provides patients an opportunity to convey memories, important disclosures and prepare a legacy. We conducted the first Portuguese randomized controlled trial, with the aim of studying the effect of DT on several psychosocial variables.

Our results were the first ever to show the efficacy of DT in several psychosocial variables in highly distressed terminally- ill patients.

Many other clinical research opportunities have emerged along this period.

Desire for death and demoralization within the context of palliative care have become prominent medical issues. Our group conducted the first Portuguese studies on the

prevalence of desire for death and demoralization and its clinical correlates.

Many lessons have been drawn from this path, mainly on the fields of dignity and the precious need for dignity conserving care.

Clinical research has elaborated a profound change in my personal world view. This change can be conveyed via some simple principles:

●Be humble – nothing is more important than people’s needs and wishes.

●Be watchful and curious – research opportunities are all around us.

●Adapt clinical research to people’s needs – simple research can be the best research.

●Don’t get overexcited and isolated from reality with data and numbers.

●Surround yourself with honest and morally good people.

●All research “belongs” to patients: without their

commitment and generosity, no study would be possible.

●Dignity should be the value, not a value.

●Finally, nothing can ever happen without the support of those that are attached to you through love – family.

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Winner of the Palliative Medicine Early Researcher Award

Cross-National Comparisons Today and in the Future

Pivodic L.^1,2

1Vrije Universiteit Brussel (VUB), Brussels, Belgium; ²KU Leuven, Leuven, Belgium Presenting author email address: lara.pivodic@vub.ac.be

Cross-national research is widely established in health services and health policy research, including the fields of palliative and end-of-life care. It is a way for us to reach important insights about end-of-life care practices in different countries. Cross- national comparisons also serve to generate hypotheses about links between health care policy and care delivered to patients.

Although much of cross-national research to date permits limited inference about the causes of observed differences between countries, over the past years it has led to empirical evidence that should inspire a response. This includes careful thought about and in-depth investigations of how particular countries organize palliative and end-of-life care.

This lecture will present: (1) the purpose, possibilities, and limitations of cross-national research as it has been

conducted in palliative and end-of-life care to date; (2) important insight gained from cross-national comparisons;

(3) how findings from cross-national comparisons can and should be used and followed up in research and policy- making; and (4) an overview of the questions that

cross-national comparisons in palliative and end-of-life care should seek to answer in the coming decade. The speaker will illustrate and elaborate on these points through examples of her own cross-national population-based research on specialist palliative care use, the quality of dying in care homes, hospital admissions at the end of life, and place of death. Ultimately, this lecture will present arguments for upholding cross-national comparisons as an essential element of research in palliative and end-of-life care.

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Parallel Sessions

PS01 Successful Innovation Strategies in Latin America in the Implementation of the WHA Palliative Care Resolution / Estrategias de innovación en Latinoamérica para la implementación de la Resolución de Cuidados Paliativos de la Asamblea Mundial de la Salud

PS02 Palliative Care: Complexity, Economics and Health Policy

PS03 Volunteer Delivered Interventions: What Are the Issues in Understanding and Measuring Outcome and Effect?

PS04 New Developments in Spiritual Care

PS05 Advances in Pain Management / Avances en el tratamiento del dolor PS06 Advances in Neurological Palliative Care

PS07 Education and Specialisation in Europe and Beyond PS08 Innovations in Psychological Interventions

PS09 Integrated Palliative Care Services: A Matter of Life and Death (InSup-C) / Servicios integrados de cuidados paliativos. Una cuestión de vida y muerte (InSup-C)

PS10 Thrombosis and Anticoagulants in Palliative Care

PS11 EAPC Research Network Session on Research Methodology PS12 The Role of Palliative Care Social Work in Europe

PS13 Optimal Advance Care Planning / Optimización de la Planificación Anticipada de Cuidados PS14 MRSA – Multiresistant Pathogens in End-of-Life Care

PS15 Palliative Care in Long Term Care Facilities in Europe: State of the Art (EU-funded PACE project) PS16 Update on Paediatric Palliative Care

PS17 Maruzza Foundation – Palliative Care for Older People: Understanding Frailty / Cuidados paliativos para personas mayores. Comprendiendo la fragilidad

PS18 Palliative Care for People with Heart Failure

PS19 Recognising and Responding to a Spectrum of Bereavement Needs PS20 Primary and Community Care

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PS01 | Successful Innovation Strategies in Latin America in the Implementation of the WHA Palliative Care Resolution / Estrategias de innovación en Latinoamérica para la implementación de la

Resolución de Cuidados Paliativos de la Asamblea Mundial de la Salud

ITES (Transforming the System Initiative): A Plan to Promote the

Undergraduate Teaching of Palliative Care in Latin-American Medical and Nursing Schools

Wenk R.

Fundacion FEMEBA, San Nicolas, Argentina

Presenting author email address: roberto.wenk@gmail.com

Introduction: All health professionals should be able to provide adequate assistance at the end of life; the WHO considers education one of the crucial aspects to implement Palliative Care (PC) in a country.

The International Association for Hospice and Palliative Care (IAHPC), the FEMEBA Foundation (Argentina) and the

University of Aachen (Germany) developed the ITES to promote the teaching of PC in undergraduate medical and nursing schools in Latin America.

Method: The ITES began in Colombia, and was developed in the following stages:

1. A visit to six universities to meet with deans, curriculum committees, teachers and students to know their perception and interest in PC (March 2014).

2. A workshop to determine in consensus the competences in PC in the undergraduate of physicians and nurses

(November 2014).

3. A workshop to display teaching models of PC and review technical aspects of teaching (December 2015).

Results:

In stage 1 the interest in the project became evident.

In stage 2 thirty-six people representing 16 medical and 6 nursing schools participated in a workshop to discuss and define through a consensus process, the PC competences for undergraduate level in both disciplines.

In stage 3 different technical aspects of teaching were evaluated and work was done in groups to design

undergraduate classes using the competences agreed in the second stage and the previously technical aspects analyzed.

The ITES generated interest, willingness to participate and enthusiasm among the participants. It motivated different universities to modify their curricula: at present 18 already did it using the competences identified, and others are in the planning process.

Conclusions: ITES helps each country to model this discipline curricula discipline according to the needs of patients and resources. ITES will be replicated in other countries of the Region: the development of stages 2 and 3 has been scheduled in Argentina in April 2017.

Parallel Sessions

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PS01 | Successful Innovation Strategies in Latin America in the Implementation of the WHA Palliative Care Resolution / Estrategias de innovación en Latinoamérica para la implementación de la

Resolución de Cuidados Paliativos de la Asamblea Mundial de la Salud

Projecto Lucy: Innovation in the

Financing and Provision of Palliative Care Services

Herrera Molina E.¹, Librada S.¹, Rodríguez Z.¹, Grajales M.², Doblado R.¹, Lucas M.A.¹, Jadad T.¹, De Lima L.³

1New Health Foundation, Sevilla, Spain, ²New Health Foundation, Vitoria, Spain, ³IAHPC, Houston, TX, United States

Introduction: In Colombia, 200,000 people die a year. The New Health Foundation (NHF) is a non-profit organization in Spain, dedicated to the promotion and implementation of palliative care systems, via implementation methodologies of excellence (NEWPALEX), that have shown effectiveness, improvement in palliative care and cost optimization. In 2014, NHF in collaboration with prestigious institutions and

organizations such as the IAHPC, launched the Lucy project to promote palliative care in Colombia.

Aims: To develop and implement a new national organizational model for end-of-life care.

Method:Creation of programs and resources for palliative care within care providers, redesigning financial models for services by insurers, stimulate the training of professionals and generate social awareness.

Results:

1) New political framework:Proposal for a national palliative care strategy with the National Cancer Institute in 2015. In

2016 NHF collaborated with the Cuenta de Alto Coste, an institution of major national authority, to establish a national model of mandatory compliance for every insurance company in the country.

2) Improve the service offerings through a new

management model:Based on the cost analysis of more than 20,000 terminal patients in Colombia and demonstration of the economic impact from its implementation, the Lucy project, according to the NEWPALEX® Method, created a management model for the country’s public and private insurers and service providers, that has proven to be tremendously efficient for the former and very economically profitable for the latter. Currently the model has been implemented in various insurance organizations that exceed the 15 million insured affiliates in the country.

3) Social awareness:Projects to create compassionate cities (Proyecto Todos Contigo) have been put in place for the purpose of involving citizens in providing care at the end of life in various cities including: Cali, Medellin, and now Bogota, Cundinamarca.

Parallel Sessions

Association for Palliative Care (EAPC)