New EAPC Reference Group on Family Carers – The International Palliative Care Family Carer Research Collaboration (IPCFRC) 

Professor Peter Hudson, Chair, and Professor Gunn Grande, Co-Chair, The International Palliative Care Family Carer Research Collaboration (IPCFRC) European Association for Palliative Care (EAPC) Reference Group, introduce the work of one of the EAPC’s newest reference groups.

Professor Gunn Grande and Professor Peter Hudson.

 

A core tenet of palliative care is that family carers should be offered optimal support from health and social care professionals. A new EAPC Reference Group on Family Carers – The International Palliative Care Family Carer Research Collaboration (IPCFRC) received official status in 2019 and aims to:

  1. Promote the development of high-quality research and scholarship to improve the wellbeing of family carers supporting patients towards the end of life.
  2. Provide a platform for international networking and collaboration.

Being formally recognized as an EAPC reference group is a major step forward for collaboration and awareness related to family carer related research. The EAPC is arguably one of the most influential palliative care entities in the world and this therefore allows for greater opportunities and exposure.

The reference group will focus on:

  • Providing a platform for international networking and collaboration.
  • Contributing to content within EAPC e-newsletters.
  • Seeking opportunity to host family carer seminars and meetings at EAPC congresses.
  • Developing an agreed upon core set of recommended outcome measures related to family carers.

Background

The IPCFRC was established in 2006 to promote research into evidence-based support for family carers of palliative care patients by fostering interdisciplinary and international research, establishing international partnerships and promoting information exchange.

The IPCFRC operates under the auspices of the European Association of Palliative Care and has been administered (“in kind”) by the Centre for Palliative Care (part of St Vincent’s Hospital and a Collaborative Centre of the University of Melbourne, Australia).

Achievements thus far

The IPCFRC has over 280 registered members from 36 countries of the world, including: Australia, Brazil, Canada, Denmark, France, Germany, India, Iran, Ireland, New Zealand, Nigeria, Norway, Spain, Sweden, South Africa, Thailand, UK and USA. Membership of the IPCFRC is free and is open to individuals and organisations around the world. Members are able to stay informed of sector news via the IPCFRC quarterly e-newsletter.  To join as a member and/or subscribe to the newsletter, click here

Since its inception, the IPCFRC has facilitated international collaborations and produced several key publications (https://www.centreforpallcare.org/page/104/resources-publications). The IPCFRC has also promoted family carer research in the field by hosting presentations, seminars and meetings at major international palliative care conferences such as the EAPC and the International Congress on Palliative Care (Canada). The IPCFRC was instrumental in the inception of the EAPC family carer taskforce (2010).

For any further information including about how to become a member please see our new web page on the EAPC website. 

More about the authors…

Professor Peter Hudson is the Director of Centre for Palliative Care, St Vincent’s Hospital & The University of Melbourne, Australia and Honorary Professor, Vrije Universiteit Brussel, Belgium.  

Professor Gunn Grande is Professor of Palliative Care, The University of Manchester, UK. Follow Gunn Grande @gunn_grande

Links

Posted in EAPC Task Forces/Reference Groups, PATIENT & FAMILY CARE, Social work | Tagged | Leave a comment

Promoting palliative care on the EAPC blog – our Top Ten posts for the first half of 2019

Here’s a special tribute to all the kind and committed people who spend hours ‘on top of the day job’ writing for the EAPC blog. Avril Jackson, social media lead for the European Association for Palliative Care (EAPC), unveils the people behind the most-viewed posts for the first half of 2019.

Avril Jackson.

With a vibrant membership and worldwide contacts, the EAPC has a knack of connecting people, skills and experience that coalesce in our congresses, task forces, reference groups, collaborative projects and, not least, our blog.

In 2019, we published 110 posts from people based in Europe (76.7 per cent), the Americas, Oceania, Asia and Africa. Together, these posts notched up 135,098 views with an average daily viewing of 371. Proof that the EAPC blog is a great place to share your work and for readers to catch up on some of the very latest thinking and personal reflections from practitioners, researchers, academics and others involved in palliative and end-of-life care in Europe and beyond.

So, based on the viewing statistics for the first six months of 2019, we are delighted to announce below the authors of the Top Ten most-viewed posts. Viewing statistics are cumulative throughout the year; thus, to ensure that posts published in the last part of the year are not unfairly disadvantaged, we will publish the results of the Top Ten most-viewed posts from July to December 2019 later this year.

Authors of some of our most-viewed posts of 2019: From top left clockwise: Mark Taubert, Eduardo Garralda, Geana Paula Kurita, Alissa Tedesco, Naheed Dosani and Robert Twycross.

Meet out Top Ten contributors
Just click on the title to read the post.

Mark Taubert, UK: Bringing palliative care to the public: The impact of social media. An interview with Mark Taubert winner of the 2019 EAPC Clinical Impact Award.  

Eduardo Garralda, Spain: New edition of EAPC Atlas of palliative care in Europe

Robert Twycross, UK: Sedation at the end of life.

Christian Goodwin (USA/UK) and Amara Nwosu (UK): Futurism in palliative care: An overview of the palliative care architecture and design symposium pads 2018

Daniel Stow, UK: What is the evidence that people living with frailty have needs for palliative care at the end of life? 

Carla Reigada, Portugal/Spain: APCP Social Work Task Force translates core competencies for palliative care social work in Europe into Portuguese

Geana Paula Kurita, Brazil/Denmark: Building a palliative care research career across borders: An interview with Dr Geana Paula Kurita, winner of the 2019 EAPC Post-doctoral award. 

Alissa Tedesco and Naheed Dosani, Canada: Harm reduction and palliative care: Meeting people where they’re at

Aileen Collier (New Zealand)and Ann Dadich (Australia): How to find and promote brilliant palliative care

Frédéric Guirimand, France: Continuous deep sedation until death: French recommendations.

More authors of our most-viewed posts in 2019: From top left: Carla Reigada and Portuguese Association of Palliative Care Social Work Task Force, Frédéric Guirimand, Amara Nwosu, Christian Goodwin, Daniel Stow, Aileen Collier and Ann Dadich.

We are honoured to have such a prestigious and diverse line-up of contributors who together represent ten countries spread across four continents. And we make no excuses for the fact that two of the above contributors are members of the EAPC editorial/social media team (Mark and Eduardo) – they really do go the extra mile ‘on top of the day job’ volunteering their time to be part of our team, as well as contributing to the blog in their own right.

 

 

 

 

Congratulations and thanks to the authors of the above posts, and to everyone who has contributed to the EAPC blog. Your hard work and willingness to share is an inspiration to us all.

And please do think about contributing to the blog yourself. Just check out our contributor’s guidelines here. Or contact the editor.

Links

Posted in 2019 most-viewed, SOCIAL MEDIA | Leave a comment

Searchlight: How a palliative care literature review shed light on a new career path

THIS MONTH’S EDITOR’S CHOICE FROM ‘PALLIATIVE MEDICINE’

Mary Scott is an MSc Candidate at the University of Ottawa and Research Assistant, Ottawa Hospital Research Institute, The Bruyère Research Institute, Ottawa, Ontario, Canada. Here she explains the background to her research study and longer article published in the January issue of  ‘Palliative Medicine’.

Mary Scott.

An eager anthropology undergraduate meets a successful clinical investigator and together they develop a plan to conduct a systematic review. So begins a search that has not ended.

Drs Peter Tanuseputro, Amy Hsu, Sarina Isenberg and colleagues identified a need for a review on effectiveness of palliative care after discharge in Ontario. Although palliative care is often discussed as an effective intervention that improves patients’ quality of life and other health outcomes, it was only recently recognised as a specialty. Peter and his colleagues have been exploring the impact of palliative care services over the past few years. Many patients transitioning from hospital to community settings at the end of life experience challenges with consistency of care plans and providers. This can be particularly burdensome given the often-increased healthcare needs of patients and their families during this period. Palliative care is considered a good approach to care that manages patients’ symptoms and supports patient-centred care plans. Recent evidence that there is lack of palliative care being delivered across Ontario was further reason to consolidate the evidence on how palliative care impacts the end of life after hospitalisation.

The study taught me that conducting a rigorous systematic review is quite tough. But it also taught me that health research could be an exciting venture for someone who is curious and creative, and could be very impactful when aiming to address issues within our healthcare system. This project was also personally exciting because I deepened my knowledge of my own father’s career as a palliative care physician, who was a key figure in its development in Canada.

This review was a pivotal experience for me. I am now pursuing a new career in research. This fall I began a Master’s programme in Epidemiology at the University of Ottawa. My proposed thesis is looking at physicians who provide house calls to those at the end of life and emerges directly from this initial project. I aim to identify physician-based factors that influence home visits in Ontario. This work will provide insight to policy and decision-makers on how we can redirect funding that bolsters community care and alleviates the overburdened acute care system. I believe the passion that I feel for research was fostered by the encouraging and supportive leadership on my research team. I am grateful I was provided the opportunity to make an impact on real people’s lives through gathering more evidence on an effective approach to end-of-life care.

Conducting this review ignited a personal desire to continue searching for answers to important questions in health care through scientific inquiry and evaluation.

DOWNLOAD THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’
This post relates to the longer article, ‘Does inpatient palliative care consultation impact outcomes following hospital discharge? A narrative systematic review’ by Mary Scott, Nicole Shaver, Julie Lapenskie, Sarina R Isenberg, Stephanie Saunders, Amy T Hsu, Peter Tanuseputro, published in Palliative Medicine 2020 Volume: 34 issue 1; page(s): 5-15. https://doi.org/10.1177/0269216319870649 Article first published online: 4 October 2019. Issue published: 1 January 2020.

Listen to a podcast with Mary Scott providing a personal interpretation of this article:  https://journals.sagepub.com/doi/suppl/10.1177/0269216319870649

EAPC MEMBERS – DOWNLOAD THIS, AND ALL OTHER ‘EDITOR’S CHOICE’ ARTICLES, FREE OF CHARGE
If you are currently an Individual or Associate EAPC Member you have full access to the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles and many other papers too.

Just click here, enter your email address and membership password and choose from the list of journal articles.

How to join as an Individual/Associate Member, or to renew your membership

Note: You can apply to be an Associate Member FREE of charge provided that you are a member of your country’s national palliative care association, and that the association is an EAPC National Association member.

Posted in EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, RESEARCH | Tagged , | Leave a comment

Nurses are the bridge of healthcare: Celebrating the International Year of the Nurse and Midwife 2020 #nurses2020 #midwives2020

For the first time ever, the nations of the world unite to celebrate the benefits that nursing and midwifery bring to the health of the global population. To mark this world first, the European Association for Palliative Care is delighted to launch a special series of 12 monthly posts to honour the work of nurses who work in palliative care and draw attention to several issues that are linked to this crucial workforce.

Today, Dr Julie Ling, with a background in nursing and currently CEO, European Association for Palliative Care (EAPC) and Dr Piret Paal, researcher and coordinator at the WHO Collaborating Centre for Nursing Research and Education at the Paracelsus Medical University in Salzburg, Austria, set the scene and give a sneak preview of what you can expect throughout the coming year.

Dr Julie Ling (left) and Dr Piret Paal.

It would be remiss of the EAPC, if we did not significantly mark the International Year of the Nurse and Midwife 2020. This global celebration of nursing was initiated by the World Health Organization (WHO) at the 72nd World Health Assembly in recognition of the importance of nurses and midwives, and their contribution to global health. The WHO has joined forces with International Council of Nurses (ICN) who are jointly aiming to draw attention to the changing face of nursing and ensure that nurses have a voice in policy making.  Coincidently, 2020 also marks the 200th birth anniversary of the world’s most famous nurse, Florence Nightingale.

From humble beginnings, in many countries, nursing has evolved into a well-respected profession, whereas, in some countries nurses still continue to struggle to gain the respect that they deserve. Issues such as poor pay, gender imbalance and high staff turnover continue to provide challenges for the nursing profession. Among many empowering initiatives, such as the Nursing Now Campaign and the Nightingale Challenge, the WHO has, for a first time, prepared an inaugural State of the World Nursing (SoWN) report, which will be released as part of the International Year of the Nurse and Midwife on 7 April 2020. The final section of the report, entitled: ’Forward-facing policy agenda for advancement towards 2030 targets’ will provide insights into future projections for nursing policy, implementation and research. One of these topic areas is palliative care. Ideally, implementation of the recommendations of the SoWN report will result in nursing in palliative care becoming a permanent part of country profiles. This would be a great help to monitor the developments in nurse-led palliative care practice.

Celebrating International Year of the Nurse and Midwife 2020…

Nursing provides a range of career options including the development of specialist roles. Undoubtedly, the appointment of clinical nurse specialists in palliative care in hospitals and community roles, caring for patients across the life span, has resulted in the development of palliative care services in many countries. Thankfully, many nurses continue to choose roles in palliative care.

In addition to nurses that are working clinically with patients every day, the transferable nature of the skills that are developed as part of nursing practice means that many nurses work in a range of roles in palliative care, that do not include direct patient care but where they can still make an impact. Opportunities to teach, conduct research, manage and to advocate for palliative care ensure that many nurses do not leave the profession, but contribute in a different way to the speciality of palliative care.

It is well documented that palliative care is a truly multidisciplinary specialty, and few could deny the significant impact that nurses have had, and continue to have, on the development of palliative care throughout Europe and beyond. To celebrate nursing throughout 2020, the EAPC has put together a range of important nursing contributors to write for our blog. Each month an invited contributor will focus on nursing from a range of perspectives. Colleagues who have so far kindly agreed to contribute include the following and we hope that others will join them:

Mr Marius Čiurlionis, Head of Nursing, Palliative Medicine and Social Care Clinic, VšĮ Centro Poliklinika, Vilnius, Lithuania.

Lord Nigel Crisp, Co-chair, Nursing Now Campaign, and Co-chair of the All-Party Parliamentary Group on Global Health, UK.

Prof Bart Cusveller, Professor of Nursing Ethics, Christian University of Applied Sciences Viaa, Zwolle, The Netherlands.

Prof Bridget Johnston, Florence Nightingale Foundation Clinical Professor of Nursing, University of Glasgow, Scotland, UK.

Prof Philip Larkin, Professor of Palliative Nursing, University of Lausanne, Switzerland.

Ms Alexandra Mancini, Pan London Lead Nurse Neonatal Palliative Care, Chelsea & Westminster Foundation Trust & The True Colours Trust, London, UK.

Dr Nicoleta Mitrea, Director of Education and Development – Nursing/Department of National Development and Education, HOSPICE Casa Sperantei, Romania.

Prof Catherine Walshe, Co-Director, International Observatory on End of Life Care, Lancaster University, UK, and Editor-in-Chief of Palliative Medicine, UK.

Celebrate the International Year of the Nurse and Midwife 2020 on the EAPC blog. Join us in February when Prof Catherine Walshe discusses ‘Why nurses should conduct research on nurse-led practices in End of Life and Palliative Care and publish their results’.

Links and resources

Posted in ADVOCACY & POLICY, Nursing | Tagged | 2 Comments

Research is fundamental to the future of palliative care. Want to help be part of that future at ‘Palliative Medicine’?

Catherine Walshe, Editor-in-Chief, ‘Palliative Medicine’, the research journal of the EAPC, is looking for someone to join the Editorial Board to help them shape the journal and its role in disseminating research.

Professor Catherine Walshe.

I happen to be firmly in the camp that believes that research, of all types, is fundamental to the future of palliative care. I guess that is unsurprising, given that my ‘day’ job at the International Observatory on End of Life Care at Lancaster University involves conducting research in palliative care, and my other role as Editor of Palliative Medicine involves research dissemination.

I believe that we need research to help us understand the knotty problems that confront us every day in our field, and develop better approaches to care at the individual, service, community and policy levels. Without great research there is potential for us to cause unintended harm, or to waste time with care not proven to be of benefit. Research itself can be wasteful. We know there is duplication of effort, time spent on research that may not be of benefit, and poorly planned and conducted research. Getting research right should be an international endeavour, focused on great questions that matter to people, excellent science, and appropriate dissemination that enables research to influence practice as rapidly as possible.

Will you help us shape the future of the EAPC research journal?

Journals, and their evolving roles, are an important part of this process, and need innovative thinkers to ensure that they are fit for purpose in this new decade and beyond. At Palliative Medicine, the research journal of the European Association for Palliative Care (EAPC), we are now looking for someone to join us on the Editorial Board to help us shape the journal and the way that we work to disseminate research. We have a vacancy for a new Editorial Board member to contribute to the strategic direction of the journal, write editorials, curate content and act as an ambassador for the journal.

We are proud, as a team, of the way that Palliative Medicine has developed over the years. We have a clear focus on publishing only the best of palliative care research internationally. We work hard to disseminate this research to ensure that it makes a difference to people, practice and policy. Hopefully you don’t only see our research in the journal or databases (but if you do it may be because of the way we focus on titles, keywords, abstracts and key statements), but also hear about it in our podcasts, or see it on Twitter, Facebook or Instagram. You will also see it here, on this blog, with the regular ‘Editor’s choice’ blog posts, which we know can be some of the best-read posts on the EAPC blog, with papers that are then freely available to EAPC members.

But what is next for Palliative Medicine?  Would you like to be part of our Editorial Board team helping us to continue to develop the journal to be the best it can be for the future world of research and practice? Then take a look here: https://journals.sagepub.com/pmj/job_description  and either have a chat with me, or submit your application by 29th February 2020.

Links

 

Posted in EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice | Tagged | Leave a comment

Abstract Watch: Current thinking on palliative and end-of-life care for patients living with intellectual and developmental disabilities

Barry R. Ashpole is a Communications Consultant, Educator and Media Specialist from Ontario, Canada, who contributes a bi-annual post to the blog. Here, he presents a selection of articles that focus on ‘current thinking’ on palliative and end-of-life care for patients living with intellectual and developmental disabilities.

 

Statue of Guanyin

Kong Meng San Ohor Kark See Buddhist Monastery, Singapore – Barry is in front of the statue of Guanyin, revered by Buddhists as the Goddess of Mercy.

End-of-life care in intellectual disability: A retrospective cross-sectional study

BMJ SUPPORTIVE & PALLIATIVE CARE | Online – 16 October 2019 – In this, U.K., nationwide population-based post-bereavement survey, the authors report on a population-based survey on the end-of-life care (EoLC). They note some positive experiences and highlight a number of areas for improvement. Health and social services seem to be enabling people with intellectual disability (ID) to stay in their usual residence at the end of their lives, but may not have been offered enough support at the actual time of death or give sufficient encouragement to care providers to involve people with ID in care planning where there is a capacity to do so. Since the population of people with ID is ageing (despite being markedly younger than the general population), multi-morbidity associated with age and frailty means that their EoLC needs are likely to increase in complexity over time. Care facilities and their staff must be supported and equipped to provide the complex care that these people need as they approach the end of their lives. Abstract

Development and applicability of a tool for identification of people with intellectual disabilities in need of palliative care (PALLI)

JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES | Online – 1 July 2018 – In this study from The Netherlands, the authors report on a screening tool for deteriorating health, indicative of a limited life expectancy of people living with intellectual disabilities. They describe development of PALLI and explore its applicability. The authors used a five‐stage mixed methods procedure to develop PALLI based on knowledge from practice. For exploring applicability, professionals caring for people with intellectual disabilities completed PALLI for 185 people with intellectual disabilities and provided information on applicability after 5-6 months. The final version of PALLI included 39 questions relevant for people with intellectual disabilities. Applicability was adequate: most professionals found PALLI relevant and reported no ambiguous questions. Added value of PALLI was reflecting on and becoming aware of the process of decline in health. Abstract.

Personal relationships during end-of-life care: Support staff views of issues for individuals with intellectual disability

RESEARCH IN DEVELOPMENTAL DISABILITIES, 2019; 87 (4): 21-30. Life expectancy for persons with intellectual disability has increased dramatically over the past decade, which has seen an associated rise in the need for end-of-life (EoL) care. However, little is known regarding how EoL affects the individual’s personal relationships with family, friends and staff. Interviews were undertaken with 35 disability support workers from four rural and two metropolitan locations in New South Wales and Queensland, Australia. Analysis identified three key thematic areas: 1) Relationships with family, relationships with friends and staff roles; 2) Relationships with friends had two sub-themes of “positive experiences” and “negative experiences”; and, 3) Staff roles had two sub-themes of “loss of contact” and “default decision making.” The frequency of family contact was not reported as increasing or decreasing following the diagnosis of a life-ending illness and during an individual’s EoL. A lack of counselling support was noted as potentially impairing the individual’s friends’ ability to cope with death. Staff also reported a number of concerns regarding how their relationships with the individual changed, particularly when EoL entailed potential movement of the individual with intellectual disability to a new residential setting. Abstract

The End-of-Life Care in People with Intellectual Disabilities & Dementia (ELCIDD) Project: An audit of end‐of‐life care in persons with intellectual disabilities and dementia

JOURNAL OF POLICY & PRACTICE IN INTELLECTUAL DISABILITIES, 2019; 16 (1): 88-92. With a rise in the life expectancy of people with intellectual disabilities in recent decades, there has been a related increase in rates of dementia. As a chronic, progressive condition, dementia presents opportunities for provision of pre‐planned end‐of‐life care (EoLC). This audit focussed on the level of compliance with pre‐defined EoLC standards for a group of patients with intellectual disabilities and severe dementia living in Leicestershire, England. Compliance with pre‐defined EoLC standards was found to be highly variable. Areas of high compliance included all 32 patients [i.e., patient population studied] having access to their primary care physician, 84% having regular review by their psychiatrist and 94% having had a review of their medication regime. In contrast, there was only clear evidence of patient involvement in advance planning for 25% of patients, with similarly few patients having agreement on the use of CPR, a plan for supporting their carers and/or family or a documented preferred place of death. Possible reasons for variable compliance include limited awareness of EoLC standards among intellectual disabilities professionals and carers, difficulties in discerning when patients are approaching the end of their lives and limited involvement of both the patient and palliative care professionals in decision‐making approaches. Full text

Advance Care Planning & Decision-Making

Palliative care for patients with communication and cognitive difficulties

CANADIAN FAMILY PHYSICIAN, 2019; 65 (Supp1): S19-S24. Pain and psychological and emotional distress are important issues for individuals with intellectual and developmental disabilities (IDD), as they can be difficult to assess and measure, and often present atypically, especially in those with limited communication skills. Further, little is known about end-of-life (EoL) needs in the adult population with IDD, especially for those living in community residences. The conducted literature review of patient, caregiver, and clinician experiences exposed considerable barriers, including incorrect assumptions about patients’ capacity to understand and discomfort of both caregivers and clinicians with open communication. This has resulted in exclusion of adults with IDD from their own care, which has proven harmful. Maximizing time in familiar surroundings and establishing trust and continuity are crucial. Sometimes trial and error with empiric use of comfort medications is necessary, but this can be mitigated with careful examination of distress patterns and judicious use of diagnostic testing. It is always best to integrate the palliative approach into the existing pattern of care. The validated tools and recommendations provided will assist with communication, symptom interpretation, treatment decisions, advanced care planning, addressing grief, and important considerations in EoL care. Full text.

Advance care planning in the palliative phase of people with intellectual disabilities: Analysis of medical files and interviews

JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, 2019; 63 (10): 1267-1272. For half of the people with intellectual disabilities (ID) who had died in this study from The Netherlands, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that advance care planning (ACP) was started in response to the person’s deteriorating health situation. A do‐not‐attempt‐resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life‐sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP. ACP in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care. Abstract

Placing the preferences of people with profound intellectual and multiple disabilities at the center of end-of-life decision making through storytelling

RESEARCH & PRACTICE FOR PERSONS WITH SEVERE DISABILITIES, 2019; 44 (4): 267-279. People with people with profound intellectual and multiple disability (PIMD) are living longer lives than ever before. Therefore, they are increasingly facing decisions relating to end-of-life (EoL) care and planning. Despite the increased attention that has been given to EoL planning, opportunities to have preferences responded to at the EoL are more likely afforded to people considered to have cognitive and decision-making capacity. Those supporting people with PIMD to plan for and make decisions about EoL care face several challenges. These challenges are rooted in difficulties with communication exchange between people with PIMD and their communication partners, leading to a widely held perception of decision-making incompetence for this population. The authors of this article, from the Deakin University, Victoria, Australia, and The Netherlands Institute for Health Services Research, draw on empirical research to discuss decision-making support within the context of palliative care and advance care planning, specifically for people with PIMD. It promotes decision-making support as an approach to assist supporters of people with PIMD to allow those people’s expressions of preferences to be acknowledged and acted upon at the EoL. The use of narrative is presented and discussed as a tool for enabling this responsiveness, specifically within the context of EoL planning. Full text.

Research

End‐of‐life care research on people with intellectual disabilities: Challenges for proactive inclusion in an Irish context

BRITISH JOURNAL OF LEARNING DISABILITIES, 2019; 47 (2): 70-76. In recent times, people with intellectual disabilities are increasingly included in research studies; however, their participation in sensitive research such as palliative and end‐of‐life care is less frequent. The reasons for not including people with intellectual disabilities in these kinds of research studies are issues in relation to obtaining consent, difficulty of recruiting, and engaging and collecting relevant information. Participants with intellectual disabilities were recruited at the University of Dublin by establishing a close relationship with service providers. Capacity to consent and informed consent were fostered by carefully explaining the research process through easy‐to‐read information, and the data collection process was successfully completed by having a person‐centred approach. People with intellectual disabilities can be successfully included in research. This is possible when their diverse needs are carefully considered, and appropriately developed protocols which meet their needs in relation to their capacities and abilities are utilised. This approach requires a flexible and inclusive research process. Abstract

Additional Resources

  1. ‘Special issue: Palliative and end-of-life care for people living with intellectual and developmental disabilities,’ Médecine Palliative, 2018; 17 (2): e51-e52, 61-128. Journal contents page. (All articles in French).
  2. ‘Talking End of Life …with people with intellectual disability,’ Australia. (An introduction to the online toolkit and links to many other resources for teaching people with intellectual disabilities about end of life).
  3. ‘Special issue: End of life and people with intellectual disability,’ Journal of Applied Research in Intellectual Disabilities, 2017; 30 (6): 977-1164. Journal contents page.
  4. ‘Advance care planning in palliative care for people with intellectual disabilities: A systematic review,’ Journal of Pain & Symptom Management, 2017; 54 (6): 938-960. Full text.
  5. ‘From disability rights to the rights of the dying (and back again), Laws, 2017; 6 (4): 1-17. Full text
  6. ‘Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care,’ Palliative Medicine, 2016;30 (5): 446-455. Full text
  7. ‘Literature review of best health and social care practices for individuals with intellectual disabilities encountering the end of life,’ Nursing & Palliative Care, 2016; 1 (5); 118-123. Full text
  8. ‘Developing research priorities for palliative care of people with intellectual disabilities in Europe: A consultation process using nominal group technique,’ Plos One, March 2016. Full text
  9. European Association for Palliative Care (EAPC) Reference Group on Intellectual Disability. One of the aims of this Reference Group is to monitor and promote implementation of the White Paper (see 6 above) across Europe, and to promote international research collaborations. Webpage
Barry Ashpole

Barry Ashpole.

More about the author
Barry R. Ashpole is a Communications Consultant, Educator and Media Specialist. He publishes Media Watch, a weekly compilation of international articles and reports in the fields of healthcare, social services, ethics and law. Barry also teaches frontline care providers about different aspects of palliative care and facilitates workshops on care planning. You can access Media Watch on the International Palliative Care Resources Center website.

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Do you have a ‘new palliative care dimension’ to bring to Helsinki in 2021? Call for parallel sessions now open!

Professor Fliss Murtagh, Chair of the Scientific Committee for the 17th World Congress of the European Association for Palliative Care, welcomes proposals for Parallel sessions at #EAPC2021.

Professor Fliss Murtagh.

We welcome you to join us for the 17th World Congress of the European Association for Palliative Care ‘Exploring new dimensions’– which will take place from the 20 to 22 May in Helsinki, Finland.

As we begin this New Year of 2020, it may seem that 2021 is many months away. However, the Scientific and Organising Committees are already hard at work planning for your EAPC 2021 World Congress in Helsinki, Finland.

We are shaping an exciting and innovative scientific programme. To help with this, the Scientific Committee are now seeking proposals for Parallel sessions from individuals, EAPC Task Forces, European Research Projects and other groups, for the congress programme. We invite you to propose the Parallel sessions that you would like to hear and contribute to. Do you have a new dimension, or a different approach, to present and discuss with colleagues?

We especially welcome proposals for Parallel sessions from new groups and individuals who have not previously applied, and the inclusion of speakers from outside of palliative care, where relevant.

Members of the Scientific Committee: #EAPC2021

How to apply for a Parallel session

All details about proposing Parallel sessions can be found at www.eapc-2021.org. The submission deadline is 5 pm on 31 January 2020. Please email the completed proposal form to scicom@eapcnet.eu.

We will assess in detail all proposals that are submitted, and select for inclusion based on the science and art of palliative care, and the overall range and balance of topics for the programme. We also take into account the evaluations completed by delegates of previous congresses.

Helsinki in festive mood.

Helsinki – the city that is really a village

Helsinki is a wonderful city. It sits on the shore of the Gulf of Finland, and has been described as ‘the city that is really a village’. That is absolutely right; it is welcoming, friendly, and accessible. The people are certainly forward-thinking and innovative, with some of the best technology, design, and shopping anywhere in Europe. Helsinki is easy to travel to, and easy to travel around; even I – not the most up-to-date with technology – managed to download the app and buy a train ticket in the time it took me to walk from the station entrance to the platform. I was also surprised to find it very affordable, both for travel and for daily expenses. The congress venue is excellent, and there are many added attractions in the city – come and join us in May 2021, and do take an extra day or two to explore this fascinating place if you can.

But most of all, we look forward to receiving your Parallel session proposals and welcoming you to Helsinki in 2021. See you there!

Save the date: 17th EAPC World Congress, Helsinki, 20 to 22 May 2021

Find out more here… and please submit your proposal for a Parallel session!

 

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