To suffer the slings and arrows of outrageous fortune – researching resilience and spirituality

Today, we launch a new series on Spirituality and Palliative Care where we shall look at how people deal with crisis and suffering when confronted with life-threatening disease.

In this post, Lukas Radbruch and Cornelia Richter explain how a small group of academics at Bonn University, Germany, are researching the deeper meaning of resilience and how patients can be empowered to use it.

To suffer the slings and arrows of outrageous fortune (1)

Professor Cornelia Richter and Professor Lukas Radbruch.

There seems to be a real hype about spirituality in palliative care. No conference or workshop without a plenary on spirituality, and sometimes I (LR) have wondered whether this is an undue inflation of the term spirituality, which now encompasses everything that had been the realm of psychosocial discussions before. The European Association for Palliative Care (EAPC) social media team wants to take up this discussion on spirituality, providing some input on the range of issues related to spirituality in European countries and beyond, and hopefully triggering some discussion with the blog readers.

Resilience (similar to spirituality) has recently taken the spotlight in palliative care, but also in other areas of health care or society, but quite often without a clear understanding of what it means. So, it was really exciting when we came together some years ago in a small group of academics at Bonn University to discuss these issues of spirituality and resilience. This included some experts from the faculty of theology, together with expertise from philosophy, psychosomatic medicine, palliative care and spiritual care.

As usual in these interdisciplinary discussions between different scientific fields, we had to work on understanding each other and finding a common language first. As an example, the understanding of methods such as discourse analysis or grounded theory seems to be rather different in our different disciplines.

However, from the outset we had great fun in our research group and shared thrilling moments of sudden insight in exploring our common interest in how people deal with crisis and suffering, for example when confronted with life-threatening disease (even though this is a really serious topic). And we were really overjoyed when our research grant was approved by the German Research Foundation in April 2019.

Our joint project on ‘Resilience in Religion and Spirituality – enduring or constructing of Powerlessness, Anxiety and Distress’ (2) is starting now with eight work packages (https://gepris.dfg.de/gepris/projekt/348851031). We cover a wide range of topics. This includes analysis of resilience in praying, looking at lamentation as an expression of anxiety and confidence in an evaluation of the psalms. Other work packages will interview patients and caregivers in different settings, trying to find out how they are trying to cope with (health-related or other) crisis. All this should lead to a better understanding of resilience, and how patients can be empowered to use it. The work plan also includes the development of an assessment instrument, as well as a description of incommensurabilities (what cannot be assessed).

‘Resilience in Religion and Spirituality’ group with Professor Aileen Fyfe.

Pictured above is the first official presentation of the ‘Resilience in Religion and Spirituality’ group with Professor Aileen Fyfe, Professor of Modern History and Director of Research at the University of St Andrews, UK. As part of the group’s discoussion about gender equality in research, she gave the lecture “Being part of the scholarly community: Women in Research”.

The palliative care work package will look at resilience and its relationship to other prominent concepts in palliative care, such as sense of coherence, meaning or quality in life, or dignity. We will evaluate the literature with discourse analysis, and try to find out how much these concepts overlap, and what is distinguishing them. We will interview patients, caregivers and healthcare professionals to confirm our hypothesis on these concepts, how they interact and what they find useful for themselves.

The research group will perform the project work in the next three years. This is an exciting journey for us, thinking outside our specific boxes, getting new perspectives and learning from each other. Wouldn’t it be interesting to see whether the symbolic language used for lamentation in the biblical psalms is still being used by modern day patients?

Stay tuned for more information from our research group, and for more blog posts on spirituality!

 References

  1. The quote is from Shakespeare’s play Hamlet. In act 3, scene 1 Hamlet contemplates the pain and unfairness of life: “To be or not to be? Whether tis nobler in the mind to suffer the slings and arrows of outrageous fortune, Or to take arms against a sea of troubles, And by opposing end them…”
  2. Resilienz in Religion und Spiritualität – Aushalten von Ohnmacht, Angst und Sorge.

More about the authors…

Lukas Radbruch is Professor of Palliative Medicine at the University Hospital Bonn  and president of the German Association for Palliative Medicine.
Follow Lukas at @LukasRadbruch

Cornelia Richter is Professor for Systematic Theology at the University Bonn and chairs the Research Group on Resilience in Religion and Spirituality (DFG-FOR 2686). Follow Cornelia  @CRichter_Bonn

Follow our series on Spirituality and Palliative Care on the EAPC blog. Next week, we hear from Alain Ducq, a music and sound therapist from the Palliative Care Unit, Forcilles-Fondation Cognacq-Jay Hospital, France.

 

 

Posted in RESEARCH, SPIRITUAL CARE | 3 Comments

Winning posters from Berlin: Consensus building on health indicators to assess palliative care global development with an international group of experts

As we prepare for the 11th EAPC World Research Congress we are reminded that poster presentations are an essential cornerstone of every one of our congresses. We shall look forward to another batch of outstanding posters in Palermo but meanwhile bring you one of our winning posters from last year’s Berlin World Congress.

Natalia Arias-Casais and Eduardo Garralda, members of the Research Team at ATLANTES Research Programme at the University of Navarra, Spain, explain the background to their poster, which best exemplified the theme of the congress.

Natalia Arias-Casais and Eduardo Garralda.

During the last plenary of the EAPC World Congress in Berlin in 2019, we were surprised and honoured to discover that our research had been granted the award for the most relevant poster to the theme of the congress. This work was inspired by the need to address the monitoring and evaluation of global palliative care (PC) development at the national level.

We consider this a relevant field of research because despite the growing burden of PC need globally, it remains one of the most neglected fields on the global health agenda. For instance, while other health indicators for global strategies such as HIV/AIDS and non-communicable diseases are regularly implemented, consensus-based indicators for PC remain overlooked. This ignited our research question: What are the best national-level indicators to assess the progress achieved by countries towards improving access to palliative care?

We conducted a Delphi process with 24 international experts on the topic and delivered a list of 25 indicators organised by the domains suggested by the World Health Organization (WHO) Public Health Strategy for PC: education, policy, use of medicines and service provision. We presented them in the Brief Manual of Health Indicators for the Monitoring of Global Palliative Care Development, hoping that governments, ministries of health, policymakers and other stakeholders would use them to assess how PC is developing in each country of the world. Importantly, the indicators presented should be discussed for feasibility within each country or region before being implemented. The manual was presented as the first consensus-based list of indicators on the topic and has been endorsed by the International Association for Hospice & Palliative Care (IAHPC), Worldwide Hospice Palliative Care Alliance (WHPCA), International Children’s Palliative Care Network (ICPCN), African Palliative Care Association (APCA), Latin American Association for Palliative Care(ALCP) and European Association for Palliative Care (EAPC).

 

Award for ‘Most Relevant Poster to the Theme of the Congress’: Eduardo Garralda (centre) with Dr Libby Sallnow and Prof Dr Christoph Ostgathe. (Photograph Stefan Zeitz).

The indicators included in the Delphi derived from an exhaustive systematic review that identified all national-level indicators used on regional and global studies and assessed by frequency of appearance. Interestingly, the most frequently used indicators correspond to the four domains previously mentioned. However, very few indicators assessing PC integration into non-specialized provision (i.e. primary care) are scarce. Additionally, indicators for monitoring PC development for children are also lacking. The latest, points out emerging fields of research that have not yet been addressed.

We were delighted to have the opportunity to present our poster at the congress. It was a fantastic and rewarding experience and well worth the effort we had put into the study.

We would like to encourage other young researchers to give it a try and submit their posters to future congresses, to share the knowledge derived from research and to engage internationally with fellow researchers.

Links and resources

11th EAPC World Congress

Join us in Palermo 14 to 16 May 2020 for the 11th EAPC World Research Congress and view more outstanding posters. Register before 15 February to benefit from Early Bird discount, plus EAPC members get a further 25% off congress registration fees.

Authors of abstracts accepted for the 11thEAPC World Research Congress will be notified shortly.

Posted in 16th EAPC World Congress Berlin, ADVOCACY & POLICY, RESEARCH | Leave a comment

“End of life: Let’s learn to talk about it”: a MOOC end-of-life learning tool in French



Cliquez ici pour la version en français.

The French national information centre on end-of-life care has just launched a MOOC that aims to help the public and healthcare professionals have a better understanding of end-of-life care – it’s free and open to all. Caroline Tête, documentalist and MOOC co-coordinator, Centre national des soins palliatifs et de la fin de vie, explains.

Caroline Tête.

The Centre national des soins palliatifs et de la fin de vie (CNSPFV) was created in 2016 by the French government, primarily to provide a space where issues relating to the end-of-life could be discussed and developed jointly between the public and health professionals. The CNSPFV launched two national information campaigns in 2017 and 2018, and has created various digital tools, including the website www.parlons-fin-de-vie.fr (Let’s talk about end of life). In 2020, it is broadening its scope with aninnovativeonline information tool: the MOOC (Massive Open Online Course).

The MOOC, entitled La fin de vie: s’informer pour en parler (End of life: Let’s learn to talk about it) is in French and adapts the original functions of this tool to provide a simplified approach to a complex topic. Users of this MOOC, whether they are patients, family or friends, carers, volunteers or healthcare professionals, will be able to expand their knowledge and acquire an understanding of often hazy vocabulary, at their own pace and without time constraints.

This MOOC differs from classic information tools in that it allows for interaction between the information developers and online users, ensuring that the messages delivered are fully understood. The MOOC contains scenes of dialogue between a doctor and a patient. Five doctors from different specialities act out improvised scenes with two actors playing patients or family members. With commentaries from a doctor and a course instructor in palliative care, these scenes enable online users to appreciate the difficulties in talking about end of life, while still achieving a serene dialogue.

The MOOC provides an insight into the socio-political context of end of life in France,enabling online users to become fully acquainted with their environment. It also equips them with the right words for talking about and tackling end-of-life issues.The provision of services in palliative careis described allowing online users to identify and locate inpatient and out-patient palliative care services, as well as voluntary organisations in their area. Similarly, with the same intention of empowering service users, the MOOC explains in detail aspects of civil law specific to the end-of-life context, including rights, state benefits and compassionate leave.

Information to help deal with complex end-of-life situations when they occur is available. The public is frequently baffled by concepts such as unreasonable obstinacy, stopping or limiting treatment and the collegial procedure.These often-obscure terms are demystified in the MOOC. Likewise, it describes medical and non-medical treatmentsand focuses on the patient’s right to request continuous deep sedation until death, as granted by the Claeys-Leonetti law. The CNSPFV also wished to dispel fears around feeding and hydration (oral and artificial)by providing precise meanings for these terms, as well as clarifying the issues at stake when these measures are interrupted.

Finally, the MOOC offers insights into current issues in France and abroad, giving the online user a panoramic vision of the entire palliative care landscape: what has been done and what is still left to do.

Links 

 


« La fin de vie : s’informer pour en parler », un MOOC comme outil d’information sur la fin de vie 

Le Centre national des soins palliatifs et de la fin de vie (France) a lancé un MOOC qui vise à aider le grand public et les professionnels de santé à avoir une meilleure compréhension de la fin de vie – c’est gratuit et ouvert à tous. Caroline Tête, documentaliste et co-coordinatrice du MOOC, Centre national des soins palliatifs et de la fin de vie, nous en dit plus.

Caroline Tête.

Le Centre national des soins palliatifs et de la fin de vie (CNSPFV) est une structure créée en 2016 par le gouvernement français, afin, entre autres, d’encourager le dialogue entre les citoyens et les soignants. Pour mener à bien cette mission, il a lancé deux campagnes nationales d’information en 2017 et 2018, et développé des outils digitaux comme le site www.parlons-fin-de-vie.fr. En 2020, le CNSPFV franchit une nouvelle étape pour informer les citoyens en proposant un MOOC (Massive Open Online Course).

En détournant le MOOC de sa fonction de formation et en profitant de ses fonctionnalités, le CNSPFV innove pour évoquer un sujet complexe. Les internautes auront ainsi la possibilité, à leur rythme et sans contrainte horaire, de s’informer sur leurs droits, de mieux comprendre les enjeux de la fin de vie en France et à l’international et d’enrichir leurs connaissances et leur vocabulaire pour dialoguer avec les autres, qu’ils soient patients, proches, soignants ou bénévoles.

Contrairement à un outil d’informations classique, le MOOC offre l’avantage d’une interaction entre les concepteurs de l’information délivrée et les internautes. Il est donc possible de s’assurer que les messages diffusés soient compris et assimilés. Le MOOC contient des scènes de dialogue médecin/malade. Cinq médecins de spécialités différentes font face à l’improvisation de deux comédiens jouant des malades ou des proches. Ces scènes, commentées par un médecin formateur en soins palliatifs, permettent aux internautes de prendre conscience de la difficulté qu’il y a à parler de la fin de vie tout en leur montrant qu’un dialogue apaisé est possible.

Le MOOC donne le contexte socio-politique français sur la fin de vieafin que l’internaute appréhende l’environnement dans lequel il vit. Le dialogue étant une préoccupation majeure en fin de vie, la question des mots pour la dire est abordée. L’offre en soins palliatifsest décrite afin que chaque internaute puisse connaître les possibilités qui lui sont offertes autour de chez lui en termes de structures de soins palliatifs et de bénévolat d’accompagnement. Dans ce même souci d’information au plus près des citoyens, les droits, les aides financières et les congés relatifs à la fin de vie sont expliqués et détaillés.

Parfois, des situations complexes de fin de vie peuvent survenir. C’est pourquoi le MOOC introduit les concepts d’obstination déraisonnable, de limitation et arrêt de traitements et de procédure collégiale, termes souvent obscurs pour les citoyens. De même, le MOOC présente les thérapeutiques médicamenteuses et non médicamenteuses et se concentre particulièrement sur la sédation profonde et continue jusqu’au décès, nouveau droit accordé par la loi Claeys-Leonetti. Le CNSPFV a également voulu atténuer les peurs primales des internautes liées à l’alimentation et l’hydratation afin qu’ils comprennent ce que signifie l’alimentation et l’hydratation artificielles et les enjeux de leur arrêt.

Enfin, le CNSPFV a souhaité ouvrir le MOOC sur les questions en cours en France et à l’international afin que les internautes aient une vue d’ensemble de ce qui existe et de ce qu’il reste à faire en termes de fin de vie.

Liens

Posted in EDUCATION & TRAINING, En langue française, POSTS IN OTHER LANGUAGES | Tagged , | 1 Comment

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, International Year of Nurse & Midwife 2020, Nursing | Tagged | 2 Comments