Palliative care nursing: How the EAPC celebrated the International Year of the Nurse and Midwife 2020

Today, Dr Julie Ling, CEO, European Association for Palliative Care (EAPC) and PD Dr Piret Paal, Reader in Nursing Science (Palliative Care) and Deputy Director of the WHO Collaborating Centre for Nursing Research and Education at the Paracelsus Medical University in Salzburg, Austria, reflect and pay tribute to the authors who participated in a special series to celebrate the International Year of the Nurse and Midwife 2020.


Dr Julie Ling and PD Dr Piret Paal, series coordinators and contributors.

Although 2020 will be remembered as the year of the Covid-19 pandemic, it was also, importantly, the year that the nations of the world united to celebrate the benefits that nursing and midwifery bring to the health of the global population. The European Association for Palliative Care took this opportunity to celebrate the nursing contribution to palliative care through 12 very special monthly posts to honour the work of palliative care nurses. Ultimately, the advent of the global pandemic highlighted the innovative and important role of nurses working in palliative care and how they adapted their practice to make an important contribution.

When we planned the series of blogs to mark the International Year of the Nurse and Midwife 2020, we could not have anticipated how important nurses and nursing would become during the global pandemic. The catalyst for the series was the planned global celebration of nursing, initiated by the World Health Organization (WHO) at the 72nd World Health Assembly in recognition of the importance of nurses and midwives.

Over the past year, we have published blogs from nurses from around the globe covering a diverse range of topics. Each one offering a unique perspective on palliative care nursing and reflecting the evolution of nursing across the world.

Contributors (top row clockwise): Marius Čiurlionis, Rose Kiwanaku, Bart Cusveller, Bridget Johnston, Pablo Hernández-Marrero, Sandra Martins Pereira and Minna Hökkä.

Palliative care nurses and other healthcare professional colleagues have made a huge contribution in the fight against Covid-19. We acknowledge and pay our respects to the many healthcare colleagues who have lost their lives during the pandemic. According to the International Council of Nurses (ICN), more than 2,200 nurses globally have died, and more than 1.6 million healthcare workers have been infected by Covid-19.

The ICN has launched the countdown to International Nurses Day (IND 2021), which will be celebrated on 12 May 2021, with the theme “Nurses: A Voice to Lead – A Vision for Future Healthcare”. This coincides with a critical period in reshaping the WHO’s Global Strategic Directions for Nursing and Midwifery 2021-2025. We encourage all nurses working in palliative care to actively contribute to this strategy to ensure their voices are heard.

It has been a time like no other…

Throughout the pandemic those working in palliative care have been working closely with colleagues, sharing their experience and expertise in caring for complex symptoms and providing support at end of life.

Contributors: (left to right): Alexandra Mancini (Smith), Catherine Walshe, Anja Oustalet, Philip Larkin and Nicoleta Mitrea.

There was a plan that the very last post in our series on nurses would be written by Lord Nigel Crisp, Co-chair of Nursing Now, former Chief Executive of the NHS in England and Permanent Secretary of the UK Department of Health. Owing to ill-health, Lord Crisp was unable to contribute to the blog, but he did send this quote and we would like to leave the last words of this series to him.

“I have come to appreciate nursing and nurses even more in recent years when I have had the opportunity to see them working in many different countries and learn more about their work. Palliative care nursing exemplifies the remarkable qualities of the profession – the combination of care, compassion, knowledge and experience – and the ability to address the physical, mental, social and even spiritual aspects of a person’s health. I believe that nurses will continue to grow in profile and status in the years to come and play an even more influential role in health and wellbeing.”   Lord Nigel Crisp.

Finally, we would like to take this opportunity to thank all of our contributors (pictured above) who each provided a very unique and personal account of their palliative nursing experience.

If you missed any of these blog posts, you can access them in the special category ‘International Year of the Nurse and Midwife 2020’.


Contributors to the series 

Marius Čiurlionis: Lithuania – Head of Nursing, Palliative Medicine and Social Care Clinic, VšĮ Centro Poliklinika, Vilnius, and a founding member of the Baltic Palliative Care Association. Building the next generation of nursing leaders.

Dr Bart Cusveller PhD: The Netherlands – Associate Professor of Ethics and Spiritual Care in Nursing, Spiritual Care Research Institute, Academy of Health Care, Viaa Christian University of Applied Sciences Zwolle. Spiritual care requires spiritual care support: The link nurse.

Minna Hökkä: Finland – Research Unit of Nursing Science and Health Management, Medical Department, Oulu University, with Dr Sandra Martins Pereira PhD (Portugal) and Professor Pablo Hernández-Marrero (Portugal). Nursing competencies across different levels of palliative care provision: Highlighting the need for further research and international collaboration.  

Professor Bridget Johnston: Scotland, UK ­ – Florence Nightingale Foundation Clinical Professor of Nursing, University of Glasgow, and NHS Greater Glasgow & Clyde. How nursing history impacts on the modern day profession.

Rose Kiwanaku: Uganda – formerly Head of Education and Training, Hospice Africa Uganda, and founding Director of the Palliative Care Association of Uganda. Becoming the first palliative care nurse in Uganda. 

Dr Julie Ling: Ireland – (CEO EAPC) and PD Dr Piret Paal: Austria (Reader in Nursing Science (Palliative Care), and Deputy Director of the WHO Collaborating Centre for Nursing Research and Education at the Paracelsus Medical University in Salzburg). Nurses are the bridge of health care: Celebrating the International Year of the Nurse and Midwife 2020.

Professor Philip Larkin: Switzerland – Professor of Palliative Nursing, University of Lausanne. To comfort always: A message of inspiration for 21st century palliative care nurses.  

Alexandra Mancini (Smith), United Kingdom ­ – Pan London Lead Nurse for Neonatal Palliative Care at the Chelsea and Westminster NHS Foundation Trust, CW+ and the True Colours Trust, London. Palliative care for babies (neonates): Developing services

Dr Nicoleta Mitrea PhD: Romania – Director of Nursing Education and Development at HOSPICE Casa Sperantei and Senior Lecturer at University of Transilvania, Brasov. Are nurses becoming more influential in palliative care? A personal perspective from Romania.

Anja Oustalet: France – Nurse Manager in a pain and palliative care department in a public hospital in Paris. Nurses behind the scenes: The palliative care response to Covid-19 in Paris.

Professor Catherine Walshe: United Kingdom – Co-Director, International Observatory on End of Life Care, Lancaster University, and Editor-in-Chief of Palliative Medicine. Palliative care nursing and research: A call to arms to conduct nursing research.

References

International Council of Nurses (2021). https://twitter.com/ICNurses/status/1357003341100941312/photo/1

Posted in International Year of Nurse & Midwife 2020, NATIONAL & INTERNATIONAL REPORTS, Nursing | Leave a comment

Help us find the top priority questions in adult palliative care

Cochrane is a global independent network of people interested in health, including researchers, professionals, patients, and carers. Anna Erskine, Managing Editor of the Cochrane Pain, Palliative and Supportive Care (PaPaS) Review Group, explains how EAPC members and supporters can contribute to this important survey.


Anna Erskine, Managing Editor of the Cochrane Pain, Palliative and Supportive Care (PaPaS) Review Group.

We publish systematic reviews in the Cochrane Library to help people make informed decisions about health care. It’s really important to us that we focus our research on questions that are a priority to the community. That’s why we have launched this priority setting survey on adult palliative care and are asking for your help.

The survey

We want to hear from anyone with experience or an interest in this topic area. For example, patients and carers, healthcare professionals, researchers and policy makers.

The short survey comprises four sections:

  1. We ask you to rank our proposed priority questions in order of their importance to you.
  2. We ask you to add any other suggestions not on that list that you think are important, and explain your choices.
  3. We ask you to tell us of any other existing priority setting work that you might be aware of.
  4. We ask you to tell us a limited amount of information about you, and submit your responses.

The survey should take between five and 15 minutes to complete, depending on how much you want to say. It is available in three languages, and we have a team of volunteers to help translate the Spanish and Chinese responses into English. You can find the survey by following these links:

We encourage individuals, groups and organisations to complete the survey and anyone can share these links with their own communities and networks. Help us to develop trusted evidence that can really help guide and improve palliative care.

What happens next?

After the closing date of 28 February 2021, we will analyse all the responses and produce a final list of the top priority questions. This list will help us decide where new Cochrane Reviews are needed, and whether any existing reviews require updating.

You can find more information and project updates on our website. You can also sign up to receive updates via our newsletter, follow us on Twitter and Facebook, or contact me at anna.erskine@ouh.nhs.uk.


Additional information

This survey focuses on adults; priorities for children and adolescents will be addressed in a separate exercise. Your participation is voluntary and no payments are offered. If you have relevant financial conflicts of interest you may not be eligible to participate; for more information, see the Cochrane policy or contact us. We are unable to offer medical advice. Data will be retained on the SurveyMonkey website in line with their policy. Downloaded data will be anonymised and retained on password protected files and encrypted computers. Individuals’ data will not be shared with a third party.

Our funding statement: The Cochrane Pain, Palliative and Supportive Care Review Group (PaPaS) is funded by the National Institute for Health Research (NIHR) via Cochrane Infrastructure funding. The views expressed are not necessarily those of the NIHR or the Department of Health and Social Care.


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Understanding and addressing challenges for Advance Care Planning in the COVID-19 pandemic

NEW SERIES:  COVID-19 AND THE PALLIATIVE CARE RESPONSE…

Today, our guest writer is Andy Bradshaw, Research Fellow in Palliative Care at the Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, UK, who contributes on behalf of the CovPall study team, led by Professor Irene Higginson.

Andy Bradshaw.

In March, when the first national lockdown occurred, we all witnessed (and continue to witness) the tireless and selfless ways in which frontline workers adapted quickly and innovatively in responding to the pandemic. Having no clinical experience to offer, I felt like a spare part in the palliative care response to COVID-19.

Against this backdrop, I was extremely fortunate to be invited to contribute to the CovPall project. CovPall is a collaborative project with colleagues from King’s College London, University of Hull, Lancaster University, and the University of York. It aims to understand the multinational specialist palliative care response to COVID-19. To do this, we conducted an online survey of hospice and specialist palliative care providers. At the University of Hull, we focused specifically on the challenges experienced, and changes made to support, Advance Care Planning (ACP) during the COVID-19 pandemic.

ACP refers to ongoing discussions that take place between healthcare professionals and patients (and sometimes their trusted family members/friends) regarding the preferences that a person has on their future care. These are important to have because, when conducted well, ACP helps to facilitate a comprehensive and person/family-centred approach to a person’s care. Given that understandings of ACP during COVID-19 are dependent on the cultural and policy contexts in which they are conducted, we focused our analysis on the survey responses of 277 UK palliative and hospice care services.

The results of our study showed that the pandemic intensified some of the already-existing challenges to conducting ACP. These included:

  • Sharing information between services who used different electronic systems
  • Maintaining a personalised approach (particularly when discussing choices related to place of care/death).

Further contributing to these difficulties were COVID-specific challenges to ACP that were directly attributable to the pandemic, such as:

  • Conducting ACP in a national context of fear and uncertainty
  • National policies on social/physical distancing
  • Making complex decisions in the face of a novel disease
  • Communication difficulties (surrounding PPE and social/physical distancing)
  • An abrupt increase in workload and pressure.

In adapting to these challenges, services made changes to the ways in which they conducted ACP. Organisational/structural changes were also made to support ACP. These included:

  • Prioritising specific components of ACP conversations
  • Integrating ACP into everyday practice
  • Having discussions as early as possible
  • Using technology
  • Shifting resources to adapt to an increase in demand
  • Adapting fast through shared learning/collaboration.

In reflecting on these findings, the COVID-19 pandemic has brought into sharp focus the importance of having ACP discussions. Whatever adaptations are made, kept, or dropped as the pandemic continues and eventually passes, it is important that they facilitate high quality, person-centred ACP. This is by ensuring that the starting point of discussions is always the values and priorities of patients themselves, and tailoring ACP to a person’s ethnic, cultural, and religious needs.

The results of this study make the case for policymakers and service providers to urgently consider how these types of ACP discussions can be supported as part of standard care ahead of future or recurrent pandemic waves, and in routine care more generally.

View the full article in pre-print

This post relates to the longer article, ‘Understanding and addressing challenges for Advance Care Planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services’ (https://doi.org/10.1101/2020.10.28.20200725) by A Bradshaw, L Dunleavy, C Walshe, N Preston, R Cripps, MB Hocaoglu, S Bajwah,  M Maddocks,  A Oluyase,  KE Sleeman,  IJ Higginson,  LK Fraser,  FEM Murtagh.

Links and resources

Read more posts on the EAPC blog about Covid-19 and palliative care. Next in our line-up of Guest Writers to this series will be Adejoke O OluyaseResearch Associate at the Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, UK. Please email us if you too would like to contribute to the series. 



SUBMIT YOUR ABSTRACT TO 17 TH EAPC WORLD CONGRESS ONLINE – Abstract Submissions deadline: 28 February 2021.
APPLY FOR AN EAPC RESEARCHER AWARD 2021.
REGISTER FOR #EAPC2021.

 

Posted in Advance care planning, Coronavirus and palliative care | Tagged | Leave a comment

Children’s palliative care education standard framework and self-audit tool

Ahead of an international online launch on 25 February, Sue Neilson, Katrina McNamara and Duncan Randall (on behalf of  The Children’s Palliative Care Education and Training United Kingdom and Ireland Action Group – CPCET AG), unveil a new education standard framework and audit tool the group has developed to help people learn about children’s palliative care and to coordinate and improve education and training.

Left to right: Sue Neilson, Katrina McNamara and Duncan Randall.


There is a desire to do our best for children who are receiving palliative and end-of-life care. Yet our experience tells us that accessing children’s palliative care education and training can be difficult. Particularly for informal carers and those who work in palliative care, but who are not a part of professional disciplinary groups. There is very little standardisation which allow recognition of education and training across the sector.

Background

The UK All-Party Parliamentary Group on children who need palliative care (1) recommended that the guidance and competencies, proposed by numerous bodies and organisation, concerning children’s palliative care, needed to be aligned. In response to this recommendation, the need for a revised competency framework in the UK (2) was recognised as despite recommendations (1 – 4) no educational framework had been established across the UK. The CPCET AG was formed across UK and Ireland in 2019 with the aim of agreeing core principles of practice and standardising children’s palliative care learning. Members comprised champions from Institutes of Higher Education, clinical practice and third sector allied organisations.

Framework extends across Public Health, Universal, Core and Specialist levels

Our intention is that the framework does not regulate or limit education programmes, but provides a framework which we hope educationalists will want to use to coordinate and quality assure their programmes.

From Public Health to Specialist services

The framework extends across four levels: Public Health, Universal, Core, Specialist, and has been developed for use across all learning delivery settings and disciplines. The Public Health level addresses children’s palliative care as a community public health issue. The Universal level highlights what everyone working in institutions or facilities providing care and support to children who have palliative care needs and their carers should know. Core was designed to provide education standard to be used by various professional groups who work directly with children with palliative and end-of-life care needs. This group may also work with children with various other health/social and educational needs, but who regularly deliver direct care to children with palliative care needs. Finally, the Specialist level was designed to help those whose main work is the design, delivery and evaluation of children’s palliative and end-of-life care and who advise others on delivering care to these children and their carers (families).

These four levels can be seen as stand-alone or as incremental stages. People might require one or two levels for their role and work, or they may require all four if a specialist children’s palliative care practitioner. The levels are designed to be accessed by people from different professional backgrounds, or none.

The Pyramid approach to team learning

We encourage educators to design their courses using the Gabbay et al. 2014 (5) pyramid approach. This approach proposes that to improve practice, technical and soft skills have to be combined with learning as a team, each as a side of a pyramid, where each side has to be developed at the same time to build the pyramid. That over emphasis on one aspect will hinder the development of the pyramid, and the learning. Gabbay and his colleagues also point out that the pyramid has to be built on a secure foundation, in this case a sound institutional commitment to children’s palliative care with well-developed understanding and policies that are evident throughout the organisation.

How to access the framework and self-audit tool

We have developed a self-audit tool to enable programme leads to evaluate their course. The documents are housed on the International Children’s Palliative Care Network (ICPCN) website here: http://www.icpcn.org/training/childrens-palliative-care-education-standard-framework-and-self-audit-tool/A repository for completed self- audits can be also found on the ICPCN website; it is hoped a future review of these will inform best practice.

Join us at the international launch of the education standard framework The international launch of the education standard framework is on Thursday, 25 February 2021 at 13:00 GMT. Book your FREE ticket for this event here  (Or paste this link into your browser and register on the right-hand side of the screen):  https://www.eventbrite.co.uk/x/childrens-palliative-care-education-standard-framework-and-self-audit-tool-tickets-136931731495

We welcome feedback on the standards and are planning an evaluation of the framework and self-audit tool. Please email feedback to Sue Nielson.

References

  1. Cooper, J. (2018). End of life care: strengthening choice. An inquiry report by the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care. Available at: https://www.togetherforshortlives.org.uk/changing-lives/speaking-up-for-children/policy-advocacy/all-party-parliamentary-group-for-children-who-need-palliative-care/
  2. Downing, J., Ling, J., Benini, F., Payne, S., & Papadatou, D. (2013). Core competencies for education in Paediatric Palliative Care. Milano, Italia: European Association for Palliative Care.
  3. Department of Health 2016 Providing high quality palliative care for our children. A strategy for children’s palliative and end of life care 2016-26. Available from: https://www.health-ni.gov.uk/publications/strategy-childrens-palliative-and-end-life-care-2016-26.
  4. European Association for Palliative Care (2007). IMPaCCT: standards for paediatric palliative care in Europe. Eur Jour Pall Car, 14 (3), 109-14.
  5. Gabbay, J., Le May, A., Connell, C., & Klein, J. H. (2014). Skilled for improvement? Learning communities and the skills needed to improve care: An evaluative service development. London: Health Foundation.

 

JOIN US AT THE PAEDIATRIC PALLIATIVE CARE DAY at the 17th EAPC World Congress Online
SUBMIT YOUR ABSTRACT BY 28 FEBRUARY – abstracts on all aspects of palliative care are welcomed, including research, service development and improvement, audit and educational initiatives.

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Reflections to mark 50 years in palliative care: A trinity of patient care, education and training, and research

On 1 March, Robert Twycross, known internationally for his clinical work, teaching and writing, and a founding member of the European Association for Palliative Care (EAPC), will celebrate 50 years in palliative care.

To mark the occasion, the EAPC will present a FREE 90-minute webinar on Thursday 25 February 2021, where Dr Twycross will share some of the insights he has acquired over the last five decades. But first, ahead of the webinar, we’ve invited him to share a few key moments of a professional life, dedicated almost entirely to palliative care, that has impacted globally…

Dr Robert Twycross.

I transitioned from general medicine to palliative care in March 1971 when I took up the post of Research Fellow in Therapeutics at St Christopher’s Hospice in London, at the invitation of Cicely Saunders, the Medical Director and the founder of modern hospice and palliative care. In 1976, I moved to Oxford (my alma mater) to be Consultant Physician at Sir Michael Sobell House, a hospice on the campus of one of the University Teaching Hospitals. I remained there until I retired in the early 2000s, since when I have continued writing at home and teaching ‘on request’.

As I look back over half a century, I give thanks for an unbelievably rich and rewarding professional life during which I have been privileged to care for thousands of people with end-stage disease, taught innumerable medical students, doctors and others and, in the early years, conducted research principally into the use of morphine by mouth for cancer pain. Thus my career has comprised a trinity of patient care, education and training, and research.

I first met Cicely Saunders as a medical student in 1963. What she said in her lecture made an indelible impression on me and, after a gestation period of eight years, led to my change of direction in 1971. Since then, the world of palliative care has changed beyond recognition and into myriad shapes and sizes. In addition to the UK, I have been privileged to teach in 44 countries. I was involved in the WHO Comprehensive Cancer Control Programme and, with Professor Vittorio Ventafridda and others, authored its 1980s’ best-seller, Cancer Pain Relief, published in over 20 languages. Writing has been a constant throughout the 50 years with the Palliative Care Formulary being the ‘flagship’ publication since 1998.

St Christopher’s Hospice in 1971, at the time when Robert Twycross took up the post of Research Fellow in Therapeutics.

Readers may be surprised to learn that in the 1970s there were no morphine tablets – just solutions made up by the local pharmacy. Modified-release morphine tablets were developed in the mid-1970s, some years before immediate-release tablets. Syringe drivers crept in during the 1980s. Our understanding of neuropathic pain has increased steadily over the years, and many new drugs have been added to our drug armamentarium.

Palliative Medicine is now a recognized specialty in an increasing number of countries, and university departments have been established. However, there is much which is still to be done before we are able to deliver ‘palliative care to all who need it’ – in some countries it is still virtually non-existent.

Although I rejoice in the progress made, I am painfully aware that there are many ongoing challenges for the present and next generations. There is still antagonism within the medical profession in some countries. The values of the wider ‘Health Industry’ – competition, rationalism, productivity, efficiency, and profit – are incompatible with compassion and caring, two of the three main pillars of palliative care. Communication skills, certainly among doctors, are still often distressingly poor, and ‘attention to detail’ in pain and symptom management non-existent.

In the webinar, I will share some of the many insights I have acquired over the last five decades and look forward to responding to your questions. If you would like to ask a question, please submit this in advance to info@eapcnet.eu by Monday 22nd February at the latestafter you have registered for the webinar.


Join Dr Robert Twycross in this free, live webinar, Reflections to mark 50 years in Palliative Care: Pearls of Wisdom? Nuggets of Gold? Or just Base Metal? on Thursday, 25 February at 5 pm to 6.30 pm CET (4 pm to 5.30 pm UK). Please register here https://bit.ly/2OhirmR to secure your place. Places are limited and will be available on a first-come, first-served basis.


More about the author…
Robert Twycross is Emeritus Clinical Reader in Palliative Medicine, University of Oxford, UK. From 1988–2005 he was Head of the WHO Collaborating Centre for Palliative Care. He is co-author of several widely acclaimed textbooks, notably the Palliative Care Formulary (up to 6th edition 2017)  and Introducing Palliative Care (6th edition 2021). He has received numerous awards from professional organisations.

Read other posts from Robert Twycross on the EAPC blog: We can’t just stand by: Palliative care and training needs in the community of independent states and in Georgia, Ukraine and the Baltic countries and Sedation at the end of life.

Posted in INTERVIEWS & TRIBUTES, RESEARCH | Tagged | 2 Comments