Leaders, advocates and voices for change: a message about future nurse leaders.

For our Palliative Care and Public Health blog series, Philip Larkin and Sonja McIlfatrick reflect on palliative care nursing ‘facts of life’, nurse education and call for a reorientation of the way in which nurses see their role.


It is hard to envisage the world of palliative care without nurses. Nurses are the largest work force in palliative care, providing palliative care in varied settings and contexts. Their contribution to the evolution and legacy of palliative care is evident; a practice of treatment and compassionate care to address physical, psycho-social and spiritual need across the trajectory of living and dying.

A significant marker of the role of the palliative care nurse across many countries has been the shift to University based models of nurse education, where the focus is not only on competence in clinical practice but enhanced capacity for critical leadership and autonomous roles. Although the recently published EAPC report on nursing preparation for palliative care practice showed wide variation in palliative nursing education and training, it  also highlighted that clear guidelines and recommendations can influence decision-makers to see the value and importance of nurses for the delivery of high-quality and cost-effective care.

What does this mean for public health palliative care?  A careful reading of the components of the World Health Assembly (WHA) resolution 67.19  speak to the fundamental language of nursing; well-being, dignity and comfort, all of which frame good nursing practice. The resolution focuses on quality of life and the alleviation of suffering which nurses have a unique capacity to address through proximity to patients and caregivers on a 24-hour basis. However, the need for governments to ensure that undergraduate training programmes prepare all healthcare workers for the delivery of palliative care within the context of universal health coverage must also include nurses. The WHA resolution calls for a reorientation of health services and nurses have a key role to play in this.

However, we have to accept some ‘facts of life’ regarding palliative care. Current public health messages call for a generalist approach to palliative care, so what does that mean for how we educate future generations of nurses as the largest workforce in the discipline? Should the future focus of palliative care nurse education be towards the wider education of the many and the refocusing of the specialist education of the few towards roles of consultancy and clinical leadership? Secondly, what role can nurses play in challenging the social and political inadequacies which influence real choice and desire for palliative care by patients and families? Even in countries where there is relative economic stability and access to care, disadvantaged and vulnerable citizens regularly fail to get what they need because a) they are blocked by the system b) they believe they won’t be heard c) others (usually ‘expert’ clinicians) think they know better! Sadly, palliative nursing (as well as patient and caregiver voices) remains underrepresented and unheard at policy tables.

What we need now is a reorientation of the way in which nurses see their role in palliative care – as leaders, as advocates, as voices for change and reason and a repository of knowledge to support people to be part of the decisions made, not as the recipient of someone else’s benevolent care. If we truly support a public health approach to palliative care, then nurses need to be prepared to engage with communities as partners, not practitioners.  The forthcoming Public Health Palliative Care International Congress calls for a change in the democratisation of the care of the dying and grieving. This asks us to reflect on our public health palliative care actions as nurses to ensure that the next generation of palliative care nurses are well-prepared in how they can respond to informed communities as partners to help enable the optimisation of what palliative care can be.

Links and resources

  • Find out more about the EAPC Reference Group on Public Health and Palliative Care.
  • Read more about Public Health and Palliative Care on the EAPC blog.
  • The End-Of-Life Care research group is hosting the 7th international Public Health Palliative Care International conference ‘Democratizing caring, dying and grieving: participation, action, understanding and evaluation’. Bruges, Belgium, 20 – 23 September 2022. Find out more here.
  • The End-Of-Life Care research group Public Health & Palliative Care Research Summer School is taking place on 14 to 17 September 2022, in Ghent, Belgium.

About the authors

Phil Larkin is the Kristian Gerhard Jebsen Chair of Palliative Care Nursing, Department of Palliative and Supportive Care, University Hospital of Lausanne and the Institute of Higher Education and Healthcare, University of Lausanne. He has worked in Palliative Care for over 30 years and is past President of the EAPC (2015-2019).  ORCID: 0000-0001-8424-3920.

Sonja Mcilfatrick is Professor of Nursing and Palliative Care and Head of School of Nursing and Paramedic Science, Ulster University, Northern Ireland. Sonja is a current member of the EAPC Board of Directors and has worked in palliative care for over 20 years. ORCID: 0000-0002-1010-4300. Twitter @SMcilfatrick.


SAVE THE DATE! EAPC 18th World Congress 15-17th June 2023. Find out more here.

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Comics in Palliative Care: helpful or too confrontational?

We’re delighted to present this month’s ‘Editor’s Choice’ from Palliative Medicine, the official research journal of the EAPC. You can read the longer article in Palliative Medicine which EAPC members can access free from the EAPC website. Maaike Haan is a PhD student at Radboudumc in Nijmegen, The Netherlands, whose research looks at family caregiving in the last phase of life and on its visualisation in comic art for education and support.


Maaike Haan

Everywhere I show our graphic novel, people are positively surprised. Comics? In palliative care? Yes! To make the public outside academia more aware of family caregiver’s needs and moral dilemmas, we developed the 230-page Dutch graphic novel ‘Naasten(meaning ‘loved ones’ or ‘caregivers’ in English). My PhD supervisors, comics lovers themselves with bookshelves full of wonderful new worlds, were inspired by the idea that comics offer a window into the subjective lives of others. The combination of words and images allows comics to show what an experience feels like, enabling readers to better understand certain illness or caretaking experiences – perhaps more than written text can. Our comic book, specifically, shows what it can mean to take care of a partner or another family member who is terminally ill. Two storylines were scripted based on our in-depth interview research and, of course, the artists’ imagination and creativity – it was a privilege to work with comic artists Melanie Kranenburg and Niek van Ooijen on this project.

What we noticed is that the black-and-white pictures drew the most attention. ‘Horrible’, some people exclaimed, and ‘way too confrontational for families’. ‘Beautiful’, others stated, and ‘showing what palliative care really looks like’. I can imagine both these worries and appreciations. When I started my PhD project, I felt little acquainted with the comics medium and was almost intuitively drawn to softer tones and a bit scared-off by all too harsh drawings. But, along the way of my research, and having read multiple other comics and graphic novels, I am getting to know, understand and appreciate this world of comics better and better. It is such a powerful medium, with a remarkable talent to show lived experiences and make you feel like you were there. But, given this power, comics can simultaneously be quite direct, emotional, and therefore confrontational.

This ambivalence was also shown by our qualitative research findings. To investigate barriers and facilitators in using the graphic novel as a conversation aid in supporting family caregivers, we conducted training sessions, follow-up conversations and three evaluative focus groups. Participants included palliative care professionals and volunteers supporting those with palliative care needs who used the book in diverse ways in their contact with family caregivers. We also interviewed individual family caregivers to whom the book was presented by these healthcare professionals and volunteers. The respondents thought Naasten was recognisable, raised emotions, awareness and (in-depth) conversations, and could support bereaved caregivers; but the book was also reported to be potentially harmful due to its emotional impact, too directive in the conversation, or superfluous. We concluded that we should use comics carefully. Especially in contacts with currently caring family members, we would advise everyone to assure a right fit between the comic and what the family caregiver is or was experiencing; to gauge whether the family member has any affinity with the comics medium; to carefully introduce the book and offer a follow-up; and to make sure the conversation is directed by the family member.

In any case, and perhaps more than directly with patients and their families, our respondents suggested that comics could be used in an educational setting. It was also our experience that seemingly simple questions can evoke lots of conversations and thought. Just show a page or image to your colleagues, students or other healthcare professionals, and invite them to discuss together: what do you see? What does this image evoke? What does this image tell you about family caregiving, and about caregivers’ moral dilemmas and values? And what do you gain from this for your daily practice? In this way, discussing comics together may contribute to professional education and awareness, possibly more sensitivity for family caregivers’ needs, and thus tailored support. We hope to further investigate this educational value of our graphic novel in training settings.

Curious? Please have a look at some images of our book as shown in Supplemental File 1 of our original article.

READ THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’

We hope you’ll read the longer article in ‘Palliative Medicine’ – EAPC members can access a FREE copy from the EAPC website. ‘Facilitators and barriers in using comics to support family caregivers of patients receiving palliative care at home: A qualitative study’ by Maaike M Haan , Jelle LP van Gurp, Marjan Knippenberg and Gert Olthuis. First Published: Palliative Medicine, Volume: 36 issue: 6, page(s): 994-1005.

Images below from ‘Naasten’ of Geert caring for his wife and Eva caring for her father. ©Kranenburg, Van Ooijen & Haan (2019).

©Kranenburg, Van Ooijen & Haan (2019)
©Kranenburg, Van Ooijen & Haan (2019)

Links and resources

About the author

Maaike Haan (1988) is a PhD student at the IQ Scientific Center for Quality of Healthcare, Radboud University Medical Center, in Nijmegen, the Netherlands. She has a background in pedagogical sciences and philosophy of behavioral sciences and she did a postdoctoral program in ethics of healthcare. She also works for the ethics committee of an elderly care institution. ORCID: 0000-0001-8430-2564.

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 Members Area of the EAPC website, and the chance to download a free PDF of all ‘Editor’s Choice’ articles, as well as many other membership benefits. Just click here, enter your email address and membership password and choose from the list of journal articles for 2022.

Join, or renew your membership here. Members of our national associations can join the EAPC for free.


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Posted in Carers, EAPC-LINKED JOURNALS, EDUCATION & TRAINING, European Journal of Palliative Care, Palliative Medicine: Editor's Choice | Tagged | Leave a comment

Integrated Palliative Rehabilitation: ‘The problem is still the word palliative’- Palliative Medicine’s Paper of the Year Award.

We hope you enjoyed the EAPC 12th World Research Congress!  All congress content is available online for delegates until 30th September 2022. There were many highlights from #EAPC2022 but we particularly enjoyed the award presentations, which included Palliative Medicine’s Paper of the Year award. The winners were Lise Nottelmann and colleagues for their paper about integrated palliative rehabilitation.


Head and shoulders photo of Lise Nottelman
Dr. Lise Nottelmann.

I recently shared a conversation with nurse Grethe, who has been a key contributor in the development of the Palliative Rehabilitation offer at Vejle Hospital, Denmark, and still works as a facilitating nurse in the group program. We were talking about the fact that our publication ‘Early, integrated palliative rehabilitation improves quality of life of patients with newly diagnosed advanced cancer: The Pal-Rehab randomized controlled trial’ has been selected as Palliative Medicine’s ‘Paper of the Year’.

In the article we presented how a time limited and integrated palliative rehabilitation offer improved quality of life and emotional functioning for patients with newly diagnosed advanced cancer (1). Palliative rehabilitation has been suggested as “a paradigm which integrates rehabilitation, enablement, self-management and self-care into the holistic model of palliative care” (2).

The elements of the intervention which we tested were two consultations at a palliative outpatient clinic over a twelve-week period. Depending on individual needs identified during the initial assessments and follow up, patients were encouraged to participate in our twelve-week patient and caregiver education and discussion sessions combined with individually tailored physical exercise in groups. Supplementary individual consultations with physicians, nurses, physiotherapists, psychologists, occupational therapist, dietician, or social worker were also offered, if needed.

The program has since been fully implemented in the clinical setting of the palliative team in Vejle. I asked Grethe what she identifies as the greatest strengths and barriers of palliative rehabilitation in groups:

‘It’s remarkable’, she said, ‘how the patients often hesitate at first but once enrolled, they don’t want to let go again’.

‘Why do you think that is?’, I asked.                                                                           

‘Firstly, I see how they benefit from meeting others in the same situation’, Grethe replied, ‘They form quite strong bonds and enjoy the fact that they don’t have to explain or excuse themselves. Secondly, it really makes a difference when they feel their bodies getting stronger. It opens up new possibilities for the remainder of their lives that they didn’t foresee.’

‘But why the hesitation?’, I asked.

Grethe herself didn’t hesitate long before answering, ‘The problem is still the word palliative. It has this cloud of death hanging over it that patients don’t identify with until we explain it. But also, the patients are often quite humble. They think that others must be more deserving and more in need of our services’.

Grethe’s thoughts and experiences align with the findings of the study where we saw that about 25% of study participants didn’t express a need for help before meeting the palliative rehabilitation team. But of this group about two thirds ended up joining the group programme or getting more than the two mandatory consultations.  Almost all participants (93%) would strongly recommend the offer to others in the same situation regardless of their own initial perception of need (3). When I presented the results of the study to the Hospital’s Patient and Caregiver council, which had been acting as an advisory board throughout the process, they highlighted this as the most important finding of the study.

The selection as Palliative Medicine’s ‘Paper of the Year’ may hopefully generate additional attention to our model. On behalf of the author group and the clinical team, I therefore wish to thank Palliative Medicine for this great honour and recognition.

Catherine Walshe, Editor of Palliative Medicine, commented on the reason for choosing this paper:

“The judges felt this was a well conducted study on an important area. We particularly liked the way that the challenges of conducting a difficult study had been managed, with meaningful patient outcomes considered.”

References

1 Nottelmann L, Groenvold M, Vejlgaard TB, Petersen MA, Jensen LH. Early, integrated palliative rehabilitation improves quality of life of patients with newly diagnosed advanced cancer: The Pal-Rehab randomized controlled trialPalliative Medicine. 2021;35(7):1344-1355.

2 Hospice UK report, Tiberini R et al. Rehabilitative Palliative Care: enabling people to live fully until they die. 2015.

3 Nottelmann L, Jensen LH, Vejlgaard TB, Groenvold M. A new model of early, integrated palliative care: palliative rehabilitation for newly diagnosed patients with non-resectable cancer. Support Care Cancer. 2019;27(9):3291-3300.

About the author

Dr. Lise Nottelmann MD, PhD, Specialist registrar Public Health Medicine. She is currently training at Rigshospitalet, Copenhagen, Palliative team. Twitter: @LiseNottelmann. ORCID ID: 0000-0002-2900-3091.


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EAPC World Congress 2023 – submit your abstracts now!

Prof. Dr. Sandra Martins Pereira and Prof. Dr. Agnes Csikós, Co-Chairs of the Scientific Committee of the 18th World Congress of the European Association for Palliative Care (EAPC), invite you to submit your abstracts for this important Congress on the theme of Equity and Diversity in Palliative Care.


Dear Colleagues,

We would like to let you know that the abstract submission for #EAPC2023, the 18th World Congress of the European Association for Palliative Care, is now open.  The Congress will take place in Rotterdam, The Netherlands, from 15th to 17th June 2023.

The congress theme ‘Equity and Diversity in Palliative Care’ reflects the need to understand why and how inequities in palliative care occur, develop strategies aimed at reducing those inequities, and identify which challenges and policies could help to improve equity in palliative care. That is why determining the prominent factors in the cause of inequities in palliative care and deciding which ones are most amenable to change is paramount. The recognition of the conceptual frameworks and principles behind the genesis and manifestations of inequities in palliative care will help to decide upon the best strategies and policies to tackle this worldwide problem.

As an operational definition of inequity in health (and inequity in palliative care), we can adopt the definition proposed by the International Society for Equity in Health: “Inequity in health is the presence of systematic and potentially remediable differences in one or more aspects of health across socially, demographically, or geographically defined populations groups”. There is no basis for expecting a single characteristic or set of characteristics to be most influential in causing inequities in palliative care. Evidence suggests otherwise. To complement the understanding of equity in health and in palliative care, we brought in the term diversity in palliative care. The definition of diversity encompasses variety and the condition of being different or having differences. Rarely are diverse influences simultaneously explored in the literature to better understand and tackle plausible explanations for inequities in palliative care.

Why are we failing on equity in palliative care? Do we spend inadequately or inappropriately on palliative care provision? Why in a world now much more aware of the impact of the social determinants of health are the world’s most vulnerable persons still missing out? How can diversity help to understand and tackle inequities in palliative care? These are just a few examples of questions that will certainly become “food for thought” in Rotterdam. And we do need your input and contributions to foster these discussions.

The Scientific Committee is currently in the process of compiling an interesting and exciting congress programme. Focusing on the conference theme, eight plenary speakers will present on a range of topics.  A series of diverse topics has also been selected for parallel sessions. Nevertheless, as you all know, submitted abstracts will be a significant and important component of the programme.

Therefore, we would now like to invite all of you to the submission of abstracts for presentation at the congress. Abstracts can be submitted and proposed to be presented in two formats, either as an oral or as a poster presentation. As usual, the final decision about the format will be made by the Scientific Committee. All abstracts must be submitted using the electronic abstract system. Please note, in order for the scientific committee to develop the #EAPC2023 congress programme, the deadline for abstract submission is 15th October 2022.

Submit your abstract now!

The deadline for abstract submissions is 15th October 2022. Submit your abstract here.

We look forward to receiving your abstracts and to seeing you in Rotterdam!

Links

  • Read more about the Abstract Submission here. Submit your Abstract here.
  • Further information on #EAPC2023, the plenaries, and the parallel sessions is available on our Congress website.
  • Follow #EAPC2023 on social media!

SAVE THE DATE! EAPC 18th World Congress 15-17th June 2023. Find out more here.

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  • Submit your abstract now! Closing date 15th October 2022 for abstract submissions. Submit your Abstract here.
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Palliative Care and household poverty reduction: an interview with #EAPC2022 award winner Dr Jane Bates.

We hope you enjoyed the EAPC 12th World Research Congress! All congress content is available online for delegates until 30th September 2022. There were many highlights from #EAPC2022 but we particularly enjoyed the EAPC Researcher Awards. Awarded jointly by the EAPC and the EAPC Research Network, these awards recognise and support the work of scientists and clinicians in the field of palliative care who make an outstanding contribution to research and clinical practice. Today we are delighted to hear from the joint winner of the #EAPC2022 Early Research Awards – Dr. Jane Bates. Jane is Honorary Senior Lecturer at Kamuzu University of Health Sciences Family Medicine Department in Blantyre Malawi.


Head and shoulders photo of Dr Jane Bates
Dr. Jane Bates

Thank you for being interviewed for the EAPC blog!  Can you tell me what was your inspiration for a career in palliative care?

Arriving in Malawi in South Central Africa some years ago with an interest in holistic care for people living with HIV, I was pretty sure I didn’t want to work in palliative care. After all, why would I want to spend my time working in a speciality that was about death and dying when I wanted to help people to live with HIV? However, over time, through conversations with colleagues, attendance at an African Palliative Care Association conference and during further studies at the University of Cape Town, my perspective was reframed.  I was able to gain an understanding of palliative care towards that described by Dame Cicely Saunders as ‘helping people to live until they die’. 

From then on patients, their families and colleagues in Malawi have taught and inspired my clinical, teaching and research journey in palliative care.  I observed the responses to long awaited pain relief as households adjusted to news of their diagnosis.  By exploring person-centred communication across cultural and language divides and with improving access to immediate release morphine, I realised that far from being a ‘no-hope’ speciality, palliative care can support significant change in quality of life even in a context where many diagnostic and treatment avenues are unavailable.   

Can you tell us briefly about the research that has led to your winning this award and some of the main findings?

In clinical palliative care practice in Malawi, we observed that access to adequate pain relief enables patients and/or their family caregivers to return to income generating activities. Timely provision of patient-centred information about illness delivered by health workers to households can avoid or reduce the need for crippling out-of-pocket expenditure on non-beneficial care whilst maintaining or improving quality of life. Research data exploring observed links between palliative care and poverty reduction are currently sparce and this was the focus of my research. The findings are aimed at supporting strategic advocacy for expanded access to palliative care, particularly in low- and middle-income countries (LMIC), where services are either very limited or entirely absent. My hope is that where policy makers and funders see evidence that palliative care supports household poverty reduction it will lead them to prioritise funding for palliative care, supporting the goals of Universal Health Coverage.

Can you tell us about some of the creative ways that you’ve used insights from your work?

At the EAPC conference in Madrid in 2017, I shared a photographic exhibition from a Photovoice project exploring patient and family understanding of wellbeing and the role of palliative care in Malawi.  This year I’ve been working with an animator to produce a short film to summarise my research and findings, which I shared with the EAPC Congress.

What does winning the EAPC Early Research Award mean to you?

Most palliative care research comes from high income countries of the Global North. This award has given me the opportunity to present research from a very different setting which I hope will inform and broaden the perspectives of the EAPC community.  More funding guided by local priorities and perspectives is desperately needed to explore this area across a range of countries and settings.

If you had a magic wand, what is your ‘ideal world’ for palliative care?

Adequate funding and supportive academic environments for palliative care research from low- and middle-income countries. I self-funded my research supported by a lot of goodwill, numerous grant proposals and a crowd-funding campaign! To support integrated models of palliative care in LMIC we have to talk to people outside of our clinical and research areas including patients, families, colleagues, researchers, health economists, policy makers and other key stakeholders. We still have a long way to go to ensure that palliative care is understood as contributing positively to global health. 

Thank you for speaking with us today and letting us know more about your important research, and congratulations on your award.

Man using sewing machine
Image from Jane Bates et al Photovoice research where participants took photos and added a caption. Here JM writes ‘I received care from the hospital and from my guardian* and took proper cancer disease medication. I started working like before’ (*primary household caregiver in Malawi).

Two women sitting on the ground outside a house
Image from Jane Bates et al Photovoice research. Here EM, a carer, says ‘A patient needs courage to eat so that the medicines can work properly in the body and to have a healthy body’.                   

Links and resources

About the author

Jane Bates is Honorary Senior Lecturer at Kamuzu University of Health Sciences Family Medicine Department in Blantyre Malawi. She has lived in Blantyre Malawi for the past twenty years, developing clinical, teaching and research platforms in palliative care. After ten years in the clinical workplace at Queen Elizabeth Central Hospital she moved to the newly started Department of Family Medicine in 2013. She completed her mixed methods PhD at the Liverpool School of Tropical Medicine in 2021. Twitter @mjanebates. LinkedIn: Maya Jane Bates ORCID: 0000-0002-4459-837X.


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