Working towards an EAPC white paper on palliative care and emergency medical services: building consensus through collaboration and Czech dumplings

Posted on March 17, 2026 by pallcare

Emergency medical services are often the first point of contact in moments of crisis. For people with palliative care needs, these situations can be especially complex – for patients, families and emergency medical services clinicians alike. For today’s blog, Michala Chatrná from the EAPC task force on palliative care & emergency medical services tells us about the work underway by the task force.

ambulance moving at speed with flashing lights
Photo credit: Camilo Jimenez, Unsplash

Questions about goals of care, symptom control, decision making and respecting patients’ wishes frequently arise in settings where time is short and uncertainty high. That is why the intersection of palliative care and emergency medical services matters. Recognising this need, the EAPC task force on palliative care & emergency medical services was established to bring together experts who share a common goal: improving how emergency medical services respond to people with palliative care needs.

On a rainy Sunday in early November 2025, task force members from across Europe, Canada, South Africa and Australia gathered in Prague for a workshop aimed at developing a white paper with international recommendations on palliative care and emergency medical services. We spent two inspiring days discussing the topic in a group of experts, including representatives from the European Society for Emergency Medicine and the EAPC primary care reference group.

What stood out most was the people: a diverse group of professionals from different backgrounds and healthcare systems – yet with a shared purpose and commitment to improving care at some of the most critical moments in people’s lives. And what made the process particularly special was the way we approached the work: in person, with space for discussion and reflection, as well as the occasional disagreement. As one participant put it, ‘These few days in Prague have been a wonderful experience. If only all guideline development could be done this way!’

The main reason for our meeting in Prague was to work collaboratively on a white paper. The aim of this document is practical and forward looking – to offer guidance to support clinicians, services and policymakers in developing better, more coordinated approaches to care. Discussions during the workshop focused on key themes such as identifying people with palliative care needs in emergency situations, information sharing (including where people have expressed their advance care wishes), education and training, ethical challenges and the realities of decision making in out-of-hospital settings. The recommendations reflect both the available evidence and the group’s collective knowledge.

To capture some of the perspectives and energy from the meeting, we recorded a series of short videos with the group members. These offer personal reflections on shared challenges and why this work matters: ‘There is a growing recognition that EMS has moved beyond just providing an emergency response. We are here 24/7 and we can provide an urgent response now. So we are perfectly placed to respond in a palliative care crisis. But what that means is we have to now equip our clinicians in emergency medical services to make sure that we meet these patients’ needs.’ Georgina Murphy-Jones, co-chair of the EAPC task force on palliative care & emergency medical services.

The Prague workshop was an important step – but very much not the end of the journey. The white paper is now moving forward as we gather further expert feedback on the recommendations developed in Prague. We hope to present the results at the EAPC 2026 congress. And while the work is serious, it’s easy to remember the human side of the meeting: lively conversations, beautiful Prague views – and, yes, the occasional joke over traditional Czech dumplings, which some enjoyed more than others.

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Links and resources

About the author

Michala Chatrná is a project manager at the Center for Palliative Care, a Czech non-governmental organisation advocating high quality palliative care across different settings and coordinator of the EAPC Task Force on palliative care & emergency medical services. She is passionate about bringing together professionals from diverse backgrounds to share experiences and improve systems of care.

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Posted in ADVANCE CARE PLANNING, EAPC ACTIVITIES, EAPC Task Forces/Reference Groups, EAPC White Papers, Guidelines & Recommendations, PATIENT & FAMILY CARE | Leave a comment

Living long-term with incurable cancer: why a shared definition matters

Posted on March 3, 2026 by pallcare

For some people, an incurable cancer diagnosis does not mean that death is near – but it does mean living with uncertainty, which needs special support. For February’s Palliative Medicine editor’s choice Ruben Bouma tells us about a new framework to help identify this group and to make sure their needs are not overlooked.

Photograph of a dictionary page focusing on the word "definition" and its detailed explanation. Text is black on white paper.

Due to new treatments such as targeted therapies and immunotherapies, many people now live for years with incurable cancer. They and their families describe living in a ‘twilight zone’, where uncertainty persists and treatment and health needs fluctuate (1). Often, this group is not specifically addressed in oncological care pathways and their needs may be overlooked by oncology, primary and palliative care providers.

This ‘twilight zone’ experience raises a practical problem: without shared words, this group remains hard to recognise in clinical practice, research and policy (2). If we can’t name them, we can’t reliably identify who we mean, estimate how many people are affected, help identify their specific palliative care needs or compare research studies across settings.

In our recently published study, we therefore set out to develop a consensus based framework for people living long-term with incurable cancer. We wanted to define this group and identify the most appropriate terms to use and also explored perspectives on the concepts of ‘long-term’ and  ‘incurable’. We employed a modified hybrid Delphi approach, including patients, informal caregivers, researchers, healthcare professionals and other relevant stakeholders.

We reached consensus (88%) on how to refer to this group, which was patients/persons living long-term with incurable cancer. We explored preferences for patients versus persons, but no consensus supported exclusive use of either term, so both are acceptable. We used the Dutch word ‘personen’ which is translated to ‘persons’ and it was used as an overarching term (including words like people, individuals etc,) to acknowledge those beyond the patient role.

We also reached strong agreement (94%) on a practical definition. The framework includes people who live over two years with incurable metastatic cancer, incurable hematological malignancies or locally advanced cancer that cannot be cured. It also recognises a fourth group which are people who live exceptionally long for their specific cancer type, even if they do not meet the two year threshold (for example, someone living a year after a metastatic pancreatic cancer diagnosis).

A shared framework is more than just words. It helps oncology healthcare providers to recognise these patients and their informal caregivers earlier to have timely, honest conversations that can offer support for their needs and so fit with their lived reality. By clearly defining this patient population, our framework could support the development of clinical guidelines and policies tailored to them. Most importantly, it helps patients and families feel seen; by validating the ‘twilight zone’ experience that many people living long term with incurable cancer go through and helping to ensure that their needs are not overlooked. We see this framework as a starting point for today and the future, one that should be updated as treatments evolve. Ultimately, it can help improve care by guiding more coordinated, person centered support for people living long-term with incurable cancer.

READ THE FULL ARTICLE IN PALLIATIVE MEDICINE!

Bouma, R., Stegmann, M. E., Raijmakers, N. J. H., van Zuylen, L., Reyners, A. K. L., van Asselt, K., van Gastel, M. D. A., Brandenbarg, D., & Geerse, O. P. Defining patients living long-term with incurable cancer: A modified hybrid Delphi study. Palliative Medicine (2026, volume 40, issue 2).

References

  1. Zwanenburg LC et al. Living in the twilight zone: a qualitative study on the experiences of patients with advanced cancer obtaining long-term response to immunotherapy or targeted therapy. Journal of Cancer Survivorship 2024;18:750–60.
  2. Stegmann ME at al. Improving care for patients living with prolonged incurable cancer. Cancers (Basel) 2021;13:2555.

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Catch up on other Palliative Medicine editor’s choice posts from the EAPC blog, including:

About the author

Ruben Bouma is a PhD candidate at the University Medical Center Groningen (UMCG) in the Netherlands. His PhD focuses on patients living long term with incurable cancer. In follow-up studies, his work aims to better understand this growing population, including their epidemiological characteristics, quality of life and care experiences, symptom burden and healthcare use. ORCiD: 0009-0005-7345-8906. LinkedIn: ruben-bouma.

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Posted in EAPC-LINKED JOURNALS, Palliative Medicine, Palliative Medicine: Editor's Choice, PATIENT & FAMILY CARE, RESEARCH | Leave a comment

Recognising and supporting informal carers in chronic respiratory diseases

Posted on February 17, 2026 by pallcare

Chronic respiratory diseases are among the leading causes of death and long term disability worldwide. These diseases could be seen as one of the most urgent, yet underappreciated, global health burdens especially as we have a rapidly ageing population and more people are likely to experience these diseases in older age. For the next in our blog series about carers, Alda Marques tells us the importance of carers helping people with chronic respiratory disease – and why these carers have been especially unseen.

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Photocredit: David Tett, Centre for Ageing Better

Informal carers are family members or friends who provide care, usually unpaid, to someone with a chronic illness, disability or other long lasting health or care need, outside a professional or formal framework (1). Similarly to people with dementia or stroke, approximately 70% of people with chronic respiratory diseases rely on informal care for daily assistance. This reliance increases as the disease progresses, especially as it can have many fast moving and unexpected declines (2). Therefore, caring for someone with a chronic respiratory disease is often a long and unpredictable journey: ‘It’s like being on a roller coaster’ as one carer told us. It is not simple, for example handling oxygen, ventilators and nebulisers, and it can be frightening when people are experiencing breathlessness. Carers provide a wide range of physical, practical, emotional, spiritual, social and informational support to people with chronic respiratory diseases. Although many positive experiences of caring have been reported, these multiple responsibilities place a significant burden on informal carers and can negatively impact their health and well-being (3). Without support, their ability to take care of themselves and provide care for the person with chronic respiratory disease may be at risk.

Informal carers support is invaluable, and they provide essential support which health and social systems rely on.  Yet they are largely invisible in the respiratory disease research literature, in guidelines and health professionals’ practice, leaving them feeling isolated, neglected and unsupported. This underrepresentation limits health professionals’ recognition of informal carers’ key role and, as a result, hinders the timely identification of carers, their experiences and needs, and the delivery of support tailored to those needs. It also slows the development of research on meaningful care in chronic respiratory diseases.

Involving carers in the development of respiratory related guidelines and statements issued by international societies is now recommended, with carers being directly involved in shaping the content and included in authorship. We have, therefore, started the journey towards recognising the importance of, and the need to support, informal carers by making them visible in respiratory statements and guidelines, and by recommending palliative care involving informal carers for people with chronic respiratory diseases (2,4). Further developments are expected soon with the European Respiratory Society (ERS) taskforce statement on informal carers of adults with chronic respiratory diseases.

Supporting informal carers is a shared responsibility, and each of us as health and social care professionals, has a role to play. Informal carers are a forgotten workforce; identifying and acknowledging them, assessing their needs and empowering them will benefit not only the carer but also people with chronic respiratory diseases, healthcare professionals and society as a whole. The ERS taskforce statement will be a first step towards implementing transformative and meaningful actions that will drive a muchneeded paradigm shift in the management of chronic respiratory diseases and in the development of carer friendly (and supportive) societies.

References

  1. OECD. Health at a Glance 2023: OECD Indicators, OECD Publishing, Paris. 2023.
  2. Janssen DJA et al. European Respiratory Society clinical practice guideline: palliative care for people with COPD or interstitial lung disease. Eur Respir J. 2023;62(2).
  3. Marques A. Pulmonary rehabilitation and family/friend caregivers: the hidden reciprocal relationship improving outcomes in chronic respiratory diseases. Expert Rev Respir Med. 2024;18(10):745-57.
  4. Sullivan DR et al. Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement. Am J Respir Crit Care Med. 2022;206(6):e44-e69.

Links and resources

Find out more about the work of the EAPC’s reference group for family carers.

Recommended for you

Read more about carers in our EAPC blog series, including Family caregivers matter in palliative care and Costs of informal care – a wake-up call.

About the author

Professor Alda Marques is a physiotherapist, full professor and researcher of the Institute of Biomedicine at the University of Aveiro, Portugal. She is chair of the European Respiratory Society taskforce statement on informal carers of adults with chronic respiratory diseases.  Her research interests are to explore how respiratory diseases affect people’s life and develop personalised non-pharmacological interventions (pulmonary rehabilitation, physical activity) based on comprehensive assessments to optimise meaningful care of people with chronic respiratory diseases and their informal carers. ORCiD: 0000-0003-4980-6200.

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Posted in ADVOCACY & POLICY, BLOG SERIES, Carers, Carers, OPINION PIECES, PATIENT & FAMILY CARE, RESEARCH | Leave a comment

The day the room changed

Posted on February 10, 2026 by pallcare

For our palliative stories blog series, Joshua Mascreen shares the experience of music therapy for children with life limiting illness – and for their parents.

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Photo credit: St.Jude India ChildCare Centre

The room had learned how to wait. It waited with parents who counted hours, with children who had learned patience too early and with silences that carried more than words ever could. Everyone sat in a circle. The parents stayed close. Children watched carefully. Nothing looked different that day except for the drum resting quietly in the centre, as if it too was waiting.

The people who brought it spoke softly. They were from Golden Butterflies, though no one announced it. They knew that sometimes the gentlest presence is the strongest.

The children came carrying more than their small hands should have to hold – fear they could not name, anger that startled even them. Their parents carried everything else: files, schedules, exhaustion, hope, love that never rested. No one asked or nudged them to explain.

This was Rhythms of Resilience.

One child reached out and touched the drum, softly, as if asking permission. The sound was small, but it stayed. Another followed, louder this time. Slowly, the room filled with rhythm, uneven, honest, alive.

For children who struggled to explain pain, fear, or anger, the drum asked no questions. It listened.

When words felt too heavy, rhythm carried what could not be spoken. Movement followed feet tapping, hands clapping, bodies remembering joy through action songs. Later, the music slowed. Breathing slowed too. Eyes closed. Children travelled in their imagination to places where hospitals did not exist.

Parents watched their children unfold in ways they had not seen before.
Some smiled.
Some cried quietly.
Some breathed more slowly than they had all day.

Gradually, they joined in singing, breathing and sitting close. For a while, they were not fixing or planning or worrying. They were simply beside their children, sharing sound and stillness.  Care was no longer something to manage, it was something to feel.

As the sessions continued, children recognised each other’s rhythms. Parents recognised themselves in one another’s silence. The group became a shelter. Illness remained, but it no longer stood alone. In its place was connection, expression and a strength that did not shout.

Rhythms of Resilience did not promise healing. It offered something just as vital, a space where children could be heard, parents could rest and care could be deeply human.

And sometimes, healing begins the moment a room learns how to listen.

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Links and resources

Find out more about the work of Golden Butterflies Children’s Palliative Care Foundation.

About the author

Dr Joshua Mascreen is a medical & psychiatric social worker and head of training & advocacy at Golden Butterflies Children’s Palliative Care Foundation, Chennai, India. His work focuses on psychosocial care, expressive interventions and capacity building within paediatric palliative care settings.

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Posted in BLOG SERIES, NATIONAL & INTERNATIONAL REPORTS, OPINION PIECES, Palliative stories, PATIENT & FAMILY CARE, PSYCHO-SOCIAL ISSUES, The Arts in palliative care | 1 Comment

‘Being’ close to death: reflections on presence, care and professional identity in palliative care

Posted on February 3, 2026 by pallcare

Palliative care professionals work in a unique environment where dying can be part of everyday life.  For January’s Palliative Medicine editor’s choice, Mateus Eduardo Romão and Serena Barello reflect on their recent research where they interviewed fourteen Italian palliative care professionals from nursing, medicine and allied health  working in community based services to see the impact their work has on them professionally and personally.

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Image credit: AI image from Canva

Working in palliative care means living close to death, not occasionally, but every day. Death enters conversations, clinical decisions, family meetings, silences and farewells. Over time, it becomes part of the ordinary landscape of work. Yet we rarely pause to reflect on what this sustained proximity asks of the professionals who work there.

Closeness to death is often discussed in terms of risk to the professional. Emotional exhaustion, burnout, compassion fatigue and secondary traumatic stress are real and well documented. But what stood out in our interviews was something frequently invoked yet rarely explained: what it means to be with dying and how this ‘being’ is not a soft add on to clinical work, but central to palliative care professionalism and to how professional identity is formed.

Across participants’ accounts, ‘being’ was not passivity or simply ‘being kind’. It was described as an active, learned way of being with patients and families, with three intertwined dimensions: presence (staying with patients and families in uncertainty, silence and distress without rushing to fix or fill the space), ethical engagement (holding responsibility, dignity and respect when cure is no longer the goal, and when care becomes accompaniment as much as intervention), and emotional attunement (recognising emotions – others’ and one’s own- without becoming detached or overwhelmed).

For many professionals, this competence developed gradually, shifting the focus from doing to being with: remaining present during difficult conversations, in silence, during dying and in the moments that follow. Presence came to feel like professional competence, learned through experience, reflection and with supportive teams, rather than captured fully in protocols. As one participant said ‘Professionalism in palliative care is not only about prescribing the right medication, but about knowing how to connect with people, how to listen, understand and be available.’ Participants did not describe these dimensions as extra skills added onto a clinical role. They described them as a significant part of the role itself, shaping identity to be less as ‘what I do’ but more as ‘how I am’ with others at the end of life.

Working close to death also reshapes relationships with caregivers. Families become companions in a shared, fragile space. Anger, denial, withdrawal or a need for control may be less ‘problems to solve’ than experiences to meet with steadiness and care. Being with families often means resisting emotional shortcuts, neither judging their reactions as ‘wrong’ or ‘abnormal’ nor withdrawing when conversations become difficult but staying available in ways that are compassionate and professionally bounded.

If proximity to death shapes professionals, then making space for that transformation cannot remain an individual responsibility. In practice, it means treating presence and emotional labour as clinical work: providing protected time for reflection and debriefing, access to supervision and to team cultures where uncertainty and grief can be named without stigma. It also needs action in education and workforce policy: embedding relational and end of life competencies in palliative care curricula and continuing professional development as core outcomes. It means ensuring staffing models and service targets allow time for relational care, alongside minimum standards for supervision and reflective practice, so that the heart of the work is acknowledged, taught and protected.

READ THE FULL ARTICLE IN PALLIATIVE MEDICINE!

EAPC members can access a FREE copy from the EAPC website by logging in here.

Mateus Eduardo Romão, Ilaria Setti, Michela Monaci, Elena Cavallari, and Serena Barello. “One must know things, but above all, one must know how to be”: An Existential–Phenomenological Study of Professional Identity in Palliative Care” Vol 40, issue 1 Palliative Medicine 2026.

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Catch up on other Palliative Medicine editor’s choice posts from the EAPC blog, including:

About the authors

Dr Serena Barello, PsyD, PhD, is an Associate Professor of Health Psychology. She is the Co-Director of the WHYpsy Lab, where she leads the Health Psychology section in the Department of Brain and Behavioral Sciences at the University of Pavia, Italy. She also serves as the Rector’s Delegate for Research in the Social Sciences and Humanities. ORCiD: 0000-0002-8514-2563.

Mateus Eduardo Romão, PsyD, is a PhD candidate in Psychology and a member of the WHYpsy Lab, Department of Brain and Behavioral Sciences, University of Pavia, Italy. ORCiD: 0000-0002-8514-2563.

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Posted in EAPC-LINKED JOURNALS, EDUCATION & TRAINING, Palliative Medicine, Palliative Medicine: Editor's Choice, PATIENT & FAMILY CARE, RESEARCH | Leave a comment