Why do people with lung disease suffer every day from chronic breathlessness?

The Better-B survey on chronic breathlessness aims to answer this important question in order to improve patient care. But more palliative care physicians are urgently needed to complete the survey. Currently, only 30 per cent palliative care specialists have responded vs. 70 per cent respiratory specialists. Małgorzata Krajnik (Poland), Claudia Bausewein (Germany), David C Currow (Australia) and Irene J Higginson (UK) invite all physicians working in palliative care or respiratory medicine to participate in the Better-B survey.

Top row, clockwise: Irene Higginson, Claudia Bausewein, Małgorzata Krajnik and David Currow.

When a person has to live day after day with disabling breathlessness and underlying cause(s) are maximally treated, that person faces a future termed “chronic breathlessness” – a distinct clinical syndrome.This, together with studies described in this post, has led to the development of the Better-B survey on chronic breathlessness and we would greatly appreciate your input to the survey by 31 July.

Arguably, symptomatic reduction of chronic breathlessness is a human right.2Why? Firstly, because the burden caused by this syndrome is debilitating for patients and distressing for their families. Secondly, due to the huge number of people experiencing breathlessness at rest or on minimal exertion, this is a global health issue. For example, 330 million people are living with chronic obstructive pulmonary disease. Thirdly, because there is growing evidence on the efficacy of individualised breathlessness plans with non-pharmacological and pharmacological treatments. Recently, Australia licensed regular, low dose, sustained release morphine (up to maximum daily dose of only 30 mg per 24 hours) for the symptomatic management of chronic breathlessness.

However, there are barriers to clinicians recognising and responding to people with chronic breathlessness as part of routine practice. A questionnaire survey conducted online among members of the Polish Respiratory Society (physicians working in respiratory medicine) showed people with COPD (Chronic Obstructive Pulmonary Disease) were less likely to be treated with opioids for the reduction of chronic breathlessness when compared to people with lung cancer.3

In this study, 80 per cent of physicians routinely used opioids to ameliorate breathlessness in people with lung cancer dropping to 32 per cent in people with COPD. More problems with using opioids for breathless patients with COPD were identified in older physicians, those who saw fewer people with lung cancer, and in those with poorer knowledge of Polish Respiratory Society guidelines on palliative care in lung disease. Another recent online survey involved both respiratory doctors in Australia and New Zealand and palliative medicine physicians in Australia, New Zealand and the UK.This study indicated significant differences between these two specialties in symptomatic approaches to managing people with chronic breathlessness syndrome in advanced COPD.

Meeting of the group during 16th EAPC World Congress in Berlin.

In response to these two studies, Better-B, an international consortium intending to improve the care of people with breathlessness and funded by the European Union’s Horizon2020, decided to explore the attitudes and practice when managing chronic breathlessness among respiratory and palliative care physicians from different countries. The questionnaire, prepared with help from experts from the European Association for Palliative Care and the European Respiratory Society, is an initial task in the Better-B project

It’s time for action – please complete the Better-B survey

We can no longer accept the presence of chronic breathlessness as an inevitable part of advanced disease. If you are a physician working in palliative care or respiratory medicine, please use the link to the survey at www.betterbreathe.eu  (follow the link to the Better-B newsletter) or the direct link for the survey: https://www.smartsurvey.co.uk/s/F3J2M/

Or you can scan the survey QR code. The survey is based on three brief case vignettes in COPD, lung cancer and interstitial lung disease (ILD).  

Your participation is crucial. We would like to know what you’re thinking when you see someone with chronic breathlessness and how we can improve the care of these patients in close collaboration of respiratory medicine and palliative medicine. Please, join us in this effort and complete the survey by 31 July 2019.

More about the authors
All authors participate in Better-B study, funded by the European Union’s Horizon2020.
Małgorzata Krajnik is Associate Professor in Palliative Medicine, Chair of Palliative Care, Nicolaus Copernicus University in Torun, Collegium Medicum in Bydgoszcz, Poland. She is a lead of WP1 (Better-B) dedicated to the survey among palliative care and respiratory physicians. Contact Małgorzata by email
Claudia Bausewein is Chair for Palliative Medicine at Munich University and Director of the Department of Palliative Medicine at Munich University Hospital. She is a lead of WP7 (Better-B) dedicated to the dissemination of the Better-B results. Contact Claudia by email.
David C Currow is Professor of Palliative Medicine at the University Technology Sydney and an investigator on the Better-B program. He continues to research many aspects of chronic breathlessness. Contact David by email.
Irene J Higginson is Director of the Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London and Chief Investigator for the BETTER-B study. Contact Irene by email.


1. Johnson MJ, Yorke J, Hansen-Flaschen J, et al. Towards an expert consensus to delineate a clinical syndrome of chronic breathlessness. Eur Respir J. 2017; 49: 1602277.

2. Currow DC, Abernethy AP, Allcroft P, Banzett RB, Bausewein C, Booth S, et al. The need to research refractory breathlessness. Eur Respir J.2016 Jan; 47(1): 342-3. doi: 10.1183/13993003.00653-2015.

3. Brożek B, Damps-Konstańska I, Pierzchała W, Barczyk A, Currow DC, Jassem E, Krajnik M. End-of-life care for patients with advanced lung cancer and chronic obstructive pulmonary disease: survey among Polish pulmonologists. Pol Arch Intern Med. 2019 Apr 30;129 (4):242-252. doi: 10.20452/pamw.4478.

4. Smallwood N, Currow D, Booth S, Spathis A, Irving L, Philip J. Differing Approaches to Managing the Chronic Breathlessness Syndrome in Advanced COPD: A Multi-National Survey of Specialists. COPD. 2018 Jun; 15(3):294-302. doi: 10.1080/15412555.2018.1502264.







Posted in SYMPTOM CONTROL | Tagged , | Leave a comment

Two crises at one time: Access to opioids for patients in palliative care in times of the US opioid crisis

Prof Dr Christoph Ostgathe, Dr Sébastien Moine, Dr Julie Ling (European Association for Palliative Care) and Prof Lukas Radbruch (International Association for Hospice & Palliative Care).

Clockwise, top row, left to right: Prof Dr Christoph Ostgathe, Dr Julie Ling, Dr Sébastien Moine and Prof Lukas Radbruch.

The USA ‘opioid crisis’ is a well-documented public health disaster and a human tragedy, (0) with complex causes and dramatic consequences on population health, both in terms of morbidity and mortality. A recent report by two members of the US Congress (1) may unexpectedly have contributed to worsen another (global) crisis, as the World Health Organization (WHO) has withdrawn two guidelines on the prescription of opioids for people with severe illnesses and palliative care needs.  This may result in many patients in dire need of opioids for pain relief no longer being able to access these medications.

In 2005, the World Health Assembly instructed the WHO Secretariat to work on better access to opioid analgesics through resolution WHA 58.22 on Cancer prevention and control. Around the same time, the UN Economic and Social Council made a similar request to WHO (Resolution ECOSOC 2005/25 on Treatment of pain using opioid analgesics). The WHO responded with the establishment of the Access to Controlled Medications Programme. Part of the programme’s activities aimed to provide guidance for better public-health policies and better pain treatment.

The need for the programme arose from the vast suffering among patients in many countries resulting from the limited access to opioids for the treatment of moderate and severe pain, and controlled medicines more generally required for conditions ranging from opioid dependence to epilepsy. Most countries have a much lower per capita consumption of opioids than the United States of America. In some, it is as much as 30.000 times lower.(2) In such countries the suffering associated with HIV/AIDS, cancer or other severe illnesses is often excruciating. Even in many European countries people still need to fight for adequate access to pain management.

On 22 May 2019, Katherine Clark and Hal Rogers, members of the US Congress, published a report on the development of WHO guidelines on policies and treatment in relation to controlled medicines and pain. (1) The report suggests that these guidelines are “marketing materials” for the pharmaceutical industry. This influence was, according to the report, achieved through named organisations and individuals, serving the interests of a pharmaceutical company, Purdue Pharma, the maker of OxyContin, a commercial brand of oxycodone.

On 20 June 2019, this led to the discontinuation of the guidelines Ensuring Balance in National Policies on Controlled Substances (3) and Who Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses (4) by the WHO. Additionally, the WHO stated that the guidelines have to be seen in light of new evidence on pain management. The WHO policy guidelines Ensuring Balance in National Policies on Controlled Substances (3) were part of an EU 7th Framework Programme Project. These guidelines were primarily developed for policy makers and clinicians. Ensuring Balanceprovides guidance on how to adopt balanced policies to ensure availability to, and rational use of all controlled medicines for legitimate medical needs, and not just opioids. (3) The WHO paediatric pain guidelines were an important step towards better treatment of persistent pain in children. (4)

We support the WHO in their endeavours to secure best possible evidence, and to safeguard guidelines from any possible conflict of interest. However, to discontinue the guidelines based on misleading information without current replacement will have a negative impact on patients in palliative care worldwide requiring opioids for symptom control. We recognise that non-medical use of prescription opioids, or opioid use disorder, (5) may happen in any country and thus underscore the importance of implementing basic mandatory training for all healthcare personnel for safe management and evidence-based prescribing of opioid analgesics. Indeed, the Ensuring Balance guidelines emphasise the importance of providing relevant healthcare staff with the knowledge and skills for using these medicines appropriately when introducing policies on accessibility and availability of controlled medicines.

Regarding the current US context, only focussing on prescription (by restricting the supply of prescription opioids analgesics) in order to tackle the opioid crisis presents a double risk: such a strategy may not be sufficient to lower opioid overdose deaths, since more people use illicit and synthetic opioids (such as heroin and fentanyl) and start opioid use with them. (6) In reality, these drugs are responsible for an increasing number of deaths, despite a decrease in opioid prescriptions. (7) This is one of the reasons why a public health approach with combined interventions, including harm reduction programmes and medication-assisted treatments (MATs), is urgently needed. (7, 8)

Furthermore, rules and regulations aiming to indistinctly restrict access to prescription opioid analgesics would have detrimental effects for the vast majority of patients with severe illnesses with legitimate palliative care needs, especially those living in low- and middle-income countries. For these patients, access to treatment for moderate and severe pain remains a major challenge. (9) The Lancet Commission on Palliative Care and Pain Relief estimated that less than 2 per cent of the opioids needed for palliative care patients are provided in low-income countries. (2) A lack of availability of such treatment is unethical and results in a global inequity and injustice.

As a reaction to these two crises, a Joint Position Statement on the Decision by WHO to Withdraw Guidance Documents has been published by the International Association for Hospice & Palliative Care (IAHPC), the International Children’s Palliative Care Network (ICPCN) and the European Association for Palliative Care (EAPC).

Within a few days of publishing, this statement has been endorsed by more than 100 associations worldwide. The WHO is urged to “revise and update the guidelines they have withdrawn with all deliberate speed, and until this task has been completed, to reinstate both the Ensuring Balance in National Policies on Controlled Substances and Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses to fill the normative and technical vacuum left by their withdrawal.”

We ask and advise all of our member associations to support this statement. We have to continue to advocate, educate and raise awareness, so that the needless pain and suffering of millions of adult patients and children with palliative care needs is relieved to the best extent possible in accordance with evidence-based quality and safety standards.


0. Lopez G, Frostenson S. How the opioid epidemic became America’s worst drug crisis ever, in 15 maps and charts. Vox2017 (https://www.vox.com/science-and-health/2017/3/23/14987892/opioid-heroin-epidemic-charts, accessed 17 July 2019).

  1. Clark, K and Rogers H. Corrupting Influence – Purdue & the WHO. 22 May 2019.
  2. Knaul, FM et al. Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report, The Lancet, Volume 391, Issue 10128, 2018
  3. World Health Organization. Ensuring balance in national policies on controlled substances, guidance for availability and accessibility of controlled medicines [Internet]. Geneva: World Health Organization; 2010. 78 p. Available from: http://whqlibdoc.who.int/publications/2011/9789241564175_eng.pdf?ua=1
  4. World Health Organization. WHO Guidelines on the pharmocological treatment of persisting pain in children with medical illnesses [Internet]. Geneva: World Health Organization; 2012. 166 p. Available from: http://whqlibdoc.who.int/publications/2012/9789241548120_Guidelines.pdf
  5. 5. American Psychiatric Association (APA). Opioid Use Disorder. APA website, November 2018 (https://www.psychiatry.org/patients-families/addiction/opioid-use-disorder/opioid-use-disorder, accessed 17 July 2019)
  6.  Chen Q, Larochelle MR, Weaver DT, et al. Prevention of Prescription Opioid Misuse and Projected Overdose Deaths in the United States. JAMA Netw Open 2019; 2: e187621
  7. American Medical Association [AMA]. The AMA Urges Removing All Barriers to Treatment for Substance Use Disorder. Chicago: AMA, 2019
  8. Csete J, Kamarulzaman A, Kazatchkine M, et al. Public health and international drug policy. Lancet 2016; 387: 1427–1480
  9. Cicero TJ. Is a Reduction in Access to Prescription Opioids the Cure for the Current Opioid Crisis? Am J Public Health 2018; 108: 1322–1323.









Posted in ADVOCACY & POLICY, EAPC Board Members, Opioid access | Tagged | Leave a comment

Lets think global, foster diversity and tackle inequalities in palliative care

A message from the recently elected President of the European Association for Palliative Care (EAPC), Professor Christoph Ostgathe, who is a palliative care physician and Chair of Palliative Medicine at the University of Erlangen, Germany.

Several weeks have passed since I met many of you at the tremendously successful EAPC World Congress in Berlin, Germany. With more than 3,000 participants, the 16th EAPC World Congress was the biggest EAPC event ever. It is a pleasure to see how this congress has evolved into a truly global platform for palliative care.

Prof Christoph Ostgathe who was elected President of the EAPC on 25 May 2019 at the 16th EAPC World Congress, Berlin.

At the congress, members of the EAPC elected a new Board of Directors and one of the first tasks of the board is to elect a president. I am honoured to say that they elected me as the President of the EAPC for the next four years. I am a palliative care physician and Chair of Palliative Medicine at the University of Erlangen, Germany. In accepting this new role, I realise that it is both a great honour but also a challenge and I am flattered that I have the trust of the board and our members. It was my intention to introduce myself in a blog post earlier, but a challenging issue presented itself as the first task of the new board. Recently, following a report by two US congress members, the World Health Organization (WHO) withdrew the WHO guidelines on opioid prescription and this important situation obviously required action from the EAPC Board. With our global palliative care partners, we have recently signed a statement (http://globalpalliativecare.org/who-withdrawal-of-guidance-documents/) related to this issue. In the coming days a blog post will be published here to ensure that our members are kept fully up to date.

Looking back and ahead

My experience and learning as an EAPC Board Member and Vice President over the past four years serves as a strong foundation for my role as President. I have learnt about different countries, cultures, and diverse approaches to, and resources for, palliative care in Europe and beyond. I have learnt about the global challenges of bringing palliative care into the heart of healthcare systems as part of universal health coverage and, most importantly, the impact of palliative care for patients and families. This has given me a much better understanding about the complexities and differences and what they mean for the work of a multinational association like our EAPC.

Since attending my first EAPC Congress in Palermo (2001), I have been involved in the work of the EAPC; as a congress delegate and speaker, as a scientific committee member, a task force member, and a board member. I was the Chair of the Scientific Committee for the 15th EAPC World Congress that took place in Madrid. The experience and insight gained in serving my apprenticeship means that I have a very good understanding of the working of the EAPC. And this gives me the confidence that I will be able to fulfil the role of President – enthusiastically, effectively and efficiently.

Professor Vittorio Ventafridda 1927-2008. Founding President of the EAPC from 1988 to 1995.

A tribute to our founders

In my new role, I humbly look back at all the people that have built up and developed the EAPC over the past  31 years. Many names come to mind that have made an enormous contribution to the EAPC, and thus to palliative care in general. This history is documented on our website. One name should stand here pars pro toto, Vittorio Ventafridda, the unforgotten Founding President and spiritus rector. He envisaged the role of the EAPC:

“ (a) to spread knowledge and awareness about palliative care throughout Europe; (b) to bring together already existing groups and thereby promote an exchange of experience on this matter between the most- and the least-advanced countries or regions, as the realities are very different between them; and (c) to encourage initiatives for the official recognition of palliative care”.

Thirty-one years later this vision remains unchanged.

EAPC going forward 

Even if much has been accomplished, we still have a long way to go in order to sustain the work of the EAPC and ensure that the EAPC remains a major voice globally for all palliative care professionals. Under the tenure of the last board (2015 to 2019), a major change was the move to the heart of Europe: to Brussels! In addition, the EAPC focussed on some structural changes including the new website, new working groups, the development of policies and procedures and some new ways of working within the EAPC. In an ever- changing world more challenges are ahead of us. In the coming years we plan to focus on membership and on how we can best meet the needs of our current and future individual and national association members. We also value the opportunity to foster and further develop our working relationship with our global/international hospice and palliative care partners.

EAPC Board of Directors, Berlin 2019. Left to right: Natasha Pedersen, Gert Huysmans, Josep Porta Sales, Danila Valenti, Daniela Mosoiu, Catherine Walshe, Christoph Ostgathe (President), Sébastien Moine, Sandra Martins Pereira, Sonja McIlfatrick, Karl Bitschnau, Jeroen Hasselaar and Martin Loučka.

Our common goal is to further integrate palliative care into all healthcare systems; in order to achieve this goal there is a need to provide evidence through high-quality research.

Ultimately, we have to accept that Palliative Care is not a ‘one size fits all’. A good example of this is the heterogeneous discussion last year on the proposed new definition of palliative care proposed by the International Association for Hospice & Palliative Care (IAHPC). We have to work on common goals and, at the same time, ensure that we foster diversity within the EAPC.

Diversity is a resource; but we also need to be cognisant of any inequalities that exist. We are just at the beginning of a learning curve around the issues that need to be addressed in palliative care such as gender, sexuality, age etc. The new EAPC Board will endeavour to identify, address, foster diversity and tackle inequalities over the next four years. Regarding diversity and gender balance, the board in itself is good start! Diverse, for example in regions, professions, age, competencies and balanced (six women, seven men) in gender. Let’s roll up our sleeves and get started.


Posted in EAPC ACTIVITIES, EAPC Board Members | Tagged | Leave a comment

Welcome to the 11th World Research Congress of the European Association for Palliative Care – online abstract submission now open!

With increasing global interest in research in palliative care, Palermo is set to be centre stage in 2020 when it hosts the next EAPC World Research Congress on 14 to 16 May. Professor Augusto Caraceni (EAPC Research Network Chair) and Professor Sebastiano Mercadante (Local Organising Committee Chair) extend a warm welcome and explain why it’s important to start planning your abstracts now.

Left to right: Professor Augusto Caraceni (EAPC Research Network Chair) and Professor Sebastiano Mercadante (Local Organising Committee Chair).

It is a pleasure to welcome you to the 11th World Research Congress of the EAPC. The congress, which will take place in the beautiful city of Palermo, will offer excellent opportunities to meet experts in palliative care, to present and discuss research, provide new ideas and new knowledge on how to improve the treatment and care of patients and their families. The Scientific Committee has been planning the scientific programme and we’d like to thank the members of the multidisciplinary committee for their hard work and efforts: Mary Fallon (President), Lieve Van den Block, Phil Larkin (EAPC past-President), Christoph Ostgathe (EAPC President), Steffen Eychmüller, Per Sjøgren, Roeline Pasman, Marianne Jensen Hjermstad and EAPC CEO, Julie Ling.

More than ever, there is a need for the palliative care community to produce high-quality evidence. Global interest in research in palliative care is increasing. This was evident in the number of high-quality contributions received for the last EAPC World Research Congress where a total of 897 abstracts were submitted from 55 countries globally. The increase in the number of international collaborative research initiatives has provided opportunities for cooperation and the results of this type of research are adding to the body of knowledge within palliative care.

Fiera del Mediterraneo – venue for 11th EAPC World Research Congress.

The EAPC World Research Congress not only offers the opportunity to showcase world experts in palliative care, but significantly the main part of the scientific programme is based on submitted abstracts. Each abstract is reviewed by at least two independent reviewers from our Advisory Board comprising many experts from a range of professions and countries. We are grateful to all our colleagues who undertake this important work. According to the abstract score, all abstracts are then prioritised as 1) plenary talks, 2) oral communication sessions, 3) poster discussion sessions, and, 4) the poster presentations.

Start planning your abstract now…

We look forward to receiving your abstracts – the closing date is 15 October so start planning now – and to welcoming you to Palermo, Sicily, in May 2020. Please check the congress website, EAPC social media channels and the blog for regular updates on #EAPC2020

Welcome to Palermo #EAPC2020

  • Find out more about the 11th EAPC World Research Congress here.
  • Submit your abstract here.
  • Register before 16th February 2020 to get a discounted registration fee.
  • Follow us on Twitter @EAPCvzw – our official congress hashtag is #EAPC2020


Following the success in Berlin of our first-ever children’s palliative care seminar, a ‘Children’s Palliative Care Research Seminar’ will be part of the programme in Palermo. Follow the EAPC blog for more information.



Posted in EAPC World Research Congresses | Tagged | Leave a comment

Leadership in Palliative and End-of-Life Care Workshop – outcomes from Berlin

The first open session on leadership in palliative care was held recently in Berlin at the 16th European Association for Palliative Care (EAPC) World Congress. Organised by the European Palliative Care Academy (EUPCA), it presented excellent speakers and welcomed 120 participants. EUPCA Coordinator, Dr Gerrit Frerich (Germany), explains. 

Dr Gerrit Ferich.

We were greatly honoured that this session was introduced by Professor Phil Larkin (Switzerland) and chaired by Professor Sheila Payne (UK), both former presidents of the EAPC. Keynote speaker and leadership expert, Dr Sally Watson (UK), started with new leadership approaches in palliative care and assumptions about leadership. The second keynote speaker, Professor Frank Ferris (USA), spoke about the ‘Global Reach of the Five Practices of Exemplary Leaders’ and his experience with the global Leadership Development Initiative (LDI).

Impact of EUPCA Leadership courses in six countries

Six EUPCA alumni of the three previous EUPCA leadership courses gave insight into their personal leadership development and the practical impact of their projects in different parts of Europe. Coming from six different countries in Eastern and Western Europe, the alumni’s presentations covered Spain, Iceland, Estonia, Slovenia, Poland and Ireland.

EUPCA Alumni network.

Dr Juan Pablo Leiva presented his island-wide training for fire fighters and for clinicians of the Balearic Islandsin Spain to be better prepared in dealing with death and dying.

Asdis Ingvarsdottir, talked about palliative home care in Reykjavik and described future plans and challenges for palliative care in Iceland.

Dr Mari Lõhmus (Estonia) spoke about her ‘Highway to Leadership’. She faced the challenges of leadership much faster than expected, but the broader view the EUPCA course and participants shared on palliative care and leadership helped her to build the essential confidence.

Dr Maja Ebert Moltara explained her ‘Project Butterfly’ that tries to improve palliative care in Slovenia especially by dissemination activities. She pointed out that her collaboration in EUPCA resulted in major impact on national palliative care development.

Alumni and steering committee member, Dr Anna Janowicz, stated that “family carers are no longer left alone”. She shared her experience with successful campaigns for family caregivers as the manager of the Hospice Foundation Gdansk in Poland.

Prof. Michael Connolly (Ireland) outlined his leadership journey. He had learnt that leading aims to transform, challenge, support, advocate, agitate and, above all, support those he works with and for.

The presentations were followed by a lively discussion on what leadership means, especially in palliative care. Alumnus, Emily Dobson (UK), presented the third part of the open workshop, the EUPCA Alumni Platform. The platform is intended to connect EUPCA alumni and to continue supportive communication according to joint funding opportunities, events and work on leadership capacities.

EUPCA director, Professor Raymond Voltz (Germany), concluded with the key messages of this session and unveiled plans for the EAPC Leadership Task Force that will be launched soon.

Professor Sheila Payne with Professor Phil Larkin.

And the last word from Professor Sheila Payne:

“We are highly motivated to bring leadership experience together and foster palliative care pioneering in Europe. The next global networking event should be held at the next EAPC Congress in Palermo!”





Links and resources



Posted in 16th EAPC World Congress Berlin, EDUCATION & TRAINING, European Palliative Care Academy, Uncategorized | 1 Comment

Abstract Watch: Current thinking in paediatric palliative care and transition to adult care

Barry Ashpole

Barry Ashpole

The palliative care (PC) needs of children living with a terminal or life-limiting illness are unique. Barry R. Ashpole is a Communications Consultant, Educator and Media Specialist from Ontario, Canada, who contributes a bi-annual post for the blog. Here, he presents a selection of articles that focus on ‘current thinking’ in paediatric PC. There is also a selection of articles specific to end-of-life care for adolescents and their transition to adult care.

Paediatric Palliative Care

Development of a pediatric palliative care curriculum and dissemination model: Education in Palliative & End-of-Life Care (EPEC) pediatrics

JOURNAL OF PAIN & SYMPTOM MANAGEMENT| Online – 17 June 2019 – The 24-module curriculum is designed to teach primary palliative care and is delivered in a combination of online learning and in-person, face-to-face sessions. A one-day workshop was developed to teach EPEC-Pediatrics graduates to teach future “trainers,” thus becoming “master facilitators.” Between 2012-2019 a total of 867 EPEC-pediatric trainers and 75 master facilitators from 58 countries participated in 17 become an EPEC-pediatrics-trainer conferences and three professional development workshops. Abstract (with link to references)

Of related interest:

  • ‘Pediatric palliative care in the multi-cultural context: Findings from a workshop conference,’ Journal of Pain & Symptom Management, 2019;57(4):846-855. Full text

When a child dies in the pediatric intensive care unit: Practice recommendations from a qualitative study of bereaved parents

PEDIATRIC CRITICAL CARE MEDICINE| Online – 14 June 2019 – During the dying phase, parents suggested private, demedicalized rooms, familiar staff members, and support to leave the hospital. Recommendations for care after death focused on the provision of ongoing support from the hospital or local bereavement services, as well as improved information delivery. Recommendations range from simple practice changes to larger organizational modifications, offering avenues for change and improvement on an individual healthcare provider level and within individual pediatric intensive care units. Abstract

Of related interest:

  • ‘Impact of specialized pediatric palliative care programs on communication and decision-making,’ Patient Education & Counseling, 2019;102(8):1404-1412. Abstract
  • ‘Parental experiences of end-of-life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: A qualitative interview study,’BMJ Open, published online 9 May 2019. Full text
  • ‘Stopping the momentum of clinical cascades in the pediatric intensive care unit: Intentional responses to the limits of medicine,’ Journal of Palliative Care, published online 29 May 2019. First page view
  • ‘Parental perspectives on roles in end-of-life decision making in the pediatric intensive care unit: An integrative review,’ Journal of Pediatric Nursing, 2019;46 (3):18-25. Abstract

Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: A qualitative study

EUROPEAN JOURNAL OF PEDIATRICS, 2019;178(7):1075-1085. This study reports in detail about the most prominent parental experiences when caring for a child with a life-limiting or life-threatening diseases (LLD/LTD), both malignant and non-malignant, at home. It also investigates parents coping strategies in adjusting to the situation. Parenting and caring for a child with a LLD/LTD require continuous management of anxiety and loss. At the same time, parents work towards a new normality and gradually take control to arrange the best care for their child and family. Full text

Of related interest:

  • ‘Achieving consensus: Advice for paediatricians and other health professionals on prevention, recognition and management of conflict in paediatric practice,’ Archives of Disease in Children, 2019;104(5): 413-416. Full text
  • ‘Pediatric palliative care in the medical neighborhood for children with medical complexity,’ Families, Systems & Health, 2019;37(2):107-119. Abstract.
  • ‘Finding hope and healing when cure is not possible’ Mayo Clinic Proceedings, 2019;94(4):677-685. Full text
  • ‘“What if?”: Addressing uncertainty with families,’ Pediatric Blood & Cancer, 2019;66(6):e27699. Abstract

The arc of generational care: A case series considering grandparent roles and care needs in pediatric palliative care

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE| Online – 22 June 2019 – Children receiving palliative care (PC) services are held within the context of a family and often within multiple-generational arms. The purpose of this case series paper is to recognize grandparents’ roles in their family system from a personal, cultural, and anthropological perspective; to explore emotions and experiences as applies to grandparents of children receiving PC; and to provide tangible insight into caring well for families across the generational arc. Abstract

Let’s talk with children about life-threatening diseases

THE LANCET, 2019;393(10176):1072. There is little evidence-based practical guidance grounded in an understanding of the developmental stage of a child and the need for, and effect of, information about life-threatening conditions. Even less evidence is available on how best to communicate with children when their parents have a life-threatening disease. Two articles in this week’s issue of The Lancet review the literature and provide communication principles and examples based on an integration of the available research and the authors’ own clinical and academic perspective.1,2 Full text.

  1. ‘Communication with children and adolescents about the diagnosis of their own life-threatening condition.’ Summary (with list of references).
  1. ‘Communication with children and adolescents about the diagnosis of a life-threatening condition in their parent.’ Summary (with list of references).

Of related interest:

  • ‘Parallel planning and the paediatric critical care patient,’ Archives of Disease in Childhood, published online 31 January 2019. Abstract
  • ‘Who decides what is in the child’s “best interest”?’ Journal of Hospice & Palliative Nursing, 2019;21(1): 8-13. Abstract‘Gaps in the implementation of shared decision-making: Illustrative cases,’ Pediatrics, 2019;143(3): e20183055. Abstract

Virtual reality: Endless potential in pediatric palliative care

JOURNAL OF PALLIATIVE MEDICINE| Online – 6 June 2019 – Clinicians must use all the tools at their disposal. Virtual reality is quickly becoming a useful tool in many areas of medicine, including surgical planning, simulation training, rehabilitation, and pain prevention and treatment. Recently it has been used in the adult palliative care (PC) population for symptom management, and memory and legacy creation. The authors present a case report for, what they believe to be, the first time in the pediatric PC population. Abstract

Estimating neurologic prognosis in children: High stakes, poor data

JAMA NEUROLOGY| Online – 13 May 2019 – Parents of critically ill children often ask their physicians to predict their child’s future so that they can make medical decisions and plan for his or her life. The stakes can be high: some parents must decide whether to resuscitate a child if he or she deteriorates, whether to remove the ventilator in the face of brain injury, or how to balance the possibilities of death and life with future disability. Other families face less acute decisions, such as whether to relocate to a home with disability access or transition to a different type of school. Abstract.

Oncology nurse managers’ perceptions of palliative care and end-of-life communication

JOURNAL OF PEDIATRIC ONCOLOGY NURSING, 2019;36(3):178-190. Findings of this study include participants’ experience of “fostering a caring climate,” which includes: 1) Imprint of initial grief experiences and emotions; 2) Constant vigilance (assessing and optimizing family-centered care); and, 3) Promoting a competent, thoughtful, and caring workforce. Findings indicate nurse managers draw on their own experiences and their management knowledge to address the palliative care/end-of-life care learning needs of nursing staff and patient/family needs. Abstract

Of related interest:

  • ‘The experiences of physicians, nurses, and social workers providing end-of-life care in a pediatric acute-care hospital,’ Death Studies, published online 4 March 2019. Abstract

The benefits and burdens of pediatric palliative care and end-of-life research: A systematic review

JOURNAL OF PALLIATIVE MEDICINE| Online – 5 March 2019 – A tension exists between the desire to enhance palliative and end-of-life (EoL) care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. The lack of published exploration into the benefits and burdens of those asked to take part in research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and EoL research design and reporting. Abstract.

Of related interest:

  • ‘Palliative care and paediatric cardiology: Current evidence and future directions,’ The Lancet: Child & Adolescent Health, 2019;3(7):502-510. Abstract (with list of references)

Bereavement counselling for healthcare workers in the aftermath of child death

IRISH MEDICAL JOURNAL, 2019;112(5). This study highlights the need to improve staff awareness of the counselling services that are available and the need to proactively approach staff to offer these supports after paediatric patient deaths and other serious adverse events. Ideally the scope of bereavement counselling could be extended to allowing time for self-healing activities for individuals while at work. The literature shows that meditation, journaling, prayer, and quiet time may be therapeutic for healthcare workers. Full text

End-of-life Care in Adolescents

When adolescents may die

JOURNAL OF CLINICAL ETHICS, 2019;30(2):77-88. The author discusses how clinicians might best treat adolescents who may die. He discusses: 1) These patients’ cognition, emotional tendencies, and sensitivity to interpersonal cues; 2) Their parents’ feelings of loss and guilt and their clinicians’ risk of imposing their own moral views without knowing this; 3) The practical concerns of helping these patients gain or regain resilience and to identify strengths they have had in the past; and, 4) Who, among staff, might be best able to do this. Abstract

Healthcare stakeholder perspectives regarding the role of a patient navigator during transition to adult care

BMC HEALTH SERVICES RESEARCH| Online – 17 June 2019 – Consistent definitions, key tasks, roles and responsibilities are lacking in guiding the scope of practice and the implementation of patient navigators (PNs). This study explores how PNs can support young people with special healthcare needs and their families to successfully transfer from pediatric to adult care. The findings will help guide development of a transition navigator role in a diverse health system and will inform future interventional trials to evaluate the effectiveness of PN programs. Full text

Supporting the healthcare transition from adolescence to adulthood in the medical home

PEDIATRICS, 2018;142(5):e20182587. This report provides practice-based quality improvement guidance on key elements of transition planning, transfer and integration into adult care for all youth and young adults. It includes sections on definition and guiding principles, the status of healthcare transition preparation among youth, barriers, outcome evidence, recommended healthcare transition processes and implementation strategies using quality improvement methods, special populations, education and training in pediatric onset conditions, and payment options. Full text.

Of related interest:

  • ‘Evaluation of a pilot service to help young people with life-limiting conditions transition from children’s palliative care services,’ International Journal of Palliative Nursing, 2018;24(7):322-332. Abstract
  • ‘Conflicting realities experienced by children with life‐limiting and life‐threatening conditions when transitioning to adult health services,’ Journal of Advance Nursing, 2018;74(12):2871-2881. Abstract
  • ‘Shared decision making’s adolescence and transition into adulthood,’ Patient Education & Counseling, 2018;101(10):1723-1724. Abstract (with link to references)

Additional Resources

The Children & Youth Grief Network of Peel Region (Ontario, Canada) recently published a review of the literature focused on the many different aspects of grief and bereavement among children and young people. See ‘End-of-life care in children and adolescents’ (pp.9-10.) The main focus is on evidence-based studies published in peer-reviewed journals, reflecting current thinking on the many issues identified. Download/view here

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

Posted in ABSTRACT WATCH, Children and young people, CHILDREN'S PALLIATIVE CARE | Leave a comment

 ‘European Journal of Palliative Care’ – FREE access to the complete archive for all!

The publishers of our former official journal, the ‘European Journal of Palliative Care’, are enabling free access to around 2,000 journal articles. Julie Ling, Chief Executive Officer, and Avril Jackson, Social Media Editor, European Association for Palliative Care (EAPC), explain.

Julie Ling (left) and Avril Jackson.

A year ago we shared with our members and followers the sad news of the closure of the European Journal of Palliative Care, a journal much loved by its readers and one of the official journals of the EAPC since 1994. In the 24 years of its existence, the journal had built up an impeccable reputation for diverse and high-quality articles on palliative and end-of-life care. Equally, it was the source of several seminal EAPC white papers as well as being the official ‘book of abstracts’ for many EAPC congresses.

Now, one year on, we’re delighted to tell you that thanks to the publishers,PMGroup and Hayward Medical Publishing, everyone can now enjoy free access to the entire archive of the EJPC from 1994 to 2018. This opens up a fantastic repository of thought-provoking and well-evidenced articles from across Europe and beyond. So take the opportunity to browse the archive and read and download your favourite articles. To access the archive, click here and register free of charge (you may need to choose the year, issue and article and then register). There are 24 years of global palliative care history in that archive – please take advantage of this and register now!

Some of the vibrant and imaginative journal covers.

In a recent discussion with Karl Equi, Executive Director of Hayward Medical Publishing, he said:

“PMGroup and Hayward Medical Publishing recognise the high quality content within the EJPC – and the benefits this has to patients and healthcare professionals alike, we are pleased to keep this archive free to access while we look at ways of rejuvenating this much respected and valued journal.”

When the journal closed in June 2018 we were devastated, not only for the loss of top-quality articles to the journal’s readers and our members, our colleagues who worked on the journal, but also it was the end of a strong and effective bond between the EJPC and the EAPC. We had always welcomed the journal’s presence at our congresses and had appreciated their generous donation of prizes for our award winners over many years. But in opening up the archive we feel that some of fruits of our past relationship have not been entirely lost and we are therefore most grateful to the journal’s publishers.

So, as thoughts turn to holidays and summer reading, forget the blockbuster and dip into the EJPC archive  – we promise you won’t be disappointed!


  • European Journal of Palliative Care. Choose the year, issue and article then register free of charge to access the archive.
  • You can also view more than 120 posts on the EAPC blog that relate to longer EJPC articles – click here to read the posts. (To access the full journal article in the archive, you will need to register as instructed above).
Posted in EAPC-LINKED JOURNALS, European Journal of Palliative Care | 2 Comments