What it means to be a parent of a dying child

Kristina Thomas, Senior Research Fellow and Anna Collins, Research Fellow, Centre for Palliative Care, St Vincent’s Hospital Melbourne, Australia, explain the background to their longer article selected as ‘Editor’s choice’ in the December issue of Palliative Medicine. 

Kristina Thomas

Kristina Thomas

Anna Collins

Anna Collins

We have been researching the psychological and social impacts of being a carer of a person receiving palliative care for many years, but our focus has previously been on adults. So what are the impacts when the person receiving care is a child with life-limiting illness?

When the opportunity arose to do a study with one of the local children’s hospices, we were both very interested and jumped on board. Every year, this statewide service provides support to more than 800 families who have a child living with a disability or illness that will shorten their life. This is devastating for parents and brings a whole range of new issues and challenges. But very little has been published in Australia and internationally on what it is like to be a parent whose child has a life-limiting condition and how it impacts on one’s life.

We started by sending out a questionnaire to parents who were registered at the hospice. Despite the already high demands on their time, it was telling that many were very happy to be involved. It was, after all, a topic they were passionate about and living with every day. We also followed up with interviews with some interested parents to elicit further information about their physical, social and psychological lives.

There were so many insightful comments and harrowing stories, but also examples of strength and resilience. One theme to emerge was the extreme physical and social isolation from their community, as one parent said, I often feel like I am trapped inside the house”. Parents commonly had to give up work or reduce the hours they worked so they could care for their child. They needed to be able to drop everything if their child had a health emergency.

Probably the most significant finding from the study was the impact of caring on the parent’s health. Caring for a child 24/7 led to significant fatigue and stress and impacted on both physical and mental health. Parents prioritised the child’s health to the detriment of their own. Even with the support of palliative care services, more help was needed by parents to ensure their own wellbeing.

But what is it like to live with the knowledge that your child will die? We were struck by the range of emotions that parents expressed including grief, helplessness, uncertainty about when and how their child would die, to relief that the suffering of their child would end. Many parents chose to focus on the present, given an unknown or daunting future. One parent said, I don’t like to think about [the future] because it’s not going to be good. I think it’s just going to get harder.”

Despite the immense difficulties, we also identified that parents acquired great meaning and purpose from caring for their child, including a new capacity to see what’s important. They described an inner resiliency and a changed perspective about what is meaningful in life. Undoubtedly this aspect of carers’ lived experiences is something we want to share, to recognise the transformative potential and immense personal satisfaction that can come from embracing a caregiving role.

We hope that this research may help to ensure the carer voice is well heard by all paediatric palliative care service providers, but perhaps especially by our governments and funders. Greater attention to caregivers’ health and wellbeing must be a continued priority and more tailored supports are required to assist parents to cope with the physical and emotional demands of caring for child with a life-limiting illness.


pm-mediumRead the full article in Palliative Medicine

This blog post relates to the longer article, ‘Lived experiences of parents caring for a child with a life-limiting condition in Australia: A Qualitative Study’ by Anna Collins, Nicole Hennessy-Anderson, Sarah Hosking, Jenny Hynson, Cheryl Remedios, and Kristina Thomas, published in Palliative Medicine 2016, Vol. 30(10) 30: 950-959, first published on March 7, 2016 doi: 10.1177/0269216316634245.

Download your free copy of this month’s Editor’s Choice article here.  palliativemedicine_2016_30_10

How to download previously published ‘Editor’s choice’ articles
EAPC members and registered users of the EAPC website can download all ‘Editor’s choice’ papers free of charge from the EAPC website but you will need to register or login first. Please follow the instructions in the top right-hand corner of the EAPC home page and scroll down to the article. Click here to view other EAPC-originated papers.

Read earlier Editor’s Choice posts on the EAPC Blog

Posted in CHILDREN'S PALLIATIVE CARE, EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice | Tagged , | Leave a comment

InSup-C launches new book on integrated palliative care – InSup-C publica un nuevo libro sobre cuidados paliativos integrados  

Haga clic aquí para obtener la versión en español 

The InSup-C project has been investigating the best way to deliver integrated palliative care to people who have advanced cancer, heart failure or lung disease as they come towards the end of their lives. Research concludes with the publication of a comprehensive new book in English and Spanish. Eduardo Garralda, a member of the Integrated Palliative Care InSup-C Consortium Project, explains.

Eduardo Garralda

Eduardo Garralda

A new book entitled ‘Integrated Palliative Care’, presents examples of integrated palliative care identified by researchers from seven different countries of the European Union who were part of the InSup-C research consortium. Published on 30 September 2016 by Radboud University, Nijmegen, The Netherlands, the book was launched in Brussels at the InSup-C Symposium on integrated care. As authors and contributors to the project, we are pleased to announce the availability of a free-to-download e-book, both in English and Spanish.

The English version of the book was edited by InSup-C project members, Jeroen Hasselaar and Sheila Payne. The supervision of the translation from English to Spanish was undertaken by Carlos Centeno and Eduardo Garralda from the Atlantes Research Programme (University of Navarra). This book provides a European context of palliative care development, which includes stories from patients and family caregivers about their own experiences of integrated palliative care within five EU countries (Netherlands, United Kingdom, Germany, Hungary and Belgium).

These examples, models and examples of integrated palliative care are the consequence of an attempt to study best practices of delivering care to people suffering from advanced cancer, heart failure or chronic obstructive pulmonary disease as they face the end of their lives. The definition agreed and used by the team members is the following:

“Integrated palliative care (IPC) involves bringing together administrative, organisational, clinical and service aspects in order to achieve continuity of care between all actors involved in the care network of patients receiving palliative care (PC) services .” 1

Chapter seven includes discussion of ‘Specialist palliative care in a rural area’ with an example from the UK. Photograph by Anthony Greenwood.

Chapter seven includes discussion of ‘Specialist palliative care in a rural area’ with an example from the UK. 

The book also provides highlights of the factors that facilitate and are barriers to integrated palliative care, with recommendations for policy and practice.

In his foreword to the book, Professor Phillip Larkin, President of the European Association for Palliative Care, wrote:

“This book provides the impetus for what can be done and what can be changed. The next 20 years for palliative and end-of-life care will be very different to what has gone before. Understanding the value of what integration of care can bring to patients and families is the new horizon for our discipline.”

We consider this book to be essential reading for all those undertaking studies in palliative care. And with the 15th EAPC World Congress taking place in Madrid next year, what better place to promote the Spanish translation of our book – a book that we hope will be a source of inspiration for integrated palliative care in the Spanish-speaking world.


  1. Ewert B, Hodiamont F, van Wijngaarden J, Payne S, Groot M, Hasselaar J, Menten J and Radbruch L. Building a taxonomy of integrated palliative care initiatives: results from a focus group. BMJ Support Palliat Care 2016;6:1 14-20 Published Online First: 8 December 2015 doi:10.1136/bmjspcare-2014-000841. Download a copy here.

integrated-palliative-care-2016Download your free copy of Integrated Palliative Care

Find out more . . .



InSup-C publica un nuevo libro sobre cuidados paliativos integrados

El proyecto InSup-C ha estado investigando el mejor modo de proveer cuidados paliativos integrados a pacientes con cáncer avanzado, insuficiencia cardíaca o enfermedad pulmonar, cuando éstos se acercan al final de sus vidas. La investigación ha concluido con la publicación de un libro en inglés y español. Eduardo Garralda, miembro del proyecto del Consorcio InSup-C sobre cuidados paliativos integrados nos lo explica.

Eduardo Garralda

Eduardo Garralda

El nuevo libro titulado “Cuidados paliativos integrados” presenta ejemplos de cuidados paliativos integrados identificados por investigadores de siete países de la Unión Europea, miembros del Consorcio de Investigación InSup-C. El libro fue publicado el pasado 30 de septiembre de 2016 por la Universidad Radboud de Nimega, Holanda, y presentado en el Simposio sobre cuidados paliativos integrados que tuvo lugar en Bruselas. Como autores y participantes del proyecto, nos alegra anunciar la disponibilidad gratuita del libro on-line, tanto en inglés como en español.

La versión inglesa del libro fue editada por los miembros del proyecto InSup-C, Jeroen Hasselaar y Sheila Payne; y la supervisión de la traducción al español la realizaron Carlos Centeno y Eduardo Garralda, del equipo de investigación Atlantes (Universidad de Navarra). Este libro proporciona una base para el desarrollo de los cuidados paliativos en un contexto europeo, incluyendo historias de pacientes y familiares que recogen sus experiencias respecto a los cuidados paliativos integrados en cinco países europeos (Holanda, Reino Unido, Alemania, Hungría y Bélgica).

Estos ejemplos y modelos de cuidados paliativos integrados, son el resultado del estudio sobre las mejores prácticas ien la atención de pacientes con cáncer avanzado, insuficiencia cardíaca y enfermedad crónica pulmonar, cuando éstos afrontan el final de sus vidas. La definición consensuada y utilizada por lo miembros del equipo es la siguiente:

“Los cuidados paliativos integrados consisten en la coordinación de los aspectos administrativos, organizativos, clínicos y de servicios, con el objeto de garantizar la continuidad del cuidado entre todos los agentes implicados en la red de cuidados de pacientes que reciben cuidados paliativos.1

Chapter seven includes discussion of ‘Specialist palliative care in a rural area’ with an example from the UK. Photograph by Anthony Greenwood.

Chapter seven includes discussion of ‘Specialist palliative care in a rural area’ with an example from the UK. 

Este libro explica también algunos de los aspectos que facilitan y obstaculizan la integración de los cuidados paliativos, con recomendaciones para el desarrollo de políticas y prácticas adecuadas.

En el prólogo del libro, el Profesor Phillip Larkin, Presidente de la Asociación Europea de Cuidados Paliativos, escribió:

“Este libro presenta el ímpetu de lo que se puede hacer y lo que puede ser cambiado. En los próximos 20 años los cuidados paliativos y la atención al final de vida serán muy distintos de lo que hemos conocido hasta ahora. Comprender el valor de lo que la integración de la atención puede proporcionar a los pacientes y sus familias es el nuevo horizonte de nuestra disciplina.”

Consideramos que este libro es de lectura recomendada para todos aquellos interesados en los cuidados paliativos. Con el XV Congreso Mundial de la EAPC celebrándose en Madrid este año, qué mejor lugar para promocionar la traducción al español de nuestro libro – un libro que esperemos sea fuente de inspiración para la integración de los cuidados paliativos en el mundo hispanoparlante.


  1. Ewert B, Hodiamont F, van Wijngaarden J, Payne S, Groot M, Hasselaar J, Menten J and Radbruch L. Building a taxonomy of integrated palliative care initiatives: results from a focus group. BMJ Support Palliat Care 2016;6:1 14-20 Published Online First: 8 December 2015 doi:10.1136/bmjspcare-2014-000841. Descarga un ejemplar aquí.

integrated-palliative-care-2016Descarga tu copia gratuita de Cuidados Paliativos Integrados

Encuentra más . . .

Posted in EAPC COLLABORATIVE PROJECTS, InSup-C (integrated palliative care), PATIENT & FAMILY CARE | Tagged , | Leave a comment

EAPC gets more involved in European Union . . .

Professor David Oliver, University of Kent, UK, is a member of the board of the European Association for Palliative Care (EAPC) and represents the EAPC on the Civil Society Forum on Drugs.

Prof. David Oliver

Prof. David Oliver

The EAPC has recently become more involved in the activities of the European Union (EU). In 2015, we were invited to join the Civil Society Forum on Drugs (CSF) within the EU. This group was formed many years ago to provide expert advice to the European Commission (EC) on drug control and management – see an earlier post on the EAPC Blog.

Over the past year, the CSF has been helping the EU prepare for the United Nations General Assembly Special Session on Drug Control (UNGASS). This took place in New York in April 2016 and an outcome document was negotiated and then adopted by the UN General Assembly. The EU had provided significant input on how to incorporate a health and human rights approach towards drugs for this UNGASS and, as part of the CSF, the EAPC was able to push for a section on the availability of medication for pain control within the EU statements. This was included in the final UNGASS outcome document, and had been supported by various non-governmental organisations and UN agencies, including the International Association for Hospice and Palliative Care, the Worldwide Hospice Palliative Care Alliance, Human Rights Watch and the World Health Organization. This was the first time, in the history of modern global drug control, that access to controlled substances for medical purposes was given such prominence in the debates and final declaration.


European Commission building, Brussels

The EAPC’s involvement has continued over the past few months since UNGASS. The CSF on Drugs has given increasing input in the EU positions at the Commission on Narcotics Drugs (CND) in Vienna. The EC had asked for examples of good practice to put forward to the latest CND sessions that focused on how governments were implementing the recommendations included in the UNGASS outcome document at national level. We were able to suggest the need for the availability of medication for pain control, and provided as an example of good practice in Europe the ATOME (Access to Opioid Medication in Europe) project. The EU took this forward and a statement was sent to the CND Intersessional Meeting held on 10 October. (Read more on the CND blog).

The involvement of the EAPC within the European Civil Society Forum on Drugs shows the importance of greater involvement with the EU and the need to continue pushing for better access to essential medicines across Europe. The CSF has been very welcoming of the EAPC and our role in emphasising the medical and scientific use of opioids, and the importance of ensuring that medical use is not compromised by the controls on drug misuse. This has allowed us to be more involved at a European level and we hope to develop other links over the coming years. Engagement in the CSF may also enable us to influence care and developments across Europe. Now that the EAPC has an office in Brussels this will help to ensure that we are more visible within the European Union and Commission.

Links and resources


EAPC17_Header_254x71-2Are you joining us in Madrid for the 15th World Congress of the European Association for Palliative Care?

Please visit the congress website here. Early Bird registration closes on 15 February 2017!



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

The Convenient Death of King George V

Associate Professor A D (Sandy) Macleod is a psychiatrist and palliative medicine physician. Jane Vella-Brincat is a clinical pharmacist. They have been working in the palliative care services in Christchurch, New Zealand, for many years. Here, they explain the background to their longer article published in the November/December edition of the European Journal of Palliative Care. 

There are many intriguing and as yet unanswered issues surrounding physician-assisted euthanasia. One of our lasting impressions of several decades of attending to the dying is that for most nature is kind. Occasionally, uncontrollable neuropathic pain, nasty delirium or desperate dyspnoea complicate this final passage and challenge our caring. But equally disturbing is the occasional anxious determination of the patient, the relatives or the attending doctor to pre-empt nature. This may be understandable in terms of the medical plight of the patient, and in these cases expert palliative care is indicated and necessary. However, sometimes this appears driven by timing – it may be convenient for those watching and waiting to hasten the patient’s dying.

Portrait of King George V, ca. 1911, © Victoria and Albert Museum, London

Portrait of King George V, c. 1911, © Victoria and Albert Museum, London

Quite by chance we came across reports of the death of King George V of Great Britain and Ireland, Emperor of India, whose dying was hastened by the then Royal Physician, Lord Dawson, in 1936.

The king was profoundly ill, manifestly delirious and imminently dying. There were several conveniences that influenced the administration of a fatal cocktail of medicines. There were constitutional aspects (for a king surely needs to be competent to rule). For example, his doctor had pressing professional commitments to attend to the following day, the reporting of his death was preferred in the morning rather than the less prestigious evening papers, and the king’s health struggles had been long and distressing. The details of the king’s final hours were not publicised at the time. Indeed, it was 50 years before the truth emerged.

As unique as this case history undoubtedly is, it illustrates what is possibly an increasing desire in the modern world to artificially intervene and orchestrate the timing of, and perhaps sanitise, the dying process. Yet palliative care has the knowledge, the skill and, in many locations, the resources to comfortably support nature. Dying is manageable, though death is inevitable.

4_cover_2-jpgRead the full article in the European Journal of Palliative Care
This post relates to a longer article, The Convenient Death of King George V, by A D (Sandy) Macleod and Jane Vella-Brincat, published in the November/December 2016 edition of the European Journal of Palliative Care (vol. 23.6).  If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive.

You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.


ejpclinkedinEJPC Palliative Care Development Award 2017 – nominations form now online.

Do you know someone who has made a major contribution to palliative care policy development? Why not nominate them for the EJPC Palliative Care Policy Development Award? Click here to nominate. Launched by the European Journal of Palliative Care in collaboration with the European Association for Palliative Care, the award is aimed at professionals working in palliative care worldwide who have made a substantial contribution to policy development through research, clinical practice or as policy activists.

The 2017 Award will be presented at the 15th World Congress of the EAPC  in Madrid, Spain (18–20 May 2017). Deadline for applications: 31 March 2017.

Posted in EAPC-LINKED JOURNALS, European Journal of Palliative Care | Tagged | Leave a comment

Greater than the sum of its parts – Asia Pacific Hospice Conference 2017 brings back fond memories of 1996

Professor Cynthia Goh, Co-Chair of the 12th Asia Pacific Hospice Conference 2017 Organising Committee, and Chair of the Asia Pacific Hospice Palliative Care Network, welcomes you to Singapore and urges you to submit your abstracts now . . .


Professor Cynthia Goh

After 21 years, the Asia Pacific Hospice Conference (APHC) is back again in Singapore (26 to 29 July 2017). I must say, this conference is really bringing back many fond memories of the conference that was held in 1996: of Dame Cicely Saunders (founder of the modern hospice movement), Dr Rosalie Shaw, who became the first executive director of the Asia Pacific Hospice Palliative Care Network (APHN) and Dr Hinohara, who first had the idea of a network to link individuals and organisations working in this field.

It was very encouraging to meet other like-minded friends in the region doing pioneering work in Asia at that time. We shared about our challenges, experiences, struggles and concerns for the future. It was in Singapore where we resolved to hold regular, regional conferences.

What to expect at the conference

The theme of this conference ‘Greater than the Sum of its Parts’ reflects our aspiration to join together and, in our sharing, find that we are stronger and more greatly enriched than if we were working as individuals in isolation. I hope at this 12th APHC 2017, we shall feel once more the warmth and friendship of belonging to one hospice family.

Exciting features of the conference 

We hope that during this conference, there will be much sharing of ideas of different ways of doing things, learning about what is unique in each of our countries, and what we have in common. The conference will be a place to hear updates about the Asia Pacific region. The APHN is deeply involved in projects to build capacity in palliative care in the region, in education and in research. In this conference, there will be a concurrent session to talk about the Lien Collaborative for Palliative Care project on how to build palliative care services and have them integrated into the healthcare systems. A Mandarin pre-conference workshop has also been specially included in the programme on updates of palliative care in the Chinese-speaking regions such as China.

To encourage our colleagues from the developing countries to join us at the conference, APHN will be giving out the Rosalie Shaw Travel Scholarship and several APHN bursaries for which participants may apply.  Look out for more information on the scholarships and bursaries at the APHN website.

My personal wish is for participants to find not only the latest updates and knowledge at this conference, but also refreshment of body and soul as you meet with friends and like-minded people at this palliative care conference.

Find out more …



2016 – the year we raised more awareness about children’s palliative care in Norway

Continuing our series of posts, in collaboration with the European Association for Palliative Care (EAPC) Paediatric Taskforce, about children’s palliative care with examples of initiatives that aim to improve care for children, young people and their families.

Today, Natasha Pedersen, Chief Executive Officer, and Karin Kvasse, Secretary/Project Officer, Foreningen for Barnepalliasjon (Norwegian Association for Paediatric Palliative Care), share some of the key achievements of the past year to develop children’s palliative care in Norway.

Left to right: Karin Kvasse and Natasha Pedersen

Left to right: Karin Kvasse and Natasha Pedersen

When it comes to awareness and provision of children’s palliative care services, Norway is sadly far behind comparable countries in Europe. Approximately, 4,000 children in Norway would benefit from palliative care but there are currently no children’s hospices. A pilot project for palliative care education will start in January 2017 but there is currently no specialised paediatric palliative care education. More than 1,500 healthcare professionals have attended courses and conferences and several adult palliative care education programmes now include modules on paediatric palliative care.

But things are changing – and much of this is down to seven years of hard, strategic work from a small office in Kristiansand, Norway.

This spring, the association changed its name to FFB – Foreningen for barnepalliasjon (the Norwegian Association for Paediatric Palliative Care). We have developed from an enthusiastic group into a leading expert in paediatric palliative care; politicians and authorities alike listen to us and seek our advice. Proof of this came when Natasha, our CEO, was appointed by the government to represent children’s palliative care in the Norwegian Official Report (NOU) on palliative care.


Norwegian translation of the ‘Oxford Textbook of Palliative Care for Children

Education – the key to improvement

In 2016, we worked on a wide range of tasks, our most important contribution being the publication of the first comprehensive textbook on children’s palliative care in Norwegian. The translation into Norwegian of the ‘Oxford Textbook of Palliative Care for Children’ should enable dissemination of knowledge at all levels and multidisciplinary education within children’s palliative care.

We have also arranged several educational gatherings at colleges and universities to empower and educate health personnel across the country. This work will continue for some time to come.

Natasha (centre) with the chair of the The Standing Committee on Health and Care Services, Ms Kari Kjønaas Kjos (Progress Party) and Ms Tone Wilhelmsen Trøen (Conservative Party)

Natasha (centre) with the chair of the The Standing Committee on Health and Care Services, Ms Kari Kjønaas Kjos (Progress Party) and Ms Tone Wilhelmsen Trøen (Conservative Party). Copyright Foreningen for barnepalliasjon.



In August, we participated in Arendalsuka, an annual forum where national delegates in politics, society and industry meet each other and the public to debate and develop future policy. Arendalsuka is a politically independent forum that helps to strengthen our democratic powers. We had our own stand for the whole week, and almost all the leaders of the political parties dropped by for information. We also had a stand in Kristiansand to mark World Hospice and Palliative Care Day on 8 October, where we talked to people and gave away anticipatory grief ribbons, balloons and brochures.

Developing international links

We are developing a strategic plan for fundraising to support our work in building the first children’s hospice in Norway. As part of this process, we visited the wonderful children’s hospice, Regenbogenland, in Düsseldorf, Germany. They put on a great programme for us; it was an enlightening and powerful experience for those of us who had not seen a children’s hospice before and will contribute greatly as we plan our own hospice. We have also developed a link with Asociatia Lumina, an organisation that supports palliative care for children and young people in Romania. They visited us in August, and we will visit them next year.

tommy-halvorsen-img_7008Anticipatory grief – workshop and book

For the first time, we arranged an anticipatory grief workshop for parents in September that made the national news. Eleven parents from across Norway enjoyed a weekend of treats including a spa, Yoga, art therapy and Segway trips. New friendships were also created. Stories, quotes and pictures from this weekend form the basis of a new book about anticipatory grief that we hope will be published later this year.

Keep in touch

Social media is a vital part of our work in spreading knowledge of children’s palliative care and we hope that you too will want to follow us using the links below.


Visit the EAPC Blog for more posts in this series.




Posted in ADVOCACY & POLICY, Children and young people, CHILDREN'S PALLIATIVE CARE, EAPC Taskforces/special projects | Tagged | Leave a comment

Triage in palliative care: Research participants needed

Dr Beth Russell, Palliative Care Physician and Researcher, Centre for Palliative Care, Melbourne, Australia, (together with Associate Professor Jennifer Philip, Professor Peter Hudson, Associate Professor Vijaya Sundararajan, Associate Professor Brian Le, Associate Professor Caroline Brand, Ms Anna Collins and Dr Sara Vogrin).

Dr Beth Russell

Dr Beth Russell

It’s Friday afternoon and your palliative care service is almost at capacity. There is only one bed left to accept one more patient, or there is only time for one more home visit, but the phone has been running hot with new referrals …

A breathless woman deteriorating with heart failure who can no longer walk to the bathroom … An unconscious man imminently dying after a major stroke … A woman with metastatic cancer having severe pain … A man with high care needs whose spouse caregiver is not coping…

Which patient would you give your last bed or home visit to?

As demand for palliative care increases, palliative care clinicians face these difficult decisions frequently. Yet there has been very little research to develop a robust and fair system to triage palliative care needs, that is, to prioritise one person’s needs over another.

yellow-triage-signThe concept of triage was first developed during the Napoleonic wars in the early 1800s, with many refinements since. Today, there are simple, well tested tools for emergency clinicians to rate the severity of a patient’s injuries and allocate clinical resources in such a way as to help as many patients as possible. Not so in palliative care. The treatment goals may be different – focusing on quality of life and relief of suffering – but resources still need to be used in an equitable, transparent manner to achieve the greatest good.

To address this urgent need, our team has been working on developing a decision aid for palliative care triage. We have conducted a foundational study with Australian health professionals to better understand which factors clinicians use to assess the urgency of palliative care needs.1 Now we are using this as the basis for an international research project to determine how each of these factors should be weighted. We will use the research project results to create a decision aid for clinicians to use in everyday practice.

So, if you are a health professional anywhere in the world working primarily in palliative care with at least two years of experience, we want to know your views! Please take part in this world-first international online research project at www.tinyurl.com/palliativetriage. For more information email Dr Beth Russell or contact via the links below. 

Thank you in advance for your important contribution to this work, which we hope will make palliative care more accessible to those who need it most.


1. Russell B, Hennesy-Anderson N, Collins A, Burchell J, Sundararajan V, Le B, Brand C, Hudson P, Philip JResponding to urgency of need in palliative care: Initial stages in the development of a decision aid for palliative care triage. Palliative Medicine.2016; 30(6): NP42.

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