Lessons to be learned from children and adolescents approaching end of life – An interview with Dr Lorna Fraser, winner of the 2018 EAPC Post-Doctoral Award

Highlights of every EAPC Congress are the EAPC Researcher Awards, which recognise and support the work of scientists and clinicians who make an outstanding contribution to palliative care research. 

We talk to Dr Lorna Fraser, winner of the 2018 EAPC Post-Doctoral Award, about her work as a Senior Lecturer and Director of the Martin House Research Centre in the Department of Health Sciences at the University of York, UK. Lorna received the 2018 EAPC Post-Doctoral Award yesterday in Bern.

We believe you started out in clinical paediatrics. What motivated you to move on from clinical work to your current academic role?

Dr Lorna Fraser

Dr Lorna Fraser: It was all a bit of an accident really. I had a research interest in childhood obesity but took a research position funded by Martin House Children’s Hospice in 2008 whilst I completed my PhD. I quickly realised that undertaking research that could influence policy and practice would help many more children and families than direct clinical practice. Through our work we have secured funding from Martin House Children’s Hospice for a research centre to undertake and disseminate high-quality research on children and young people with life-limiting conditions, their families and staff who care for and support this population (www.york.ac.uk/mhrc). 

You are very well known for your work on prevalence in paediatric palliative care, can you tell us more about this work? How has this made a difference in the UK and beyond?

LF: Our work on the prevalence of life-limiting conditions has been used widely by charities for advocating purposes and is also quoted in many policy documents including the recent NICE (National Institute For Health And Care Excellence) Guidance for end of life care for infants, children and young people. Our recent ‘ChiSP’ study in Scotland was one of the pieces of evidence that resulted in the Scottish Government pledging an increase in funding to Children’s Hospice Association Scotland of £30 million. 

I am also aware of the methodology that we used for these studies has been replicated in several other countries including Belgium, Kuwait and South Korea.  

Dr Lorna Fraser (right) receiving the 2018 EAPC Post-Doctoral Award from Dr Cinzia Brunelli yesterday in Bern, 25 May 2018.

Could you tell us something about your research interest in equal access to services for children and young people? 

LF: I get very frustrated when I speak to parents of children with life-limiting conditions and they talk about all the difficulties that they have in getting the correct care or equipment that they require for their child.

All children and families should have access to health care, including palliative care, where and when they need it. In the UK we have a large number of children’s hospices, funded in the charity sector, but no national strategy for the development or delivery of paediatric palliative care. Therefore we still have tertiary children’s hospitals without specialist paediatric palliative care teams and areas of the country without 24/7 community nursing cover. 

Can you summarise the most important lessons you have learned from children and adolescents approaching end of life? 

LF: This is a tricky question as most of my work to date has been with data and not the children and young people themselves. We had a group of young people at our recent research prioritisation day and I was very impressed with them speaking up and telling the professionals that what was important to them was very different to what was important to the professionals! The young people prioritised pre and post bereavement support with a real emphasis on providing spiritual and religious support.

What does winning the EAPC Post-Doctoral Award mean to you? 

LF: It is a great honour to have been chosen to receive this award. Paediatric palliative care research is not often highlighted as being important, so to have the work of myself and my team recognised by the EAPC is excellent.   

And finally, if you had not followed a career in medicine, what would you be?  

LF: I would definitely have been a vet.


Breaking news …
For the first time ever at an EAPC World Congress, there will be a Children’s Palliative Care Day held in parallel at the 16thEAPC World Congress in Berlin 23 to 25 May 2019.

Posted in CHILDREN'S PALLIATIVE CARE, EAPC ACTIVITIES, EAPC Researcher Awards, EAPC World Research Congresses, INTERVIEWS & TRIBUTES | Tagged , | Leave a comment

So Palliative Care Works: What now? Achieving the Routine Integration of Palliative Care in Clinical Practice – An interview with Anna Collins, winner of the 2018 EAPC Early Researcher Award

Highlights of every EAPC Congress are the EAPC Researcher Awards, which recognise and support the work of scientists and clinicians who make an outstanding contribution to palliative care research. 

We talk to Anna Collins, winner of the 2018 EAPC Early Researcher Award, about her work as a Research Fellow at the VCCC Palliative Medicine Research Group, Department of Medicine, St Vincent’s Hospital Melbourne, University of Melbourne Australia.

What do you mean by ‘routine integration’ of palliative care?

Ms Anna Collins

Anna Collins: Current practice typically involves palliative care being ‘integrated’ into a person’s care based upon clinician-identified need. Imagine that in addition to this system of access based upon need, clinician decision-making could be augmented such that palliative care is automatically or ‘routinely’ integrated according to ‘triggers’ or standardised times in an illness course. These standardised times would be based upon a person’s interaction with the health system and occur when population-level data suggests greater needs are expected to follow.

Having standardised times where palliative care referral is routinely considered may also reduce the barriers for patients, given it is ‘routine’ for all and represents best quality care at this time – instead of something ‘special’ required by the individual person. In my work, the concept of palliative care for ‘me’ and its understood implications – as opposed to the concept of palliative care in general terms – was the most difficult barrier for patients to overcome. Importantly, the idea of ‘routine’ integration would enable palliative care to be recognised not as ‘elective’ or an optional extra, but simply a component of quality care.

Where did you find the highest barriers towards initiating palliative care – with patients, family or staff members?

 AC: I think the biggest barrier across all parts of the system is knowing when and how to raise palliative care – for patients and families who have limited understanding and fear the meaning of palliative care, for colleagues who fear upsetting patients, and perhaps for palliative care clinicians who fear how we will keep pace with the broadening demand for service.

Speaking with patients and families about palliative care for the first time does often raise many questions. Yet, most of these questions are readily addressed by describing the practices of palliative care, and the evidence to support the outcomes associated with this additional layer of support. I find that once people understand palliative care in these terms, most are quite eager to make sure they get access to this. All people, especially those facing serious illness, want quality care – but most people do not understand what this care looks like, or how to get it. It’s our job to make sure people have access to the right information at the right time so that they are able to make their own informed choices about the care they receive.

Anna delivering her plenary lecture at the 10th EAPC World Research Congress in Bern today, 25 May 2018.

Can you tell us more about your special interest in public education programmes in palliative care?

AC: I think palliative care has an important role to play in community education and also a broader societal discussion around how we live and die well. People with serious illness are ultimately cared for in communities, and so, the community is – and has always been – a very important partner for palliative care. The role of community in caring for our sick and frail will only become more important as our population ages, and the number of deaths from chronic illness increases.

Our role in public education also speaks to a bigger issue about equity. Care for those with serious illness should not be based on luck – if your doctor is comfortable to have these difficult conversations, if your doctor is knowledgeable about the evidence for best practice, or if your doctor identifies you as a person with “palliative care needs”. My research has shown the inherently negative discourse that surrounds palliative care, which is seemingly based upon people’s fear and avoidance of death. Thus, starting education in the community before a person is himself or herself facing an unimaginable future, may mean that when this time happens for their sister, their father, or even themself – palliative care is understood as an essential component of routine quality care. In doing so, hopefully, we empower the community to drive change to health systems – similar to when palliative care began.

Who, or what, inspired you to follow a career in palliative care research?

AC: A career in palliative care research initially began somewhat by chance. Starting out in psycho-oncology, palliative care was an obvious area where people face significant psychosocial needs. I first became involved in the development of a model of supportive and palliative care for people with high-grade glioma led by Professor Jennifer Philip.

The high-grade glioma illness is one of significant challenge – great uncertainty, all the complexities of a neuro-oncological trajectory, and for some – rapid change and deterioration. The stories of patients and carers that were shared with me through this work were perhaps my first experience of the realities of what it means to live with an incurable illness. 

I still recall being particularly struck by one man’s story, shared with me just days before he died. Despite having a loving and supportive family, this man –immobile with a marked tumour-related paralysis – described how his loneliness in these times was countered by the sound of the air mattress gently humming, as the air was slowly inflated from one side of the bed to the other. He wasn’t afraid of death, but he greatly feared the pain of talking to those he loved most about dying and their life after his death. And so, I find it compelling to think that the nature of this man’s greatest pain at this time was of a sort that perhaps could have been ‘cured’. With this understanding, came a passion for improving the way we provide care and also the way in which our community responds to those in their moments of profound vulnerability.

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

AC: This award is a tremendous honour. The opportunity to share some of my work with many international colleagues is certainly a career high. Living in Australia, we are physically located a long way from other innovative work occurring in Europe, North America and other parts of the world. Yet, Australia has high-quality palliative care services and many Australian colleagues are doing really pioneering work in palliative care. It is terrific to bring some attention to a little of what’s happening in palliative care research ‘down under’.   

Do you have any tips for other young researchers?

AC: My biggest tip to other young researchers is to find a generous mentor that is willing to support your career development. All the best research happens in a team, and when you are early in your career, it’s especially hard to effect real change or even know where to start. A research career doesn’t come without hard work, but being connected with a productive team and mentor means you will likely be presented with more opportunities to develop your ideas and skills. And, it’s certainly more fun!

Apart from this, I think you have to be willing to put yourself out there, say yes to things that come your way, and learn to trust your colleagues enough to send your work for review before it’s perfect. It’s easy to find yourself ’stuck’ and the most efficient way to move forward is to look to your peers to input their ideas or challenge you. 

And finally, outside of palliative care, what do you like to do to relax and unwind?

AC: Growing up on a farm in Australia, I love the outdoors and relish open space. Running, yoga and growing veggies is my idea of fun.


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Integrating palliative care aside curative treatment in hemato-oncological diseases  – An interview with Dr Thomas W LeBlanc, winner of the 2018 EAPC Clinical Impact Award


Highlights of every EAPC Congress are the EAPC Researcher Awards, which recognise and support the work of scientists and clinicians who make an outstanding contribution to palliative care research.  

Earlier today, Dr Thomas W LeBlanc, Associate Professor of Medicine at Duke University School of Medicine, North Carolina, USA, received the 2018 EAPC Clinical Impact Award. Here, he talks about his work as medical oncologist, palliative care physician and patient experience researcher. 

Dr Thomas LeBlanc receives the 2018 EAPC Clinical Impact Award from Professor Steffen Eychmüller at the 10th EAPC World Research Congress in Bern, Switzerland. Photograph by Lukas Lehmann.

What is your main research interest?

Dr TW LeBlanc: The primary focus of my research is to generate greater understanding about what patients go through when facing a serious illness, and to develop and test interventions that improve upon their experiences of illness. Since I’m a practising oncologist and leukaemia specialist, my work often focuses on patients with hematologic malignancies, and their caregivers.

Can you tell us a little more about this? In particular, how your research explores the experience of patients and families?

TWLThere’s so much more to medicine than just the biology. I’ve long been interested in what many would call the ‘softer sciences’ for they examine many of the more profound issues that drive patients’ experiences of illness. For example, I often think about how we can help patients and families better understand their medical situation, how we can improve our communication of complex information, and also how we can better support them emotionally as they attempt to cope with difficult news. Similarly, some of my work examines patients’ experiences much more tangibly, around issues of symptom burden, overall quality of life, and psychological distress. These are objectively measurable constructs, yet they are also much less tangible in the clinic than a blood chemistry or a platelet count. Despite this, these factors are just as important to that person, perhaps more so, than the biomedical, at least in terms of how they feel and how they experience their illness each day. Ultimately, this is what my research is all about.

What was the most unexpected finding in your recent research projects?

TWL: What often surprises me the most is what’s said, or not said, to patients and families during a clinical encounter. Listening to audio recordings of these encounters is fascinating, especially when one has the subsequent opportunity to talk with the patients and the clinicians separately about what they were thinking about at the time, and how they experienced that encounter. So much goes unsaid, or just isn’t heard, or perhaps isn’t understood as intended. It has given me a great appreciation for how difficult it is to convey complex information in ways that patients can fully understand and apply to their lives and to do so with empathy and compassion.

A corollary is that I’m also often surprised at how little we really understand about what our patients go through. As someone who prescribes high-dose chemotherapies to patients with acute leukaemias, who has seen and managed the resultant side effects, I thought I had a pretty good grasp on what my patients are facing. But when we applied objective scales to this population, to assess symptoms, quality of life, and distress, and then interviewed many of these patients over time, I learned that things are often much worse than I had thought (and worse than my patients were willing to tell me).

This has made it very clear to me that palliative care and patient experience research are sorely needed in medicine, particularly in cancer care, and that there remain many opportunities to improve upon standard care practices in supporting patients and families through these difficult experiences.

Who or what inspired you to take up work in this area?

TWL: Ultimately, what inspired me to work in palliative care, oncology, and patient experience research was a series of rather awful experiences I had as a medical student and trainee. I repeatedly saw people die in ways they wouldn’t have wanted, on machines, in the hospital, away from home, with diseases that everyone knew weren’t going to get better with aggressive care. I saw conflict, poor communication and sometimes, even arguments, between incredibly hard-working, caring, brilliant clinicians, and similarly loving, caring family members. And though I often asked “why?” I never heard a satisfactory answer. So I set my sights on trying to figure out a way to do something about it.  

I’ve also been very fortunate to learn from some incredible people over the years, and they’ve played a central role in inspiring me to do what I do. While I cannot name them all, there have been two particularly influential mentors who have made my early career successes possible. Amy Abernethy, who put palliative care clinical trials on the map in the US, taught me so much about how to do research, how to write, how to mentor, and how to lead. Similarly, James Tulsky has played a very influential and formative role in my career path. Before meeting James, I hadn’t even heard of palliative care. I also hadn’t realized I could actually study what happens in the examination room, and that what people say (and how they say it) can be rigorously studied, or that clinicians can be trained in communicating well (and it actually works!).

These insights transformed me from someone who thought they hated research (because to me that just meant pipetting things in the lab), to a person who proudly wears the badge of ‘researcher’ today.

You have achieved a great deal in a short time. What were some of the unexpected hurdles and what were some of the unexpected benefits you have encountered?

TWL: Career paths in academic medicine are quite circuitous, by definition. My path has been no less winding and perhaps is a bit more tortuous than that of others. What perhaps surprised me the most over the years though is the realization that medicine affords us with a tremendously wide range of opportunities, such that nearly anything is possible. If you have an idea, and you can convince others of its importance (and thus get funding for it!), then you can make it the focus of your work. And if it doesn’t work out, there are so many other opportunities to change direction.

I’ve met many people who’ve had three or four different ‘careers’ in medicine, from education, to research, to administration, and even industry, with marked changes in their paths over time. There are few other jobs where that’s possible. And there are even fewer where one is afforded the privilege of being able to enter into people’s lives during a difficult, emotional time, and to be able to do something that makes a significant difference. It’s so incredibly rewarding to practise medicine, and for me, applied research is just an extension of that. I hadn’t anticipated some of these remarkable benefits and experiences years ago as a premedical student. Now, I can’t imagine doing anything else.

You are actively involved in teaching medical students at Duke. What is the most important message that you would pass on to someone who is just starting out on a career in palliative care?

TWL: There are so many important messages that I try to convey to students and trainees, but perhaps most important of all is this:

Figure out what really bothers you, what you want to change in the world, and what you’d like to fix about medicine, and make that the focus of your life’s work. James said something like this to me many years ago, and it has since resonated with me as some of the best advice I’ve ever received. 

What does winning the EAPC Clinical Impact Award mean to you?

TWL: This is really a wonderful honour, and frankly, it’s the type of thing I never expected would be a part of my story. As I reflect upon the path I’ve travelled to get to this point, to me this Award is a sign that I haven’t veered too far off track from something that’s important in the world. It energizes me to continue working hard to improve the lives of people facing serious illness and to increasingly teach and mentor others in doing this kind of work. I’m so very appreciative to the EAPC for this recognition, and am thankful to all those who have helped me along the way and made this possible.


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The changing face of volunteering in hospice and palliative care– new book launches at 10th EAPC World Research Congress

Dr Ros Scott, Co-Chair European Association for Palliative Care Task Force on Volunteering, and Dr Steven Howlett, Deputy Director, Roehampton University Business School, are co-editors of a new book that explores the complex phenomenon that is volunteering in hospice and palliative care in different countries.

Dr Steven Howlett

Ros Scott

Dr Ros Scott

Volunteering has always been a vital part of hospice and palliative care; in many countries initiating and contributing to the development of services and in others the only way of delivering care to those with palliative and end-of-life needs. Yet, however vital, these community members who volunteer their time are seldom part of mainstream discussions and debates about the future of hospice and palliative care. It often seems that there is an assumption that volunteers have always been there and so will continue to be there in the future. But can we depend on this?

Some time ago, we were reflecting on just this and how volunteering in hospice and palliative has changed in recent years. Our discussion was set in the context of the rapidly growing demand for hospice and palliative care as a result of people in many countries living longer. It seemed to us that organisational interest in volunteering was growing as services began to look more and more to volunteers to help them to address this need. However, was there also the understanding that volunteering is also in a state of flux?

How and why is volunteering changing? – and other questions

As society changes and the time that people have to give to volunteering becomes less, volunteers’ expectations subsequently change. It was at this point that the idea for a book exploring the changing nature of hospice and palliative care volunteering was born. We had so many questions that we wanted to explore. How had volunteering developed historically in different countries? What were the legislative and political influences that affected volunteering and do they help or hinder? We also began to wonder what we could learn from the approaches to management and training in different countries. How and why was volunteering changing, and what are the resulting implications for hospice and palliative care services, both now and in the future?

We wanted to explore the well-established community-led volunteering models in India and Africa and to consider how community-led programmes work in other countries. Most importantly, what of the volunteers themselves? Volunteer narratives are often told by paid staff, but we wanted to hear from the volunteers themselves – what is it like to be a volunteer today in hospice and palliative care in different countries?

We are indebted to the experts from Eastern and Western Europe, North America, Australia, India and Africa who so willingly contributed their insights, to answer these many questions; who shared with us their thoughts on the factors that contribute to the success of volunteering and helped to shape this book. Also, to the volunteers themselves who shared their personal experiences so openly. We are delighted that the book, The Changing Face of Volunteering in Hospice and Palliative Care: An international perspective, is to be launched at the 10th EAPC World Research Congress in Bern where so many of the chapter authors will be present.

If you’re attending the Congress, do please join us at the EAPC stand at 13.00 on Friday 25 May for the launch.

Links and resources

  • The Changing Face of Volunteering in Hospice and Palliative Care: An international perspective, edited by Ros Scott and Steven Howlett, is published by Oxford University Press, April 2018. ISBN: 9780198788270.

10th EAPC World Research CongressMore about the 10thEAPC World Research Congress

The 10th EAPC World Research Congress takes places in Bern, Switzerland, on 24 to 26 May 2018. Download the final programme and abstracts from the congress website.

Follow all the Congress activity at #EAPC2018

Follow the EAPC Blog for posts in the run-up to Congress.


Posted in EAPC ACTIVITIES, EAPC Taskforces/special projects, EAPC World Research Congresses, VOLUNTEERING IN PALLIATIVE CARE | Tagged | Leave a comment

Future-proofing Dame Cicely Saunders’ Centenary of Change: Integrating Research, Education and Clinical Care

This year’s 10th EAPC World Research Congress celebrates important milestones for palliative care in Europe and the world: 20 years of the EAPC Research Network, the 30th anniversary of the EAPC, as well as the commemoration of the 100th birthday of Dame Cicely Saunders. 

Today, Irene Higginson, Professor of Palliative Care and Policy, King’s College London, and Director, Cicely Saunders Institute, London, UK, gives a glimpse of the Vittorio Ventafridda Lecture 2018 that she will give at the Congress in Bern on Thursday 24 May 2018.

Professor Irene Higginson

I am honoured to give the keynote lecture at the 10th World Research Congress of the European Association for Palliative Care, in honour of Professor Vittorio Ventrafridda, especially in this the centenary year of Dame Cicely Saunders. Vittorio’s centenary year will be 2027. I hope then, that in 11 years’ time, we will be celebrating even more achievements.

I was privileged to know Vittorio and work with him on several World Health Organization projects and ensuing books. In our projects together, Vittorio worked and discussed ardently, and passed his enthusiasm to many of us who were engaged in writing, reviewing, collating the World Health Organization Solid Facts booklets with him. (You can download the resulting booklets here.)

I remember visiting Vittorio’s apartment in Nice one year to spend our summer holidays working and planning the content. His wife, Maria, was very hospitable and patient with us all.





Vittorio Ventafridda Lecture 2018 Integrating Research, Education and Clinical Care

In the lecture, I was asked to focus on the development of the research agenda at the Cicely Saunders Institute. I also reflect on how we integrate research, education and clinical care – something many aim for. We are facing a changing landscape of care and treatment – where have we come from and where care is going in future years – what are the population, discovery, care service and technological challenges and opportunities ahead.

Research to achieve the best in care

Achieving the best for patients and families requires the best in care, and this means delivering evidence-based practice. Evidence-based practice relies on high-quality research evidence, integrated with clinical expertise and patient and family preferences. However, evidence is often lacking. When robust evidence for a symptom is lacking clinicians often provide medicines ‘off-label’ (i.e. use pharmaceutical drugs for an unapproved indication or in an unapproved group, dosage, or administration), rather than do nothing. One study, in a highly regarded palliative care unit, found that around one third of prescriptions were ‘off-label’; breathlessness was one of the most common indications for off-label prescribing (n = 449, 20%).1Yet, as we have learned from recent research, some medicines that have been widely prompted have limited or no effectiveness.2

An even greater challenge exists for the development of services, educational programmes and tools used in practice. Here, there are many examples where clinicians and policymakers have implemented locally, nationally and even internationally, without evidence, on the basis that the intervention “seems like a good idea,” or on small, single reports, often arguing that “something must be done”.

Innovation and proper study

But we need both innovation and proper study; without both, the best for patients and families will not be realised. Risks of poor evaluation prior to such implementation include diverting resources from other things that would be effective, poor implementation, lack of credibility of the specialty and, more seriously, patient or family harms that outweigh benefits.

There is an even more basic reason for conducting research; evidence finds that research-active healthcare services deliver better care, even for people who are not recruited into studies.3  Thus, if clinical services want to offer the best in care, research should be a core part of their activity.

Integrating clinical care, research and education

To reflect on the past, I have been fortunate to find a correspondence between Cicely and Vittorio from 1986, in response to the article led by Vittorio and published in the Journal of Pain and Symptom Management of that year.It is interesting to see how they discuss the issues of clinical relevance and how evidence is critical for practice. The correspondence can be found in the Dame Cicely Saunders archives at King’s College London, an archive that was so diligently prepared by Professor David Clark. The correspondence debates the use of methadone, something about which Vittorio reported in three published studies, including with international colleagues, such as Professors Eduardo Bruera and Robin Fainsinger, and his local team, including Dr Franco De Conno.4-6 Research into the best use of methadone continues today.7-9   

Integrating clinical care, research and education is often what patients and families want.10 And this can be achieved. There are many examples of landmark research with randomised and observational designs, even this year, which are already transforming care.11-24 Many issues that we are already tackling in palliative care are relevant to the future of much of health and social care; which is now waking up to issues we have grappled with for a long time, like complexity, multimorbidity and patient and family choice.25-31

The science of palliative care, the science that puts the person before their disease(s), coupled with its clinical innovations, has much to offer the wider ‘ologies’. We have many approaches, measurement tools, knowledge and skills that are relevant. Can we become equipped or prepared to pick up the challenge and opportunity of such a central role?

Links and references

10th EAPC World Research CongressProfessor Irene Higginson will give the keynote lecture: Future-proofing Dame Cicely  Saunders’ Centenary of Change: Integrating research, education and clinical care at 10.40 on Thursday 24 May at the 10th EAPC World Research Congress in Bern.

View the abstract for Irene’s lecture, and all other abstracts for the 10th EAPC World Research Congress, in Palliative Medicine, volume: 32 issue: 1_suppl, page(s): 3-330. https://doi.org/10.1177/0269216318769196


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New insights in various impacts of advance care planning

More from members of the ACTION Consortium about their European study that aims to investigate how to support people with advanced cancer to have a conversation about preferences and wishes.  And if you’re attending the 10th EAPC World Research Congress this week in Bern, come along to the ACTION presentations . . .

Left to right: Branka Červ, Hana Kodba Čeh and Urška Lunder.

Hana Kodba Čeh, a psychologist currently working as a researcher with ‘Team Slovenia’, discusses the recent evidence on various impacts of advance care planning on end-of-life management in a broader sense. Together with Branka Červ, nurse, and Urška Lunder, MD, she discusses advance care planning in Slovenia and summarizes some key points from their review article recently published in Current Opinion in Supportive and Palliative Care. A brief discussion on Slovene situation opens this short report.

Advance care planning (ACP) is still an unknown concept for most people in Slovenia, although a legal document as an advance directive was introduced in 2008. People can express their refusal of resuscitation or treatments to inform their future care. It is also possible to legally appoint a person to make such decisions on a patient’s behalf. Moreover, it seems that most physicians regard an advance directive as a valuable tool when asked specifically. Even so, observation of actual practice in Slovenia reveals that patients rarely decide to follow the process to its completion. Lengthy registration requirements and lack of public discourse can be major barriers. In settings where ACP is part of palliative care services (a few hospitals and homes for the elderly), the location of patients’ death according to their wishes was more often observed. It was found that ACP might impact better control of symptoms and higher satisfaction of family members. Currently, our collaboration in the ACTION project is producing a legacy of knowledge and practical tools for conducting ACP conversation for patients by different healthcare professional groups.

Now let us list some important points we raised in the article, based on recent research and then discuss them in more detail:

  • Completion of advance directive forms, hospital admission rates and patients’ and families’ views and experiences are the most common outcome measures in recent ACP research.
  • Recent, mostly descriptive studies on ACP explored its impact on specific groups of patients, their families, settings, staff, and countries.
  • It is not yet clear who should best conduct ACP and when.
  • High-quality evidence of ACP impact is urgently needed due to high palliative care needs in future projections. 

Who and where? 

Since the beginning of ACP development, research on all kinds of ACP impact has been increasingly produced almost all over the world. Despite increased attention to the concept of ACP, it is difficult to convert evidence into a consistent and reliable ACP model covering all patient groups in different healthcare settings.

The reasons for delays in implementation of ACP are multi-layered. Solutions are required on a system-level. Looking at the evidence drawn from recent studies, we identified discomfort with death and dying, confusion of role responsibilities and lack of coordinated care among settings as most important barriers for end-of-life discussions and decision-making. Whose responsibility is ACP anyway?

Ideally, ACP is a team effort of everyone involved in the patient’s journey across a variety of settings during the course of illness. Nevertheless, some feel that general practitioners are core providers since they are well placed between the ACP process and the patient’s interpersonal context (e.g. Waller et al., 2017). Others view it as a process that is not separate from elements of specialty care, sometimes including complex aspects of medical treatment for specific patient groups. Respiratory specialists are recognized as crucial in providing ACP in patients with chronic obstructive pulmonary disease (COPD) since they can help patients to explore future treatment options about mechanical ventilation, intubation and tracheotomy.

An Italian study published last year had quite surprising results regarding the retention of the information following discussions with a respiratory specialist. It turned out that more than half of the patients did not remember information regarding end-of-life conversations held a day before, even though it concerned repeated conversations, and explanations were given in simple language (Carlucci et al., 2016).

Keeping in mind that it is hard to consider abstract and hypothetical events, preparing patients and surrogates to make in-the-moment decisions seems to be a step forward in helping them to make truly informed decisions when they arise (e.g. Sudore & Fried, 2010).

References and resources

Weathers E, O’Caomh R, Cornally N, Fitzgerald C et al. Advance care planning: A systematic review of randomized controlled trials conducted with older adults. Maturitas 91, 2016; 101-109.

Carlucci A, Vitacca M, Malovini A, Peirucci P, et al. End-of-life discussion, patient understanding and determinants of preferences in very severe COPD patients: a multicentric study. COPD: Journal of chronic obstructive pulmonary disease2016; doi: 10.3109/15412555.2016.1154034.

Read the full article in Current Opinion in Supportive and Palliative Care
This post relates to ‘Impacts of advance care planning on end of life management’ by Lunder U, Červ B, Kodba-Čeh H, published in Current Opinion in Supportive and Palliative Care, 2017; 11 (4). (You will need a subscription to read this article).


10th EAPC World Research CongressMembers of the ACTION Consortium will be presenting at the 10TH EAPC World Research Congress …

  • Ida Korfage: Involvement in Medical Decision-making by a Cohort of Patients with Advanced Cancer across Six European Countries, the ACTION study, Friday May 25, 14.45-15.00.
  • Lea Jabbarian: Relative Validity of an Emotional Functioning Short Form based on the EORTC Computerized Adaptive Testing Item bank in the international ACTION study, on Saturday May 26 at 11.00-11.15.
  • Glenys Caswell: Qualitative Exploration of Advance Care Planning Conversations: Experiences from the ACTION Study, Saturday May 26 at 09.30-9.45.
  • Check out the latest programme for the 10th EAPC World Research Congress here.
Posted in ACTION, Advance care planning, RESEARCH | Tagged , | 1 Comment

Cicely Saunders – celebrating a centenary

This year’s 10th EAPC World Research Congress celebrates important milestones for palliative care in Europe and the world: 20 years of the EAPC Research Network, the 30th anniversary of the EAPC, as well as the commemoration of the 100th birthday of Dame Cicely Saunders. 

Today, David Clark, Wellcome Trust Investigator and Professor of Medical Sociology, University of Glasgow, UK, gives a glimpse of the plenary lecture that he will give at the congress in Bern on Saturday 26 May 2018 to salute the achievements of Cicely Saunders.

Professor David Clark

It was a cool, damp British summer when Cicely Saunders was born on 22 June 1918, in a modest family home in North London. The First World War was coming to an end but Europe was to remain a troubled place and global conflict was soon not far away again.

Despite these turbulent times, Cicely grew up in a family that was on an upward curve of prosperity. She and her two younger brothers attended private schools and each of them went on to study in ‘Oxbridge’ colleges.

Dame Cicely Saunders, OM, Founder and President of St Christopher’s Hospice. Photograph by Carolyn Djanogly. With kind permission of St Christopher’s Hospice.

But for Cicely, academic endeavour soon took second place to active service for others. She left Oxford, trained as a nurse and thus embarked upon a remarkable journey through the caring professions, as she moved into social work and eventually medicine. She qualified as a doctor in 1958 from St Thomas’s Hospital, opposite the Houses of Parliament on the banks of the river Thames.

Already, her clinical experience had drawn her more and more to the needs of dying people and their families. Some intense relationships with dying and chronically ill patients fuelled her sense of passion and commitment. She had become passionate about the need to understand and control pain.

As a newly qualified doctor she therefore chose to work as a research fellow in one of London’s original hospices for the dying – St Joseph’s, in Hackney. Here, she honed her skills and crafted a vision for a new approach to ‘terminal care’. Within a few years she launched a campaign to create St Christopher’s Hospice – a place where high-level clinical work would be underpinned by research and education in a new model of care.

She found a handful of fellow enthusiasts in Britain and around the world. Together they set in train a ‘quiet revolution’ that not only created a hospice ‘movement’, but also laid the foundations for modern palliative care.

Her life was rich in religious faith and in her wide-ranging interests in music, literature, and the visual arts. She had a determination to improve care at the end of life which was world-changing in its dimensions.

Cicely Saunders died in 2005. I was fortunate to work with her for the last decade of her life, editing her letters and papers and making provision for the full cataloguing of her papers. In my lecture at the EAPC Congress in Bern on 26 May, I will be describing and saluting her achievements. I will also be arguing for more attention to her enduring importance and exploring how she remains a source of inspiration and fascination today. There is much still to be understood about and to be learned from her.

I will draw on my newly completed biography – Cicely Saunders – a life and legacy, which is being published by Oxford University Press. The book will be ‘launched’ on 22 June in the hospice that Cicely founded – St Christopher’s, in Sydenham, South London – on the 100thanniversary of her birth.

10th EAPC World Research CongressProfessor David Clark will give his plenary lecture: On the centenary of Cicely Saunders’ birth – celebration, reflection and further possibilities, at 14h00 on Saturday 26 May at the 10thEAPC World Research Congress in Bern

View the abstract for David’s lecture, and all other abstracts for the 10th EAPC World Research Congress, in Palliative Medicine, volume: 32 issue: 1_suppl, page(s): 3-330.


  • Contact David Clark by email.
  • Twitter @dumfriesshire
  • The Glasgow End of Life Studies Group – looks at end of life issues from an interdisciplinary perspective.
  • Follow David’s daily posts and tweets on Facebook and Twitter commemorating the life and work of Cicely Saunders. A wonderful store of thoughts and events @dumfriesshire
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