World Hospice and Palliative Care Day 2015

WORLD DAY 2015Hidden Lives/Hidden Patients is the theme of this year’s World Hospice and Palliative Care Day. But just who are the hidden patients, and why are so many marginalised people not accessing palliative care? Dr Liz Gwyther, Chair of the Worldwide Hospice Palliative Care Alliance (WHPCA), which organises the event, explains and urges you all to get involved on 10 October…

Dr Liz Gwyther

Dr Liz Gwyther

World Hospice and Palliative Care Day is a day of action and awareness to celebrate and support hospice and palliative care around the world. It is organised annually on the second Saturday in October by the Worldwide Hospice Palliative Care Alliance (WHPCA). The WHPCA has a five-year strategy involving each World Day leading up to the 2017 theme of: ‘Universal Access to Palliative Care’.

This strategy started in 2013 with the theme: ‘Dispelling the Myths’, aiming to debunk misconceptions about hospice and palliative care by providing facts to explain this care. The 2014 theme of: ‘Who Cares? We do’ explored which staff, family and volunteers provide care. It also challenged people to consider whether they care about hospice and palliative care and the people requiring this service.

The question still applies as evidenced by the fact that palliative care is integrated into healthcare systems in only 20 of 234 (8.5%) countries worldwide. Approximately 80% of the world’s population lacks access to essential palliative care medication. Who cares about this limited access to palliative care?

Butterfly Children's Hospices care for abandoned babies in China (with kind permission of Butterfly Children's Hospices)

Butterfly Children’s Hospices care for abandoned babies in China (with kind permission of Butterfly Children’s Hospices)

Who are the hidden patients?
The theme for World Day 2015 is: ‘Hidden Lives / Hidden Patients’, intending to create awareness about people who find it particularly difficult to access palliative care. This year, WHPCA welcomes the International Children’s Palliative Care Network (ICPCN) as a partner in organising World Day, the theme of which is so relevant to children, who are all too often ‘Hidden Patients’.

ICPCN estimates that more than 20 million children globally would benefit from palliative care. Access to palliative care may be challenging for children as people are not fully aware of the role of palliative care in caring for children with chronic disorders, thinking of palliative care as only end-of-life care. There is still a misperception that starting palliative care is a ‘giving up’ on the patient, not recognising the comprehensive care provided through palliative care.

The ‘Hidden Lives Hidden patients’ theme also highlights other marginalised people who do not access palliative care. People with disabilities could benefit from palliative care with care and support to enable active living with the disability, and the provision of end-of-life care if needed.

Deaf participants take part in palliative care training in Uganda (with kind permission of Palliative Care Association of Uganda)

Deaf participants take part in palliative care training in Uganda (with kind permission of Palliative Care Association of Uganda)

People living with HIV have many challenges, from the time of diagnosis and adjusting to this new reality, to managing symptoms of the illness, while anti-retroviral treatment restores physical health to realise healthy living with HIV. Palliative care services also assist in adherence to the medication that has made such a difference to people infected with HIV.

The lesbian, gay, bisexual, and transgender (LGBT) community still faces discrimination in everyday life in many communities and this includes access to health services. The WHPCA protests that many countries criminalise homosexuality and takes the opportunity of World Day to highlight this abuse of human rights and to advocate for abolishing laws that criminalise homosexuality.

Palliative care may be difficult to access for people living in rural areas and national hospice palliative care associations are working to improve this access. The World Health Organization resolution: ‘Strengthening of palliative care as a component of comprehensive care throughout the life course’ urges governments to ensure the training of all healthcare workers in palliative care.

A group of concerned palliative care leaders have established a network for Palliative Care in Complex Humanitarian Emergencies (PALCHE) to help people requiring palliative care when affected by emergency situations such as war or natural disaster.

People in prisons may also be ‘Hidden Patients’ although many countries are developing palliative care programmes to train prison medical staff and inmates in palliative care.

In working towards the 2017 theme of Universal Access to Palliative Care, we have a synergy with the United Nations Sustainable Development Goals (SDGs) inclusion of Universal Health Care as an SDG. Universal Health Coverage is defined as ensuring that all people can use the promotive, preventive, curative, rehabilitative and palliative health services they need, which are of sufficient quality to be effective, while also ensuring that the use of these services does not expose the user to financial hardship.

To register a World Day event in your country, or to read about World Day activities, please visit the website and see how you can become involved on 10 October.

Coming up on the EAPC Blog…
We shall be publishing more stories about this year’s World Hospice and Palliative Care Day in the next few days and weeks.



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Dying in the hospital setting – can we deliver what patients and families need?

Claudia Virdun, Deputy Associate Dean, (Teaching and Learning), Lecturer, PhD candidate, Faculty of Health, University of Technology, Sydney, Australia, explains the background to her longer research article selected as ‘Editor’s choice’ in the October issue of Palliative Medicine.

Claudia Virdun

Claudia Virdun

Throughout my 15 years as a predominately inpatient specialist palliative care nurse I witnessed wide variability in end-of-life care, from excellent through to poor. I have chosen to focus my PhD studies on reducing this variability by considering large- scale improvement strategies to enable systematic and sustainable improvements in end-of-life care within the hospital setting. This programme of research focuses on identifying the elements of end-of-life care that are most important to hospitalised patients with palliative care needs and their families.

Central to this work has been identifying and understanding what patients with palliative care needs and their families consider is important for optimal care. The first step has been to examine the evidence from studies reporting quantitative data (Virdun, Luckett, Davidson, & Phillips, 2015). 1 There are no real surprises about the areas of highest importance with these centring around: good communication and shared decision-making, good physical care, optimal symptom assessment and management, integrated care, respectful and compassionate care and trust and confidence in staff (Virdun et al., 2015). What is surprising, is that patients and families have consistently reported very similar messages about what they considered to be important for the past 25 years (Kristjanson, 1989) and we have largely failed to address their concerns. A recent integrative review focusing on patient experience (Robinson, Gott, & Ingleton, 2014) has also voiced similar concerns that our acute hospitals are failing to deliver the care identified as most important for those with palliative care needs. It is wrong to continue asking patients and families what they need, and not to act. While we understand what is needed, it is evident we struggle to know how to enable this in an environment dominated by acute and episodic care. Re-orientating our healthcare systems to ensure the care provided for people with palliative care needs and their families aligns with that which is important, is a necessary next step. Indeed, when I look at the core areas of importance noted, these are tenets of excellent care for all, irrespective of diagnosis, and so a system change to drive such outcomes need not focus purely on those patients identified as being close to the end of their life.

I propose the design, testing and subsequent implementation of measures tied to national accreditation that centre on the areas of importance for patients with palliative care needs and their families. I feel this will enable a heightened awareness of such needs that will filter to the real delivery of care – hoping to ensure every individual has access to care that resonates with that which is important for them. This systematic review is the first step in informing such measure development.

1. Virdun, C, Luckett, T, Davidson, PM and Phillips J. (2015). Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important. Palliative Medicine, Vol 29 (9) p.774 – 796. Published online before print April 28, 2015, doi: 10.1177/0269216315583032.

9.coverDownload a free copy of the full article
This post relates to a longer article, ‘Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important’, by Claudia Virdun et al., published in Palliat Med October 2015 vol. 29 (9) 774–796.

EAPC members and registered users of the EAPC website can download a free copy of this article and other ‘Editor’s choice’ papers from the EAPC website. (If you need to register or login to download this paper please follow the instructions in the top right-hand corner of EAPC home page and scroll down to the article). Click here to view other EAPC-originated papers.

If you’ve enjoyed this post you may be interested to read about the Irish Hospice Foundation’s ‘Hospice Friendly Hospitals’ programme, which aims to improve the end of life care experience for patients and families in the acute sector. 

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Palliative care measurement: Helping to scale up palliative care and deliver good care

Prof Claudia Bausewein, Director of the Department for Palliative Medicine at Munich University Hospital and Chair in Palliative Medicine at Munich University; Dr Barbara Daveson, Cicely Saunders International Lecturer in Health Services Research in Palliative Care, and Prof Irene Higginson, Director of the Cicely Saunders Institute at King’s College London, and Professor of Palliative Care and Policy, King’s College London, UK, introduce a recently published EAPC White paper.

Left to right: Dr Barbara Daveson, Prof Claudia Bausewein and Prof Irene Higginson

Left to right: Dr Barbara Daveson, Prof Claudia Bausewein and Prof Irene Higginson

Patients and families’ concerns are in the focus of all palliative care professionals with the aim to reduce burden and relief suffering. Therefore, one of the most important tasks for a clinician is to work out whether or not they have really addressed the concerns of their patients. While for researchers it can be hard to find the right measure to use to adequately investigate their research topic. Outcome measurement can help with both of these challenges. These two factors are some of the reasons behind why outcome measurement, especially patient-reported outcome measurement (PROM), is gaining increasing attention in palliative care. PROM feedback improves awareness of unmet need. It helps staff act to address patients’ needs, and also measure the difference they make. Also, outcome measurement is central to understanding different models and commonalities of care across countries and patient complexity. Given these benefits, the EAPC (European Association for Palliative Care) Task Force on Outcome Measurement, a group of 14 professionals from 11 countries, including medical, nursing and allied health disciplines, developed the EAPC White paper on ‘Outcome Measurement in Palliative Care: Improving Practice, Attaining Outcomes and Delivering Quality Services’. 1

The essential parameters of outcome measurement for both clinical practice and research are covered in this White paper, helping to firmly secure its place on any essential reading list. Examples of the recommendations include:

• Measures used in palliative and end-of-life care should be suited to the clinical task and the clinical work.

• Valid and reliable multidimensional outcome measures for patients and their family (unpaid caregivers), which have sound psychometric properties and allow for proxy assessment, should be used.

• Measures used in research should be relevant to the research question, but patient burden must also be considered when using measures in palliative and end-of-life care research.

• When outcome measures are introduced into routine clinical practice, change management principles should be used with facilitation and communication of the implementation process remaining central to this process. An evaluation of the implementation process to ensure sustained use that penetrates practice within the organisation should take place.

• As outcome measurement relates to the individual situation of patients, it should inform quality indicators that measure specific aspects of care in a population.

• To sustain routine practice of outcome measurement, quality improvement systems should be established and interoperable electronic systems used.

• Comparisons across care settings and throughout Europe will become possible if outcome measures are used widely, and this would help progress the field of palliative care. Therefore, measures that are culturally sensitive and those that have been validated in relevant languages and countries should be used. National and international outcome collaborations should be established to advance the field and allow benchmarking to establish and improve care standards.

• Policy makers should recommend routine collection of outcome data as this will help improve and monitor palliative care practice. Routinely collected data should be used to establish a minimum dataset of palliative care outcome measures to improve and advance clinical care and research.

There are already a number of recommendations on outcome measurement. Most of them relate to outcome measurement in research but this White paper focuses more on outcome measurement in clinical care and aspects of the wider policy impact of implementing outcome measurement in clinical palliative care. We hope that this White paper helps clinicians, researchers, policy makers and managers with their clinical practice, research, and also when implementing outcome measures more broadly within a service, an organisation or a region.

1. Bausewein C et al. EAPC White Paper on Outcome Measurement in Palliative Care: Improving Practice, Attaining Outcomes and Delivering Quality Services – Recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement. Palliat Med. Published online before print June 11, 2015.

Download a free copy of the EAPC White paper
Click here to download a copy of ‘Outcome Measurement in Palliative Care: Improving Practice, Attaining Outcomes and Delivering Quality Services’ from the EAPC website. 

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Competence with compassion: A palliative care experience

Cristina Cazorla, a medical student at Universitat de Lleida, Spain, explains what she gained from a clinical placement with a palliative care team.

Cristina Cazorla

Cristina Cazorla

A close family member recently confessed that he didn’t understand how anyone could devote their professional life to caring for the terminally ill and their families… in effect, palliative medicine. Frankly, I wasn’t surprised by the comment because death is still a social taboo: an awkward, scary and inevitable moment that confronts us all.

I’m a sixth-year medical student and during my month’s clinical placement with a palliative care team I have learnt that this little-known specialty is born from a real need of patients, their families and society in general. The need for someone to be alongside and provide support to improve the last moments of life and to consider the patient as a whole person and not just a disease.

A typical working day in palliative care begins around a table with review and discussion. When you see the team in action the importance of teamwork becomes clear, all of them share their knowledge and experience. Everyone has a specific function, both professionally and personally: Conchita’s insight, the decisiveness of Maite, Montse’s tact, Maria’s dedication, the sense of humour of Jaume, Pilar’s sensitivity, and the spontaneity of Rosa. Treatments and diagnostic tests gain or lose importance only if they provide a clear benefit to the patient’s situation.

The palliative care team, Arnau de Vilanova Hospital, Lleida

The palliative care team, Arnau de Vilanova Hospital, Lleida


I learnt never to forget that patients at the end of life are still able to make decisions and cope with their situation provided they are given enough information. I remember one patient who felt his oncologist had not told him the truth about his condition. I agree, I too would want to be told the truth. And yet, there are professionals who simply aren’t interested in learning how to deliver bad news, to communicate or guide a patient and family at this sensitive time. In my opinion, this is an enormous failure in health care. All doctors, even palliative care doctors, feel queasy when they must inform the family or the patient that nothing more can be done. We should not be afraid of showing our feelings with patients, of letting their experiences hurt us even if they do make us think about our own vulnerability. Being sensitive doesn’t mean being weak, but rather being closer to the patient.

The art of medicine is not just about treatment options, tests and screening – things ­that are learnt with practice. What is really difficult about being a doctor is how to connect with patients, how to communicate with them taking into account their circumstances and creating confidence based on information. Building a relationship with a patient is a really complicated issue – in the context of palliative care it is essential. Watching the palliative care team was a treat for they are expert communicators. What impressed me most was the team’s ability to listen, to words as well as silences and gestures; to interpret what a patient wants to say (even if he doesn’t say it!); to understand concerns and fears; to help patients to face death without drama; to look at patients without judging; to understand the family’s role and identify resource needs; and to help patients to manage hope and expectations, based on alleviating symptoms on the worst days and enjoying the best days.

And there was also careful attention to detail: spaces in which to inform the family, language that was easy to understand, empathy, respect of a patient’s will, and therefore his freedom; and above all being alongside and letting patients know that they are not alone.

My thanks to all the palliative care team from the Arnau de Vilanova Hospital (Lleida) for giving me the opportunity to learn how you work and for all you have taught me. I felt like a member of your team…see you soon!

More personal stories on the EAPC Blog…
If you have enjoyed this post from Cristina, you may find our ‘Palliative Stories’ series of interest that includes posts from the perspective of patients and family carers.


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Improving communication training using arts based methods

Olwen Minford is an End of Life Care Facilitator who works in the community, hospitals, and care homes, seeking to improve the standards of palliative and end-of-life care for patients and carers through support and education of staff.

Olwen Minford

Olwen Minford

The United Kingdom Health Service ombudsman’s report ‘Dying Without Dignity’ 2015, makes for challenging reading and highlights examples of poor communication by healthcare professionals. The Francis report (2013) also looks at a number of cases where communication in End Of Life Care has gone wrong. There have been repeated recommendations and specifications for mandatory training in care of the dying for all staff including “communication skills training and skills for supporting families and those close to dying patients” (NCDAH, 2014).

What can we do differently?
Working as an End of Life Care Facilitator, I have noticed that fear and death anxiety is tangible and very prevalent among healthcare professionals. We pay lip service to the ‘taboo around death’ in words but how are we dealing with this in education and practice?

It is taken as a given that once staff have received the ‘education’ they will be able to engage in conversations about death and dying. The reality is quite different. Until staff are enabled to process their own feelings and experiences around death in a safe environment they are likely to remain frozen in fear and awkwardness in the clinical situation. There often remains an obstacle to engaging in discussions with patients and families.

The arts offer us an opportunity. Incorporating the arts in training can offer experiences that promote human maturing and give people permission to be vulnerable in a safe space. Helping staff to get in touch with their own vulnerability encourages them to show compassion towards others’ suffering. This can support professionals to create meaning from their encounters with distressed people and the qualities of empathy, resilience, and compassion are developed organically.

‘Dismantling the taboo around Death’ workshops are an example of experiential training that incorporate visual arts, poetry, role play, creative writing and provide staff with a language to begin to address the subject of death and dying. The expression of difficult feelings is facilitated that otherwise would remain hidden or unexpressed. Participants report increased confidence and skill in being able to initiate and sustain end of life care conversations.

As a recipient of a Winston Churchill Memorial Trust travel fellowship in 2014, I researched education programmes using the arts in USA and Australia. Many medical and some nursing schools are using art galleries and evidence-based visual arts programmes to enhance observation skills (Dolev et al 2001), increase empathy and emotional awareness of self and others. The programmes improve visual assessment and critical thinking and have an emphasis on reflection. Multidisciplinary team working is improved through inter-professional collaboration in the gallery and the clinical setting.

A radical shift is necessary to raise awareness and recognise the transformative power of the arts and the holistic value they can bring to healthcare education. By engaging the spirit in care and nourishing kindness in practice, they improve communication and compassionate care. Arts based training methods embedded in undergraduate programmes encourage emotional, relational and cognitive development of the ‘whole student’ (doctor, nurse, allied health professional). The result potentially is a more confident, reflective workforce, who are enabled to respond appropriately and sensitively to people in distress, especially at the end of their lives.

Francis, R. (2013) Report of the Mid Staffordshire NHS Foundation Trust Public Enquiry. Last accessed 22.7.15

MCPCIL (2014) National Care of The Dying Audit of Hospitals (2014) Royal College of Physicians.

Dismantling the taboo around death workshops. Last accessed 22.7.15

Winston Churchill Memorial Trust press release. Last accessed 22.7.15

Dolev J C, Friedlaendar L, Krohner M S, Braverman I M. (2001) Use of Fine Art to Enhance Visual Diagnostic Skills, American Medical Association.

Miller A, Grohe M, Khoshbin S, Katz JT. From the galleries to the clinic: applying art museum lessons to patient care. J Med Humanit 2013 Dec; 433-8. doi: 10.1007/s10912-013-9250-8.

Perry M, Maffulli N, Willson S, & Morrissey D. ( 2011) The effectiveness of arts-based interventions in medical education: a literature review. Medical Education 45 (2)141-148.


Free training workshop at the Royal Academy of Arts, London

Do you see what I see? Visual arts training for healthcare professionals  

3 November  2015 at the Royal Academy of Arts, Reynolds Room, Burlington House, London W1J OBD, 2-4pm.

Special guest: Linda Friedlaender, Yale Centre for British Art, Yale University. The session is open to students and clinicians from medicine, nursing, psychology, occupational and physical therapy, art therapy, and art gallery and museum staff. The session is free of charge but pre-registration is required. To register, please email your name, organisational affiliation and email address to  Please write ‘RA/YALEWORKSHOP’ in the subject heading and submit your request by 23 October.

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Solace at the end of life


Shelley Lamprell-Josephs is a Counselling Therapist and Director of Solace of Souls Care and Training in Hunstanton, Norfolk, UK. Here, she explains the background to her undergraduate thesis that is published in the September/October issue of the European Journal of Palliative Care.

Shelley Lamprell-Josephs

Shelley Lamprell-Josephs

I arrived somewhat nervous for my first day, in my first role as an auxiliary nurse, aged just 17. I was directed to a patient’s room having been told she had just died. I was asked to sit with her so that she was not alone. Initially, this was a scary prospect, however, as I sat there holding her hand, I knew it was the right thing to do.

Over 25 years later, my journey as a health and social care professional has included many years of working with palliative clients. This has always included a particular interest in emotional and spiritual needs, which I gradually recognised as an integral part of end of life care. However, several years ago, when I was asked to care for a family friend, my career began to change and further embrace a much more holistic approach. ‘Marian’ was diagnosed with terminal cancer and was extremely frightened, but more than anything, wanted to die in the home she loved.

I supported ‘Marian’ in the few months before she died, accompanying her in her outpatient chemo sessions, inpatient stays and at her home. We talked, laughed and cried and I supported her with anything, from hoovering the front room and sorting out her paperwork, to sitting quietly, holding her hand and offering Reiki sessions. I was there with her throughout the last 24 hours of her life, offering love, reassurance and support to her and her family. I helped to wash and dress her ready for the funeral directors and I supported her family through the funeral process and beyond.

The experience I shared with ‘Marian’ highlighted for me the need for a greater focus and understanding of good quality, individualised, holistic care at the end of life. I have since worked in this way with several other people and I was then asked to create courses for carers and professionals (such as counsellors, nurses, social workers and chaplains) to have all the tools they need to offer quality, holistic end of life care. These courses offer an in-depth exploratory learning environment, which looks at physical, emotional, social, environmental and spiritual aspects of care and support in palliative care.

Through my career, I have discovered that spirituality embraces all our personal beliefs and values that have formed throughout a lifetime, not just religious beliefs, but also individual non-partisan perspectives. These form the way we view the world we live in, as well as our wishes and choices. I was keen to develop further research into this area of palliative care and was therefore delighted to have this opportunity with my undergraduate dissertation. There were some interesting results discovered in the research study, including the issue of linguistic paucity, i.e., are our words/language limited in verbalising our experience of metaphysical phenomena? Also of interest were the repetitive patterns of thinking that highlighted a new processing theory – Primary Existential Design.

EJPC225coverRead the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘Do spiritual beliefs influence coping mechanisms in dealing with death and dying?’ by Shelley Lamprell-Josephs, published in the September/October 2015 issue of the European Journal of Palliative Care (vol. 22.5). 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.


Posted in EAPC-LINKED JOURNALS, EDUCATION & TRAINING, European Journal of Palliative Care, RESEARCH, SPIRITUAL CARE | Tagged | 1 Comment

20th Congress of the Japanese Society for Palliative Medicine: Making our dreams come true – the past 20 years and towards tomorrow

Tomoyo Sasahara, RN, PhD, Division of Health Innovation and Nursing, Faculty of Medicine, University of Tsukuba, Ibaraki, Japan, took part in what is possibly one of the biggest palliative care meetings in the world – the 20th Congress of the Japanese Society for Palliative Medicine held in Yokohama, Japan, in June 2015.

Dr Tomoyo Sasahara

Dr Tomoyo Sasahara

The Japanese Society for Palliative Medicine is the biggest palliative care-related society in Japan, with about 11,000 registered members across all disciplines. The main theme of this year’s memorable 20th congress was ‘Making our dreams come true – the past 20 years and towards tomorrow’. The congress offered a wide variety of sessions: 19 lectures with four guest speakers from overseas, 36 symposia, six forums, eight workshops and poster sessions. Despite very bad weather on one day there was an astonishing number of participants – approximately 7,800 people participated in the congress over two days. Even with ten sessions taking part simultaneously, every room was awash with participants!

With so many fascinating sessions to choose from, I picked ‘Palliative Care for Adolescents and Young Adults (AYAs) with Cancer’ because the number of these patients has been increasing in Japan due to the growing prevalence rate and improved treatment. A clinical oncologist, clinical psychologist, clinical nurse specialist in paediatrics and a medical social worker presented the many problems associated with AYAs with cancer, such as:

・survivorship: work, study, rehabilitation, appearance, sexuality, marriage, fertility, secondary cancer;

・palliative care for progressive cancer;

・communication between AYAs with cancer and healthcare providers;

・family care (AYAs’ parents, partners, children).

I was impressed to hear that healthcare professionals treated AYAs as adults and became less involved with them, although they were more actively involved when treating children. The development of a systematic care programme, a team approach and a social support programme were suggested as ways of supporting AYAs with cancer.

Guest speaker, Prof. Sheila Payne, with Dr Tomoyo Sasahara

Guest speaker, Prof. Sheila Payne, with Dr Tomoyo Sasahara

End-of-Life Care Nursing Education in Japan
Representing the ELNEC-J Working Group (End-of-Life Care Nursing Education Consortium Japan), I took part in the ‘Continuing Nursing Education for Palliative and End-of-Life Care’ symposium, giving a presentation on ‘ELNEC-J – past, present and future’. The ELNEC project is a national education initiative to improve palliative care that started in 2000 in the USA. Since 2007, I have been involved in developing a Japanese version of the ELNEC Core-Curriculum to improve the knowledge and skills of staff nurses in our country. The ELNEC-J project has been successful; there are currently about 1,300 trained ELNEC-J nurses who have taught about 12,300 staff nurses all over the country. While ELNEC-J consists of basic knowledge about end-of-life care, different levels of palliative care/end-of-life care nursing education projects have also been developed and were presented at the symposium.

A personal highlight for me was the chance to see Professor Sheila Payne again for the first time in about a decade – she was one of the guest speakers at the congress and had been my supervisor in a short-term study programme at the University of Sheffield in 2002. Seeing Professor Payne at this very fruitful congress re-inspired me once again!