Interested in paediatric palliative care? A date for your diaries…

The European Association for Palliative Care (EAPC) is teaming up with the Norwegian Association for Children’s Palliative Care (FFB) to present a three-day congress on paediatric palliative care. Julie Ling, Chief Executive, EAPC, and Natasha Pedersen, Founder and Chief Executive, FFB explain.

Left to right: Natasha Pedersen (Chief Executive and Founder, Norwegian Association for Children’s Palliative Care) and Julie Ling, Chief Executive, European Association for Palliative Care. .

For the first time, the EAPC will be co-hosting a congress on paediatric palliative care with one of our national member associations, the Norwegian Association for Children’s Palliative Care (FFB), Norway. The European Congress on Paediatric Palliative Care #PPC2020 will take place in Kristiansand, Norway, 2 to 4 September 2020.

The scientific committee have developed an exceptional programme covering a range of contemporary issues in paediatric palliative care, including:

  • neonatal palliative care,
  • pain and symptom management,
  • ethical issues,
  • education, and;
  • research.

Artwork: © 2019 European Congress on Paediatric Palliative Care (Ms Hagesaether).

We are delighted that so many high-profile speakers from paediatric palliative care globally have agreed to be a part of this exciting congress. Speakers from the USA, (Dr Joanne Wolfe), New Zealand (Dr Ross Drake), Canada (Professor Sue Fowler- Kerry) and, closer to home, Professor Eduard Verhagen, Professor Julia Downing, Professor Richard Hain, Dr Lorna Fraser and Dr Finella Craig, will ensure that this congress is a valuable learning experience for delegates. (See the full line-up of speakers here.

The EAPC aims to provide a forum for all of those either working, or with an interest in palliative care throughout Europe and beyond. Members are engaged in palliative care across the lifespan, importantly, including children. We have a very active EAPC children’s palliative care task force and held a most successful seminar at the Berlin World Congress where 900 delegates registered to attend. Plans are at an advanced stage for a Paediatric Palliative Care Day at the EAPC World Research Congress in Palermo in May 2020; there is still plenty of time to submit an abstract.

Now, for the first time, we are delighted to be collaborating in a joint paediatric congress with one of our member organisations, the Norwegian Association for Children’s Palliative Care. We are confident that our pooled resources and access to such a prestigious cast of international speakers will do much to take forward the work of paediatric palliative care.

Registration and abstract submission are now open for our joint seminar with FFB in Norway, 2 to 4 September 2020. We really hope that we will see you there.


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Palliative Care: Surrounding You With Support

This week, the island of Ireland is celebrating Palliative Care Week #pallcareweek…

Karen Charnley, Director, All Ireland Institute of Hospice and Palliative Care (AIIHPC), explains how good information and support are the cornerstone of this year’s campaign and introduces the ‘Palliative Hub’ and other useful resources for professionals and the public.

Left to right: Karen Charnley, (Director AIIHPC) with Heather Weir, (Vice-Chair) and Fintan Fagan (Chair).

The sixth annual Palliative Care Week coordinated by All Ireland Institute of Hospice and Palliative Care (AIIHPC) runs from 8 to 14 September 2019.The theme for this year’s campaign is Palliative Care: Surrounding You With Support. It aims to raise awareness of the difference palliative care can make to people with a life-limiting illness or condition, to carers and to families throughout the island of Ireland.

The focus for 2019 is on how people with palliative care needs are being supported by the whole community; including from primary care, from hospice, hospital, nursing home, and wider community support beyond formal health and social care services.  We have collaborated with our partners to produce a series of videos featuring the stories of people living with palliative care needs and these are available during the week.

As we create conversations around palliative care, particularly involving people with direct experience, we hope more people will feel empowered to think about how palliative care could help them. Communities all over the island of Ireland are being encouraged to get involved with a call to action on The Palliative Hub.

The Palliative Hub is a treasure trove of good information and support for everyone with an interest in palliative care on the island of Ireland and beyond. It was created to fill a recognised gap in the palliative care sector for a dedicated website to help people from a variety of backgrounds access and find the information and resources they need.

  • The concept behind both the Children and Young People Palliative Hub and the Adult Palliative Hub is to provide a gateway to information about palliative care on the island of Ireland. The content on the websites has been provided by professionals working in palliative care. Throughout these sites are videos, photos, stories and quotes from those who have availed of palliative care services in Northern Ireland or the Republic of Ireland.
  • Caring for Carers is a dedicated resource area providing core information for family members or friends who are providing support to a person who needs palliative care. There are eight main sections with links to useful websites and fact sheets.
  • The Professional Palliative Hub provides online resources for health and social care professionals, researchers and educators. It offers a central repository for these audiences to access key reports, toolkits, guidance documents, links, videos, presentations and other resources. It also provides a dedicated area for researchers to share knowledge, collaborate and produce evidence-based research to change practice through education and inform policy.
  • The Learning Platform provides an online learning environment for both the public and professionals. It also offers an environment for AIIHPC partners to host their own learning materials.

VIEW – Insight into Palliative Care

In a new and exciting development to Palliative Care Week this year, AIIHPC has sponsored the 53rd edition of VIEW independent social affairs magazine. This edition, which focuses exclusively on palliative care, includes articles from well-known ambassadors of palliative care, Dr BJ Miller from the United States and Dr Kathryn Mannix from Britain. Read VIEW here.

How you can get involved in this year’s campaign

AIIHPC coordinates Palliative Care Week with and on behalf of our partner organisations. A range of promotional materials have been produced for the week. They can be viewed here.


One way to get involved is to download our social media frame (here) and share a picture stating what palliative care means to you. And support the campaign by using the hashtag #pallcareweek









Utilising gaming to enhance palliative care for children – the MyPal Child study

Professor Julia Downing, MyPal team member and Chief Executive, International Children’s Palliative Care Network, explains how the MyPal Child study aims to incorporate ‘gaming’ – now a part of everyday life for many children and young people – within the healthcare system in order to help them engage more actively with their illness.

John is 12 years old and has been diagnosed with acute lymphoblastic leukaemia. He has been admitted to hospital for treatment and is missing his friends and feeling quite isolated. He feels very tired and unwell and whilst having treatment he tries to distract himself by playing games on his tablet. He and his friends often play computer games together and he finds that playing games makes him feel that he is doing something ‘normal’ and it helps distract him from his treatment.

Professor Julia Downing

Over the years, gaming has grown in popularity and has become a regular pastime for many people, including children. In July 2019, we heard how a 16-year-old had won the Fortnite ‘World Cup’. Gaming is now part of everyday life for many children and young people whether these may be educational games, sports, or more complex games. In 2011 over 91 per cent of children in the USA between the ages of two to 17 years old were playing video games, and a more recent survey found that children were playing on average 15 hours of games a week (2.13 hours a day).

Thus, if we are going to communicate with today’s generation, we need to be looking at how we can incorporate ‘gaming’ within the healthcare system. How we can develop what is called a ‘serious game’, one designed for a purpose other than pure entertainment that will help us improve the provision of palliative care to children and young people. I am familiar with the use of technology in palliative care, and have been involved in studies looking at mobile phone and tablet technology; however, nothing quite so elaborate as a game!

I am not of the ‘gaming generation’ and it has been a steep learning curve for me being involved in the MyPal project (1) Fortunately, we have a great team of technical experts who have been able to explain how the game will work, what it will achieve, and how we can collect data. Our game will incorporate electronic Patient Reported Outcome Measures (ePROs), through which the children and young people will be able to regularly report changes in their symptoms and condition. Hopefully the game makes answering the ePROs entertaining and enjoyable. Through the game, as a ‘diver’, players will be taken to a ‘beautiful, alien underwater world, visiting corals, caves, tunnels and ancient civilisations, and finding beautiful things for their collections’. Game developers Stefan Hoffmann and Robert Schraut of Promotion Software GMBH (one of the MyPal partners) explain more about how it will work in the MyPal newsletter that is being launched this week.

This image is not from the game itself, but is one of the many images inspiring the game’s designers.

Whilst the game is still being developed and the ePRO system incorporated within it, we are excited about the potential within palliative care. Robert Schraut and Stefan Hoffman note that  to gamify a questionnaire to get better and more detailed results is something that we expect to work well. If proven successful, we could think of variations for all kinds of paediatric problems. Still, the design of the app isn’t generic: it’s tailored for the palliative needs of MyPal’s children participants.”

Likewise, Prof Dr Norbert Graaf, from Saarland University in Germany, one of the clinical sites for the projects says We hope the MyPal system will have such an impact in the field of palliative care that it will be widely taken up by those involved with palliative medicine.

For more information about the MyPal study visit the website and read our latest newsletter here.


  1. MyPal (Fostering Palliative Care of Adults and Children with Cancer through Advanced Patient Reported Outcome Systems) is funded by the European Commission and started on 1 January 2019. The project aims to improve communication between cancer patients and their medical team by using specially developed apps for reporting symptoms.


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Standing on the shoulders of giants – a brief, patient- and proxy-reported outcome measure in advanced illness


Fliss Murtagh is Professor of Palliative Care and Associate Director of the Wolfson Palliative Care Research Centre, and Academic Training Programme Director – North & East Yorkshire and Northern Lincolnshire, UK. Here, she explains the background to a longer paper published in the September issue of ‘Palliative Medicine’, which she describes as a work that ‘stands on the shoulders’ of many people.

Professor Fliss Murtagh

We are delighted to hear that our recent paper ‘A Brief, Patient- and Proxy-Reported Outcome Measure in Advanced Illness: Validity, Reliability and Responsiveness of the Integrated Palliative Care Outcome Scale (IPOS)’ has been selected as ‘Editor’s choice’ for the September 2019 issue of Palliative Medicine.

This paper tests (validates) a brief measure (called IPOS) that assesses the main symptoms and concerns of people with advanced illness. At first sight, a paper on ‘testing a measure’ may not sound very exciting. After all, what does this have to do with improving care? Yet this work has everything to do with improving care!

First, how do we know our care is good? Answer: we have to demonstrate this by showing a positive impact on the outcomes important to those with advanced illness, and by ensuring a good experience of care. IPOS is an outcome measure and not an experience measure – so it addresses the first of these (experience measures are needed too).

Second, how can we best manage and improve our services? Answer: we cannot manage what we do not measure – and most measures of the quality of services have relied on measuring the processes, rather than the results (or outcomes) of care. So we have measured things like number of beds or staff, bed occupancy, length of stay, people seen by a service – all metrics that show what we do, but not how well (or poorly) we do it!

So this paper is critically important. It tests IPOS – both the patient self-report version and the staff proxy-report version (when people are too ill to self-report). In brief, we asked:

  • Does IPOS measure what we intended? Yes, it does; there are three underlying constructs, of physical symptoms, emotional symptoms and communication/practical issues.
  • Does IPOS behave as expected? Yes, it scores much the same if it is re-scored later and symptoms/concerns are unchanged.
  • Do patient and staff versions correspond? Yes, for most items, the patient and staff versions correlate well.
  • And most important, do changes in the IPOS score reflect meaningful changes for the patients? Yes; if the IPOS score goes down then patients report that things are better, and when it goes up they report that things are worse.

IPOS is already being widely used, in the UK and internationally. It is different from symptom scores, because it extends beyond symptoms to include other concerns important for patients (information and communication, family concerns, practical matters, and existential or spiritual concerns).

IPOS is freely available and can be downloaded from  It is also increasingly available in different languages – all available from the website.

In 1676, Isaac Newton wrote “If I have seen a little further, it is by standing on the shoulders of giants.” This work ‘stands on the shoulders’ of many people:

  • Patients and families who provided interviews and feedback about what mattered most to them, in early qualitative studies, in feedback on use of POS, and through our Patient and Public Involvement groups – IPOS is completely underpinned by what they had to say.
  • Irene Higginson, who has pioneered and led work on the Palliative Care Outcome Scale (POS) for many years, long before outcome measures came to the forefront of health care.
  • Christina Ramsenthaler, whose insights into the complexities of psychometrics were invaluable and essential for the paper.
  • Not least, the 376 patients and 161 staff who worked hard to complete IPOS and other measures for this study, often when unwell or busy delivering care.

A huge thank you to all the co-authors, whose patience has been outstanding and without whom this paper would not have been written.


This post relates to the longer article,A Brief, Patient- and Proxy-Reported Outcome Measure in Advanced Illness: Validity, Reliability and Responsiveness of the Integrated Palliative Care Outcome Scale (IPOS) by Murtagh FE, Ramsenthaler C, Firth A, Groeneveld E, Lovell N, Simon ST, Denzel J, Guo P, Bernhardt F, Schildmann E, van Oorschot B, Hodiamont F, Streitwieser S, Higginson IJ, Bausewein C., published in Palliative Medicine 2019 Volume: 33 issue: 8 page(s): 1045-1057. Article first published online:12 June 2019 (doi: 10.1177/0269216319854264). Issue published: 1 September 2019.


EAPC members can download this, and all other ‘Editor’s choice’ articles free of charge

If you are currently an Individual or Associate EAPC Member you have full access to the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles and many other papers too. Just click here, enter your email address and membership password and choose from the list of journal articles.

How to join as an Individual/Associate Member, or to renew your membership

Note: You can apply to be an Associate Member FREE of charge provided that you are a member of your country’s national palliative care association, and that the association is an EAPC National Association member.

Posted in EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, RESEARCH | Tagged , | Leave a comment

Discovering people’s strengths and resources at the end of life

On the 90th birthday of pioneering palliative care social worker, Elisabeth Earnshaw-Smith, we are delighted to republish this earlier post, which we hope will stimulate the thinking around the family and social model in palliative care. And you can download a free copy of the full-text article to which it relates from the archives of the European Journal of Palliative Care…

David Oliviere, Social Worker, Counsellor and Educationalist, describes the influence of Elisabeth Earnshaw-Smith on social work in palliative care – a backgrounder to David’s longer article in the January/February 2018 issue of the European Journal of Palliative Care.

David Oliviere

Who was it who held out their hand to show you the way into palliative care? Who held your hand maybe to teach you the skills to weather hard moments? Who had trodden the path before you?

Most of us know someone who acted as a mentor, as we learned the craft of palliative care, who inspired us, who went the extra mile in believing in us and gave us the confidence that we could do it!

For me, when I was appointed to set up the social work service at the North London Hospice in 1985, it was Elisabeth Earnshaw-Smith, first Director of Social Work at St Christopher’s Hospice, London.

“Palliative care is all about discovering people’s strengths and resources” Elisabeth told me when I entered the field. She was appointed by Cicely Saunders in 1979 and set about creating a family approach to psycho-social palliative care that has now spread worldwide. Her pioneering work is at the core of what it is to be a palliative care social worker and was further developed by the multi-professional team at St Christopher’s. The team that made ‘the family as the unit of care’ a reality through strategies from family therapy practice, such as family trees/genograms, family meetings and emphasising the part family dynamics play in the crisis of illness, death and bereavement.

Naming ‘the elephant in the room’

Elisabeth influenced not only the multi-professional team at St Christopher’s but also other palliative care workers through her teaching and publication. Several doctors and nurses have told me how she inspired and influenced them. Dr Tony O’Brien, Consultant Physician in Palliative Medicine, Cork, Ireland, talked about Elisabeth as the first social worker he had met and about her skill in clinical meetings in naming the unspoken, such as unacknowledged feelings in families and staff (O’Brien, 2013).

Elisabeth Earnshaw-Smith: her pioneering work is at the core of what it is to be a palliative care social worker.
Photo with kind permission of Elisabeth Earnshaw-Smith and the Association of Palliative Care Social Workers.

Elisabeth, the person, the professional

As the number of palliative care social workers grew in the UK through the 1980s, Elisabeth saw many colleagues into the work and ‘strengths and resources’ became a sort of mantra. She initiated the Association of Palliative Care Social Workers; she empowered many of us to speak and write about our emerging work. She consistently affirmed our input.

Elegant, her characteristic white hair in a bun, speaking the Queen’s English precisely and displaying impeccable social skills, those of us young social workers giggled that we were in the presence of royalty! After her retirement, I continued to meet her in the Charing Cross Hotel, London and, over cucumber sandwiches (where we and others had created the constitution for the professional Association), listened to her wisdom and advice about the world.

In the past few years, Jo Hockley, ex-colleague nurse and I have been visiting Elisabeth in her nursing home where, at 88, she receives excellent compassionate care and family support, the sort she advocated …

Palliative care social work

Social work is a crucial window on the world of palliative care. Social work’s view of the patient, in their social context, brings a vital, often refreshing and unheard perspective to the assessments and interventions offered by the multi-disciplinary team. The social worker is so often at the interface between the clinical team and the social world of the patient, their relationships, networks and resources (Earnshaw-Smith in Clark et al, 2005; Oliviere, 2001).


Clark D, Small N, Wright M, Winslow M, Hughes N (2005) A bit of heaven for the few. An oral history of the modern hospice movement in the United Kingdom. Lancaster: Observatory Publications, pp 163-166.

O’Brien T (2013) Social Work: looking inwards; looking outwards. Paper EAPC Congress Prague.

Oliviere D (2001) The Social Worker in Palliative Care – the ‘eccentric’ role. Progress in Palliative Care Vol 9 (6): 237-241.

Links and Resources

Read the full article in the European Journal of Palliative Care (free access to all)

This post relates to ‘Social Work in Palliative Care: the influence of Elisabeth Earnshaw-Smith. Discovering people’s strengths and resources at the end of life’ by David Oliviere published in the January/February 2018 edition of the European Journal of Palliative Care (EJPC) (vol. 25 (1). The entire archive of the EJPC – from 1994 to 2018 – is now available to access free of charge. Register here and then choose the year, issue and article. 

Read more posts relating to articles published in the European Journal of Palliative Care on the EAPC Blog.

Posted in Bereavement, EAPC-LINKED JOURNALS, European Journal of Palliative Care, INTERVIEWS & TRIBUTES, PATIENT & FAMILY CARE, PSYCHO-SOCIAL ISSUES, Social work | Tagged | 1 Comment

New Death Café in a Hertfordshire village – what did we talk about?

Death Cafés are part of a growing worldwide movement to encourage people to talk about death. Last week, palliative care physician, Dr Mark Taubert, explained how he and colleagues started a Death Café in Wales. Today, Imogen White, a retired social housing consultant from Hertfordshire in the United Kingdom, describes her first visit to a Death Café in her local village.

Imogen White

I was astonished and delighted when a new Death Café was announced in our Parish Magazine earlier this year. A phone call to the vicar who was setting it up reassured me that it was going to be non-religious – essential for me, a humanist agnostic with no belief in an after-life. The two other people involved in running the Death Café are a recently retired palliative care nurse and a widow who supported her husband as he died.

The Death Café takes place in the popular high street café, with a space kindly given free of charge though we donate contributions for refreshments. Since March, Death Cafés have taken place over four evening and three afternoon sessions. Attendance, including the three organisers, has ranged from four to 11 people per session. Some have attended only once and some have attended for only a short part of the full hour and a half of each session. These last two factors have contributed to some disjointed sessions. But maybe this is my problem (I come from an academic and management background) – Death Cafés are supposed to enable conversations, ie they are not intended to be formal seminars!

The Village Café, Stanstead Abbots – the venue for Death Café meetings.

Everyone attending had a curiosity about the concept of a Death Café along with a desire to discuss aspects of death and dying discouraged in ordinary conversations. Friends and family of many of those choosing to attend the Death Café had expressed horror, incredulity or even ridicule about the idea of a Death Café.

Attendees have had a range of experiences of death. For example, one person had no experience at all and wanted to know the differences between dying in hospital and in a hospice.

Although the initial announcement in the Parish Magazine stated that the Death Café would not be a bereavement group, the facilitators have needed their skills to support the grief, loneliness and depression sometimes expressed. Some of those attending and facilitating had negative views about the benefits of counselling, preferring to share their grief in the Death Café. Confidentiality has not been made explicit at the meetings.

Some participants attending one session discussed the need for better listening in British culture, suggesting that Death Cafés could help contribute to a more compassionate society, helping to address isolation, loneliness and unfriendliness.

Strong views about the euphemistic terminology that is often used about death has been another common theme. We reached consensus very quickly about our preference for ‘died’ rather than ‘lost’ or ‘passed away’. Conversation on this led onto to the issue of having young children at funerals, or not. This controversy was followed by a brief discussion on cultural differences to grieving and funerals.

Death Café advertisement.

Future topics to cover, listed in the current Parish Magazine, include: funerals (led by a local funeral director), wills and Lasting Powers of Attorney (LPA) (led by a solicitor). (An LPA is a legal document in England and Wales that enables attorneys to be appointed to look after a person’s financial affairs and/or to make decisions on their behalf relating to health and welfare issues).

And I guess that we will get round to talking about the existence – or not – of an after-life!




Some websites recommended by participants in the Death Café that Imogen attended:

Contact Imogen White by email.

Read Mark Taubert’s post on the EAPC blog.



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A Death Café in the Welsh Valleys

Death Cafés are part of a growing worldwide movement to encourage people to talk about death. Mark Taubert, Clinical Director Palliative Medicine and Honorary Senior Lecturer at Cardiff University School of Medicine, Cardiff, Wales, UK, joined forces with colleagues to set up a Death Café in the Welsh Valleys.

Dr Mark Taubert.

‘Welcome to Death Café’, said the website when I clicked on the link. I’d heard about Death Cafés online and in the news but had never been to one. When a colleague, Maria Parry, a lecturer at the University of South Wales, suggested that we host one, I was unsure where to start. Luckily, Maria and her colleague Claire were full of ideas, and the Death Café website holds ample information on how such events are run. In fact, one of the ground rules is: relax, not too many rules, not too much structure, just let the conversation flow.

Death Cafés – how they started

Death Café is a ‘social franchise’. In 2010, Jon Underwood decided to develop a series of projects about death, one of which was to focus on talking more about it. The first event in the UK was held in Jon’s house in east London in September 2011. It was facilitated by psychotherapist Sue Barsky Reid, Jon’s mother. They went on to offer Death Cafés in various places: cafés, people’s homes, cemeteries, yurts and even London’s Royal Festival Hall.

Death Cafés spread quickly across Europe, North America and Australasia. As of today, more than 9,000 Death Cafés have been held in 65 countries since September 2011. What happens there? People (often complete strangers) talk openly about death, dying and grief.

Starting our own Death Café in the Welsh Valleys

We got a team of volunteers together very quickly. Coffee and death seem to be good conversation starters, so combining them makes sense. Velindre Cancer Centre and the Marie Curie charity were both keen to be involved. Deciding location was tricky but the idea of a Death Café was so intriguing to the University of South Wales, that they offered us one of their campus cafés in the South Wales valleys. For free!

We quickly devised a coffee and cake rota, and who would buy or bake what. Another challenge was creating a poster with a good logo! We got there in the end, with the help of a skilled family member who fashioned a skull into a frothy coffee. That poster and image was then shared on social media and in the local area, including libraries, GP surgeries and community halls. Claire Churcher, another lecturer, made an absolute cracker of a cake. And a local journalist wrote an insightful article about death and invited readers to join the forthcoming event.

Specially baked cakes helped the conversation to flow.

When the day came, local rugby legend and television presenter, Phil Steele, was keen to join us. We had press coverage from national newspapers,  and also BBC Radio Wales. The room was full with people aged from 20 to 80 plus. We had a brief introductory session and the conversation flowed. A Facebook Live session was set up by Marie Curie charity (with thanks to Rachel Moses-Lloyd) and there was lots of Twitter activity too because the event coincided with Dying Matters awareness week.

What mattered most?

Welsh rugby presenter, Phil Steele, singing ‘Nancy’, a song about his late wife. (Phil Steele has written a book called Nerves of Steele about his grief).

But it was the personal stuff – the real, spoken interaction – that mattered most. We all exchanged stories from our lives that we found important. One lady talked about the deaths of her husband and her mother, both had been vastly different experiences. Phil Steele (pictured above) brought out his guitar and sang a song about grief. People cried, people laughed, and there was a real shared moment, it felt special. In the break, we drank coffee and ate cakes.

And then the conversation started flowing again. Just like that, with no starting whistle sounding off. I had thought it would require a lot of facilitation to get the conversation going, but far from it. We found that everyone launched into the conversation freely, and at the end of three hours, people were still chatting.

We got very good feedback about the event later, so much so that we are now planning the next event. If you are interested, take a look at the Death Café website to see if there is a planned event near you. And if not, just set one up.


  • Death Café website includes a how-to guide on setting up your own Death Café. (Tip: Follow link to Hold a death café)

Next week on the EAPC blog, Imogen White describes her first visit to a new Death Café in her local village in England. 


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