The Digital Legacy Conference will return as a face to face event this year and will be delivered during the 18th European Association of Palliative Care World Congress (EAPC2023).

Digital Legacy Conference 2023 (DLC2023) attendees will learn about emerging best practices in areas relating to digital assets planning and digital legacy safeguarding. The event will cater for 148 people and is free to attend for all EAPC badgeholders. 

The conference will take place on Saturday 17th June in the Van Cappellen Zaal room. Doors will open at 8:30am, the conference will start at 9am and conclude at 12pm.

Why this conference is important

Modern day, communication technologies are changing the world. The way in which we live, the ways in which we plan for death and remember our loved one’s is increasingly moving into the digital realm. Health, social care and palliative care professionals need to adapt practice, policies and procedures to better support society with this ever-increasingly important area.

What to expect

The Digital Legacy Conference examines society’s attitudes and behaviours in relation to technology, end of life planning, death and bereavement. The conference’s goal is to empower palliative and end of life professionals to better understand this emerging space and adapt ways of working to embrace it.

Who is the Digital Legacy Conference for?

The Digital Legacy Conference is for those involved in care planning, social care, healthcare, palliative, hospice and bereavement professionals. It is also relevant for policy makers, technologists and academics working within this sector.

Nilay Erdem, Facebook Stakeholder and Engagement (EMEA) speaking at the Digital Legacy Conference 2019, EAPC 2019 in Berlin, Germany.

Call for abstracts / speakers

The call for abstracts has now opened. You can submit an abstract for consideration by clicking here. The closing date for abstracts is the 20th April.

Invited speakers

The following invited speakers will be sharing insights and experiences at this year’s Digital Legacy Conference. 

• Dr Ros Taylor MBE (Medical Director at Michael Sobell Hospice)
• Amarachukwu Callistus Nwosu (Senior Clinical Lecturer in Palliative Care at Lancaster Medical School & Research Lead (Marie Curie Hospice Liverpool)  
• Sarah Stanley (Research nurse at Marie Curie Hospice Liverpool)
• Professor Mark Taubert (Clinical Director at Velindre University NHS Trust in Wales & Founder of TalkCPR)
• James Norris (Founder of the Digital Legacy Association & MyWishes)

Who organises the Digital Legacy Conference

• The Digital Legacy Conference is organised by The Digital Legacy Association. The Digital Legacy Association is a global organisation dedicated to raising standards and developing best practices in areas relating to digital assets planning and digital legacy safeguarding. Previous Digital Legacy Conferences have taken place at UCL Partners (London), Siena College (New York), EAPC (Berlin), St Joseph’s Hospice (London) and online from Michael Sobell Hospice (London) for EAPC in 2021. 
• This year’s Digital Legacy Conference is being delivered during the 18th European Association of Palliative Care World Congress. Under the theme “Equity and Diversity in Palliative Care”, EAPC2023 will draw attention to the utmost need and goal of creating equity of fair access, opportunity, and advancement in palliative care for all people in need of this care.

Volunteer

If you are able to volunteer your time in Rotterdam please do get in touch

Reserve a ticket

You can register for an EAPC ticket by clicking here

Location (details and map)

This year’s EAPC and Digital Legacy Conference will take place at De Doelen in Rotterdam. The Digital Legacy Conference will take place on Saturday 17th June in the Van Cappellen Zaal room. Doors will open at 8:30am, the conference will start at 9am and conclude at 12pm (Location details).

Photo of the Van Cappellen Zaal 

To learn more visit www.DigitalLegacyConference.com 

Maneesh Juneja, Digital Health Futurist

Technology and those that create it are able to wield more power every day. The quest for greater efficiencies is promising us a brilliant future, where our needs, wants and even our emotional states are predicted, to enable personalised goods and services that arrive just in time. If algorithms could one day predict the onset of certain diseases, could they one day also predict when we are likely to die, and arrange the necessary interventions?

As more data about us is generated, captured and shared, in order to power artificial intelligence, can we really automate things like empathy and compassion, in the context of death? Today, children are growing up perceiving virtual assistants as friends and sometimes trusting a machine more than a human. Who (or what) will future generations turn to for support when it comes to bereavement? Humans, robots or a combination of both?

What does this shift mean for the services of tomorrow, and for those that work in areas such as Palliative Care? The pandemic has already catalysed changes across society, which have influenced not only how we behave, but how we relate to ourselves and each other.

The future looks uncertain in many respects, but there could be ways in which we can work together to not only navigate the uncertainty, but to ensure the future is a desirable one.

This keynote will take us on a journey towards 2040, to explore how emerging technology could create an even larger impact on dying, death and digital legacies, and what this means for our choices today as we work towards building a better tomorrow, for everyone.

Speaker Bio

Maneesh Juneja is a Digital Health Futurist who explores the convergence of emerging technologies to see how they can make the world a healthier and happier place. He looks at these technologies in the context of socio-cultural, political and economic trends, helping organisations around the world to think differently about the future.

Ticket information

The Digital Legacy Conference is free to attend for EAPC 2021 ticket holders. Alternatively, tickets can be purchased for £20 using the button below.

*The Digital Legacy Conference is a not for profit event run annually by the Digital Legacy Association. It is able to take place each year due to the kind support provided by sponsors, supporters and volunteers. If you or your organisation is interested in sponsoring this year’s conference click here.

Previous Digital Legacy conferences have taken place at UCL Partners (London), Sienna College (New York), EAPC (Berlin) and St Joseph’s Hospice (London). If you would like the Digital Legacy Conference 2022 to take place at your conference, congress, university, office or place of research please do get in touch

Marcos Sebastian, MyWishes Design Lead

Design is a hugely important way in which us humans understand an organisation. The design and branding can visualise both the service provided and values the organisation aligns itself to. When designing an end of life planning platform or service, it is difficult to highlight the multitude of different messages required. MyWishes objective was for the design to help install credibility, security, compassion and engagement in a non-morbid and accessible way. 

In this seminar, MyWishes’ design journey will be used as a case study. Starting from its original concept more than 10 years ago a chronological journey will outlines the design process and the different design iterations along the way. The seminar will conclude on the end of life planning suite, MyWishes has manifested into. 

Explorations around the design and user experience will take place and reasoning for colours and layout explained. 

Speaker bio

Marcos joined MyWishes three years ago, he has helped rework and reimagine MyWishes user interface and design principles. Marcos is a designer with over 20 years of experience. His work has been featured in various design publications and his former clients include political parties and startups. He utilises both a scientific and creative approach to design.

Ticket information

The Digital Legacy Conference is free to attend for EAPC 2021 ticket holders. Alternatively, tickets can be purchased for £20 using the button below.

*The Digital Legacy Conference is a not for profit event run annually by the Digital Legacy Association. It is able to take place each year due to the kind support provided by sponsors, supporters and volunteers. If you or your organisation is interested in sponsoring this year’s conference click here.

Previous Digital Legacy conferences have taken place at UCL Partners (London), Sienna College (New York), EAPC (Berlin) and St Joseph’s Hospice (London). If you would like the Digital Legacy Conference 2022 to take place at your conference, congress, university, office or place of research please do get in touch

Sandy Weatherburn, Social Embers

My Dad died on the 8th May 2020. He was 85 and lived a full and happy life. He died in hospital during the Coronavirus pandemic, meaning that visiting him in hospital was restricted. A small funeral was held for him at the local crematorium, with 9 mourners attending a brief 20 minute service, which was the maximum time that was permitted, meaning that no one except close family could be there. The service was live streamed so a few who were organised enough were able to attend virtually.

In many cultures and religions a shrine is created for a dead person. The Cambridge dictionary defines a shrine as either a place of worship or a place that is honoured because of its connection with a famous person or event. My Dad wasn’t famous, but he was well known in the town that he lived. 

I created a digital shrine, a tribute memorial website for him. I offered his friends and family a place to visit and honour him. This virtual space allowed for others to connect with one another in his memory. When I began the website, I had no idea how important it would become in processing my grief. I spent many hours looking at pictures of my Dad from throughout his life and not just the more recent ones of him being old and infirm. I saw him as a young man, a happy man and I was reminded of his full life and all that he had achieved. This process did not overwhelm me, it helped me accept his death. I imagine creating a similar digital shrine for someone who has died unexpectedly or at a younger age would have been more difficult, but the process was cathartic and gave me an insight into my Dad as a whole person. Looking at pictures of him that were taken before I was born, helped me see him as an individual, not just as my father. The digital space that I have created offers me a place to return, whenever I need to. It is a space that others can visit too, to remember, to mourn and to honour my Dad. 

Speaker Bio

My interest in technology and death began in 2012 when a close relative died suddenly. What was to become of her digital footprint took me on a journey of my own, and led me to attend the Digital Legacy Conference in 2016. I have since completed a MA course in Death Religion and Culture with Winchester University

Ticket information

The Digital Legacy Conference is free to attend for EAPC 2021 ticket holders. Alternatively, tickets can be purchased for £20 using the button below.

*The Digital Legacy Conference is a not for profit event run annually by the Digital Legacy Association. It is able to take place each year due to the kind support provided by sponsors, supporters and volunteers. If you or your organisation is interested in sponsoring this year’s conference click here.

Previous Digital Legacy conferences have taken place at UCL Partners (London), Sienna College (New York), EAPC (Berlin) and St Joseph’s Hospice (London). If you would like the Digital Legacy Conference 2022 to take place at your conference, congress, university, office or place of research please do get in touch

Professor Mark Taubert, Cardiff University 

Over the course of the pandemic, palliative care professionals have seen more individuals who have been more actively aware of their own demise and even awake during the deterioration from their infection. Very quickly, the palliative care community across Europe got together (via video meetings and social media) to exchange observations and write recommendations – locally we were advised by clinicians in Italy during early April 2020, who made recommendations about getting video-capable media devices in hospitals and hospices. We developed national guidelines in Wales which included managing all palliative patients in all areas, including ICU, the general ward and community.

At times, there have been excellent uses of digital media, wi-fi and video conferencing, and ward clerks, nurses and doctors were swift to adapt to the technology and help patients connect. One person even did a video meeting with his family at home, and they set up the screen so that it faced the dinner table for a meal ‘together’. Other circumstances, when a video-stream was live, but the patient was deteriorating on camera, in full view of their relatives at home, were far more challenging. We have missed ‘real’ visitors desperately in hospices and hospitals, as they are a core part of good care. The visitor chair in the hospital room has been empty, sometimes replaced with a camera phone or tablet computer, which has been helpful in some situations, and less so in others.

Speaker bio

Professor Mark Taubert is a palliative medicine hospital consultant and clinical director at Velindre University NHS Trust. His teaching and research activities at Cardiff University include advance care planning, acute palliative care, technology & new media and DNACPR decision making. He is the founder of TalkCPR.com and has a national lead role to improve public understanding on topics relevant to care in the last years of life and at the extreme ends of medicine. He has delivered a Ted Talk on subtleties in language that are relevant to modern healthcare delivery, and writes for international news outlets like the Washington Post, where his article was a top pick for 2019.

Ticket information

The Digital Legacy Conference is free to attend for EAPC 2021 ticket holders. Alternatively, tickets can be purchased for £20 using the button below.

*The Digital Legacy Conference is a not for profit event run annually by the Digital Legacy Association. It is able to take place each year due to the kind support provided by sponsors, supporters and volunteers. If you or your organisation is interested in sponsoring this year’s conference click here.

Previous Digital Legacy conferences have taken place at UCL Partners (London), Sienna College (New York), EAPC (Berlin) and St Joseph’s Hospice (London). If you would like the Digital Legacy Conference 2022 to take place at your conference, congress, university, office or place of research please do get in touch

Maggi Savin-Baden, University of Worcester, UK 

It is evident that relationships between technologies and the actual content of belief and practice have received little relatively attention and this presentation begins by exploring some of the recent debates in this area. Religions across the world have been one of the main ways of helping people to cope with and make sense of death. What is interesting about the discipline of death studies, as well as the more recent research into digital afterlife, is that they remain largely unconnected with the spiritual side of death and bereavement. This paper also presents the findings from a study that examined how digital media and digital afterlife creation affected understandings of death and the afterlife within religious contexts. It suggests that we are currently experiencing a shift from the digital to the postdigital and this is also resulting in the emergence of postdigital theologies.

This paper will present the findings of a small scale study that used narrative inquiry in order to understand the religious perspectives of experts on religion and afterlife. In practice interviews were undertaken with Ministers, Counsellors, Public Intellectuals, Technology Researchers, Academics, Business leaders. The findings of the study suggest that social media could be changing perspectives on the following areas: Death meanings and practices, Memorialisation, Perspectives on digital afterlife and Theology and persistence. The paper will finish by exploring the impact of the digital on the sacramental and argue for the importance of the emerging field of postdigital theologies.

Speaker Bio

Maggi Savin-Baden is Professor of Higher Education Research at the University of Worcester and has researched and evaluated staff and student experience of learning for over 20 years and gained funding in this area (Leverhulme Trust, JISC, Higher Education Academy, MoD). She has a strong publication record of over 50 research publications and 20 books which reflect her research interests on the impact of innovative learning, digital fluency, cyber-influence, pedagogical agents, qualitative research methods, and problem-based learning. In her spare time, she runs, bakes, climbs, and does triathlons, slowly. She is also lay Reader and on the Church of England Networked Learning Committee

Ticket information

The Digital Legacy Conference is free to attend for EAPC 2021 ticket holders. Alternatively, tickets can be purchased for £20 using the button below.

*The Digital Legacy Conference is a not for profit event run annually by the Digital Legacy Association. It is able to take place each year due to the kind support provided by sponsors, supporters and volunteers. If you or your organisation is interested in sponsoring this year’s conference click here.

Previous Digital Legacy conferences have taken place at UCL Partners (London), Sienna College (New York), EAPC (Berlin) and St Joseph’s Hospice (London). If you would like the Digital Legacy Conference 2022 to take place at your conference, congress, university, office or place of research please do get in touch

Death and mourning remain invisible issues within the French school system, whereas multiple studies and field experience reveal the prevalence of situations where teachers and school doctors are expected to take care of complex situations. These actors tend to feel vulnerable and lack concrete tools to open free discussion with students. The needs are important given how recent terrorist attacks in France and the current pandemic have profoundly affected students’ mental health. Offering spaces to openly discuss these deeply emotional issues appears essential to prevent psychosocial and pathological risks while promoting a pedagogy of finitude.

In a context where medical and psychological knowledge is increasingly being disseminated through the Internet and social media, the French Society for Palliative Care has recently launched an online platform to help the teaching and medical staff and parents to talk more openly with children and teenagers about issues such as the end-of-life, death and mourning. This website offers resources, examples of good practices as well as a list of actors which may support children or teenagers who have a life-limiting illness or who have a bereaved experience, a particular focus is made on young orphans and young carers, two populations emerging as subjects of study.

This presentation aims at introducing this project entitled “La vie, la mort… On en parle ?” (“Life, death… Shouldn’t we talk about it?”), which has required the collaboration of multiple stakeholders from the medical and the education worlds (parent-teacher associations, pediatric palliative care teams, school health associations, end-of-life care volunteers’ organizations, French Ministry for Education, etc.). The following points will in particular be addressed:

• The choice of a website as a medium: our initial bypassing strategy became a deliberate choice which was legitimized by the current COVID-19 crisis ;

• The operational, ethical and epistemological issues which the promotion of a pedagogy of finitude online implies in an institutional context ;

• The successful and participative mobilization offered by such an online platform to enhance the visibility of youngsters confronted with incurable illness, end-of-life and mourning.

Speaker Bio

Nicolas El Haïk-Wagner is the coordinator of a working group of French Society for Palliative Care dedicated to the diffusion of “palliative care culture” to young generations. He works as an independent researcher for several organizations; his research interests include the social and ethical issues arising from emerging medical technologies as well as from society ageing. Nicolas El Haïk-Wagner holds a Bachelor of Arts, Honours in Anthropology from the University of British Columbia (Vancouver, Canada), and a Master of Arts in social policy from Sciences Po Paris.

Caroline Tête is a documentalist at the French Centre of palliative and end-of-life care. She created a site, VigiPallia, dedicated to documentation (academic literature and pop culture references) on palliative care, end-of-life and bereavement. She works on health promotion of youth, first, on alcohol research projects and then, on projects focused on end-of-life and bereavement. She created a reading committee for highlighting a selection of child books on these topics, available online for parents and healthcare professionals who want to discuss these issues with children and teenagers.

The Digital Legacy Conference is free for EAPC 2021 ticket holders. Alternatively, tickets can be purchased for £20 using the button below.

*The Digital Legacy Conference is a not for profit event. To learn how you or your organisation can sponsor and support this year’s conference click here.