The Digital Legacy Conference 2021 will examine how COVID-19 has changed and accelerated society’s attitudes and behaviours in relation to end of life planning, death and bereavement. It will review the impact of COVID-19 on Palliative Care (#PalliCovid) whilst ‘exploring new dimensions’ in the online and digital space.

Changes in processes, frameworks and laws are taking place. In the UK for example, people are currently allowed to have their last will and testament virtually witnessed. Technology platforms are evolving and society is aware of the positive, psychological impact attending virtual funerals can have. We have seen an increase in the variety of ways in which people are remembered through virtual memorials and different ways in which communication technologies like Skype, Zoom and WhatsApp can enable remote death bed goodbyes.

It is important that both professionals and the general public understand this emerging area. Once understood communication and end of life planning can be improved.

Who is the Digital Legacy Conference for?

Everyone is welcome to attend however the information shared is especially relevant to social care, healthcare, palliative, hospice, bereavement, legal, policy makers, academics, charity and funeral professionals.

Information exchange

As we all look ahead to the winter months, it is important that we share information and best practice amongst us. It is important that we celebrate excellent levels of care and support provided in different contexts and in different sectors. Through sharing and reflecting both speakers and attendees will be able to apply what they learn to their own practice and improve levels of communication and care with the communities they serve.

Full Programme

4:00pm: Welcome to the new world, a new world in which we all inhabit – Dr Ros Taylor MBE, Palliative Physician. Former Clinical Director at Hospice UK, Medical Director at Michael Sobell Hospice and Harlington Hospice. Trustee at Nightingale Hammerson Care Home & James Norris, Digital Legacy Association, MyWishes & Michael Sobell Hospice (UK)

4:20pm: Why Nothing We Do Online Will Exist After We Die and That’s Ok. – Dr John Troyer, Bath University 

4:40pm: Life, death… Shouldn’t we talk about it with students? Issues arising from the creation of an online platform for the French medical and school staff – Nicolas El Haïk-Wagner & Caroline Tête, French Society for Palliative Care

5:00pm: Netiquette for Dealing with Illness, Death, and Grief: Has COVID-19 impacted the rules? – Dr Carla Sofka, Siena College 

5:20pm: The posthumous privacy paradox: Privacy preferences and behavior regarding digital remains – Tal Morse, Hadassah Academic College & Michael Birnhack Tel Aviv University

5:40pm: “They were part of the family” – a look at grieving for a pet online. – Stephanie Owens, Cochrane and Dying Matters

6:00pm: Digital Executor®: Unraveling the New Path for Estate Planning – Sharon Hartung, Captain (Ret’d), PEng, TEP, is the founder of Your Digital Undertaker

6:20pm: Digital afterlife and the spiritual realm – Maggi Savin-Baden, University of Worcester, UK 

6:40pm: Why creating a digital shrine for my Dad helped me with my grief. – Sandy Weatherburn, Social Embers

7:00pm: Designing for death, evolving DeadSocial into MyWishes – Marcos Sebastian, MyWishes Design Lead

7:20pm: Living beyond death; who cares? – Dr Erica Witkamp Professor Care for Family Caregiving, Faculty of Nursing and Research Center Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, The Netherlands. Rob Bruntink, Journalist, Owner of Bureau MORBidee, The Netherlands & Judith Rietjens, Associate professor, Dept. of Public Health, Erasmus University Medical Center, The Netherlands 

7:40pm: Designing for Choice at the End of Life: does COVID-19 Shift our Collective Experience of Death Online? – Dr Stacey Pitsillides, Northumbria University

8:00pm: Cryptocurrencies, Cryptoassets, and Inheritance Planning – Pamela Morgan, Empowered Law

8:20pm: Palliative Pandemic and its Digital Divides – Professor Mark Taubert, Cardiff University 

8:40pm: Digital Legacy and the idea of life as a work of art – Steve Fuller, University of Warwick

9:00pm: 2040: Death, bereavement and digital legacies – Maneesh Juneja, Digital Health Futurist (Keynote)

9:40pm: Closing remarks –  Dr Ros Taylor MBE, Palliative Physician. Former Clinical Director at Hospice UK, Medical Director at Michael Sobell Hospice and Harlington Hospice. Trustee at Nightingale Hammerson Care Home & James Norris, Digital Legacy Association, MyWishes & Michael Sobell Hospice (UK)

10:00pm: Close

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

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 dying affects us all but despite its deep significance questions of what to do with our bodies, legacies and memories are often overlooked. Our legacies are now blended sites of on- and offline identities that come with questions of privacy, ownership and control, continuously being redefined both socially and legally.

Creative responses to digital and material rituals can be used to explore how the things that designers and people make have the agency to construct new social relations. These shifts challenge what the dead mean to us and how aesthetics, bodies and environments merge to create new associations and experiences of death. They create a space for design intervention, not simply in the creation of new products but in the conception of what it means to make space for our current and future relationship to mortality. The emergence and spread of COVID-19 has increased the prevalence of death, dying and disease in the media and our own lives, creating a unique contemporary understanding of the fragility of our medical, economic and political systems, alongside a deep global need for exploring how we can be physically distant but remain socially connected. It has also laid bare local and global inequalities.

The paper will reflect on how Covid-19 has shaped new perspectives on digital funerals, legacies and memorials and share some of the ways that design communication has been used within the Love After Death research project. This research project is a collaboration with a consortium of Death Positive Libraries and aims to co-create tools that inspire more transparency around choices for the end of life. The use of physical installations and an online COVID-19 programme challenges the overused and unnecessary arguments about the taboo of talking about death by demonstrating how discussions about human mortality are an everyday opportunity that promote citizen choice within their own legacies.

Speaker bio

Dr Stacey Pitsillides is a VC Senior Research Fellow in the School of Design at Northumbria University. Her research explores death and technology through participatory design by collaborating with hospices, festivals, libraries, and scientists. Through a series of publications and practice, including the Death Positive Library: Love After Death, this research has been commissioned for NESTA’s FutureFest, London Design Week, and DesignTO festival, Toronto. Since 2010 she has also brought together academics, industry leaders, activists and technologists as a founding members of the international Digital Death Day events and more recently as part of the Death Online Research Network committee.

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 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 or research in 2022 please do get in touch