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

Dr Carla Sofka, Siena College (New York)

According to the Oxford English Dictionary, etiquette is “the customary code of polite behavior in society”. Due to the increased use of digital technology and social media as a tool for coping with life-threatening illness, impending death, grief, and tragedy (thanatechnology), this code has been adapted to provide guidance for online behavior during these life events. Familiarity among helping professionals with this “netiquette” will help to facilitate positive experiences for the dying and bereaved who choose to use thanatechnology.

Based on information gained through original research, reviews of the literature (scholarly as well as the popular press), and personal experience, the presenter will share a compilation of “netiquette” to guide online behavior during times of impending death, grief, and tragedy, paying particular attention to how these guidelines have been impacted by the COVID-19 pandemic. Discussion will focus on the sharing of “bad news” (including death notification), grieving online, providing support to the bereaved, the taking and sharing of images (including funeral selfies), and livestreaming a funeral or memorial service. Implications for clinical practice regarding the assessment of thanatechnology use among the dying and bereaved will be discussed. Strategies to incorporate “netiquette” into public death education for the lay public and for professionals will be shared. Implications for future research will be identified.

Speaker Bio

Dr. Carla Sofka is a professor of social work at Siena College in Loudonville, NY who previously worked in geriatric, medical, psychiatric, and hospice settings. Since the mid 1990’s, her research has focused on the role of thanatechnology (digital and social media) in coping with illness, death, and grief. She co-edited Dying, Death, and Grief in an Online Universe: For Counselors and Educators and educates students, professionals, hospice volunteers, and the public about the importance of planning for one’s digital assets and communicating one’s wishes about one’s digital legacy. Dr. Sofka is a past president of Association for Death Education and Counseling

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

Dr Erica Witkamp , Rotterdam University, Rob Bruntink, Journalist, Owner of Bureau MORBidee and Judith Rietjens, Associate professor, Dept. of Public Health, Erasmus University Medical Center

People increasingly do not only live their physical life but also have a digital life. They store parts of their life on electronic devices, like photos and documents, and expand their life to the internet and social media. Besides, more and more people create one of more new digital personalities, like an avatar in games. What will happen to these digital aspects of human lives when physical lives come to an end? And how will either the loss or the use of valuable digital data affect the bereaved relatives?

Talking about digital legacy and digital death is still in its infancy. In the Netherlands we started our research on this topic in 2019. We are involved in several projects:

1. “The Death Lab” (In Dutch: “De Dooie Hoek”) at Lowlands Festival, a yearly three-days music and art festival with about 60.000 visitors. We asked more than 500 visitors to complete a questionnaire on their attitudes towards and preferences for their digital legacy.

2. Subsequently some students studied attitudes and preferences of healthy people for their digital legacy.

3. On a small scale we investigated among nurses and nurse students their attitudes towards the role of nurses to support patients at the end of life to prepare for their digital legacy.

4. Together with a filmmaker and medical students, we developed series of short films where older participants with a limited life expectancy look back at their lives and share valuable lessons and insights with their family members.

In all projects one theme really emerged: the lack of awareness. The various participants indicated that they had hardly ever thought about what will happen to their traces on the internet once they died. In healthcare the participants believed the arrangement of digital legacy is one’s own responsibility. Therefore we developed three short videos to evoke awareness, both in the general public and among professionals. The videos turned out to support the discussion about the topic with citizens as well as with nurse students in focus groups.

But we have to speed up! Concomitant with rapidly growing opportunities to (infinitely?) continue life after death the concerns are growing too; concerns over dealing with this new dimension of palliative care, it’s value for bereaved relatives and the many ethical and practical challenges; concerns for our societies, for patients and families, for healthcare professionals and for researchers. Who cares?

Author biographies

Dr. , 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 Judith Rietjens. 

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

Tal Morse, Hadassah Academic College & Michael Birnhack, Tel Aviv University

How do digital technologies shape perceptions and behavior with regards to posthumous privacy? Our personal data is increasingly stored online, reflecting more and more aspects of our identities. Scholars observed a gap between users’ stated preferences to protect their privacy online and their actual behavior. This is the privacy paradox. Once users die, their personal digital data will become digital remains. Currently, there are a few options to manage access to digital remains, suggesting a possibility to control access to personal data, posthumously. These technological changes raise questions regarding posthumous privacy and the applicability of the privacy paradox to the posthumous condition. The article queries the persistence of the privacy paradox after the users’ death: Is there a gap between users’ preference regarding their posthumous privacy and their behavior when managing access to digital remains?

Drawing on a national survey of a representative sample of Israeli Internet users, we compared preferences and behavior regarding access to digital remains. The analysis yielded three different groups:

(1) Users who are interested in preserving their privacy posthumously, but do not act accordingly. For them, the privacy paradox persists posthumously.

(2) Users who manage to match behavior to preferences. For them, the privacy paradox is undone.

(3) Users who are interested in sharing personal data posthumously, but their (non)actions are likely to result in the opposite, namely, the online platforms will prevent others from accessing the data. We call this scenario the inverted privacy paradox. It is a new category, yet unobserved in the literature. We point to some explanations for the persistence of the posthumous privacy paradox and for the inverted privacy paradox.

The discussion deals with the intersection of technology and society and the emergence of new possibilities for manifesting the self posthumously and the need – if at all – to regulate access to digital remains.

Speaker Bios

Dr. Tal Morse teaches at Hadassah Academic College in Jerusalem. His research focuses on media and death, especially death online and mediated death rituals. His book, The Mourning News: Reporting violent death in a global age was published by Peter Lang (New York) in 2017. Morse earned his PhD at the London School of Economics and Political Science (LSE).

Prof. Michael Birnhack is Associate Dean (Research) at the Faculty of Law, Tel Aviv University. His research focuses on information law, especially privacy and intellectual property. He has served on the Israeli Council for the Protection of Privacy. His 2010 book, Private Space: the right to privacy, law and technology (Hebrew), won the Israeli Political Scientists Association Annual Prize.

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

Sharon Hartung, Captain (Ret’d), PEng, TEP, is the founder of Your Digital Undertaker

The world has gone digital and so have people’s estates. Digital assets may simply be electronic records, but they are the digital gateway to our lives. They are our memories, our money, and our records, making technology the new player at the estate planning table. Accelerated by the pandemic, clients may not have had a digital life before the pandemic, but they have one now. And that will have dramatic implications on advisor roles in estate planning, incapacity planning and estate administration as client’s have heightened expectations regarding their digital estates. This session is about digital assets in the context of the digitization of the entire global estate industry. The implication is threefold and understanding these digital drivers of change, and where they fit into the broader landscape of the estate industry, is significant. If today’s executor is a digital executor, and today’s fiduciary is a digital fiduciary, then today’s advisor must be a digital advisor.

Speaker Bio

Sharon Hartung, Captain (Ret’d), PEng, TEP, is the founder of Your Digital Undertaker®, which provides Digital Executor® consulting for advisors and clients on the tech management aspects of digital assets in estate planning. Sharon is the author of Your Digital Undertaker – Exploring Death in the Digital Age in Canada (2019) and newly released Digital Executor®: Unraveling the New Path for Estate Planning (2021).

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.