Get in touch and let us know your thoughts! https://digitallegacyassociation.org/contact
Get in touch and let us know your thoughts! https://digitallegacyassociation.org/contact
As part of Commentary’s special feature on end-of-life care, James Norris, founder of the Digital Legacy Association, examines how a patient’s digital footprint is an increasingly common part of advance care planning.
The internet has been the biggest catalyst for change since the industrial revolution. It has changed the ways in which we consume and share information and, in doing so, the ways in which we interact with one another has changed forever. Recent Ofcom statistics reveal that adults in the UK now spend on average 22.9 hours a week online, with those aged 16–24 spending 35.2 hours a week online.
While online, many share personal thoughts, photos and videos on social media sites such as Facebook, Twitter, Instagram, etc. Prior to the internet, photos and videos existed only as physical assets (eg as photo albums, photo frames, video cassettes etc). Now, social media and connected devices (like mobile phones) allow these assets to be uploaded and shared online (often referred to as ‘in the cloud’). This allows conversations to break free of previous constraints and take place in real time. This enables friends and family members who may live many miles away to stay connected with their loved ones on a regular basis.
The Digital Legacy Association was launched three years ago at Hospice UK’s conference in Liverpool. It was apparent that people were not making suitable plans for their digital estate and that increased awareness, support literature, lobbying and training was required at a national level.
Upon death, the deceased person’s digital footprint (the digital information left online) and other media available about the deceased helps to form their ‘digital legacy’. For many people, the deceased’s digital legacy plays an important part in the mourning process. In the UK the deceased’s Facebook profile often becomes the main focal point to remember and share stories about a loved one.
Our Digital Death Survey indicates that the importance we place on our being able to view social media accounts following someone’s death is increasing year on year. For example, when respondents were asked: ‘If someone you care about were to die, how important would it be for you to be able to view their social media profiles?’ 45.2% of respondents replied ‘important’ or ‘very important’ in 2017, up from 37.3% in 2014.
The term ‘digital assets’ can refer to items such as music purchased through Apple, eBooks purchased through Amazon or photos and videos captured on mobile phone. It is increasingly important that the general public make plans for what should happen to their digital assets and their digital footprint in the event of death. Making suitable plans can help ensure sentimental photos, videos and documents are still accessible and not lost upon death. Pre-planning can also ensure that assets that are of monetary value, such as business files and purchased media, are still accessible.
Our research shows that most people are not making sufficient plans and as a result their digital assets – those of sentimental and monetary value – are being lost. When questioned in our surveys, 97% of respondents had made no plans to protect their digital assets.
It is important that healthcare and social care professionals speak with patients about their digital lives when having advance care planning conversations. For some people, simply telling a loved one the password for their mobile device before losing the ability to do so may be a suitable plan. However, more regular users of technology (who may use social media, gaming or have money stored and spent in PayPal, eBooks, music libraries etc) may prefer to document their wishes in a social media will.
Our research indicates that the sentimental value placed on people’s digital legacy will continue to increase each year. While working for the Digital Legacy Association, I have often received the feedback that these issues are ‘very important for the younger generation’. Although we fully agree with this statement, one in four people over the age of 65 in the UK say that they are active on social media (Office for National Statistics 2016), and so we argue that digital asset and digital legacy planning is an important area for everyone regardless of age, religion, gender or creed.
James Norris is the founder of the Digital Legacy Association, a professional body dedicated to raising the quality of end-of-life care in all areas relating to the proection of digital assets and digital legacy.
Joan Bakewell discusses all things digital legacy for her ‘We Need To Talk About Death’ series. The episode can be listened to here
Thank you for attending… what an incredible day!
The Digital Legacy Conference addresses, highlights and celebrates work that is being carried out in areas relating to digital legacy and digital assets. Read a review from this year’s conference below:
Digital Legacy Conference 2016 was free to attend took place thanks to the kindness of St Joseph’s Hospice, Seddon Smith Accountants and Leverton & Sons. We would like to thank the following speakers who contributed their time and expertise:
⏳ James Norris – Digital Legacy Association & DeadSocial.
⏳ Jane Harris Edmonds – Beyond Goodbye.
⏳ Dr Mark Taubert – NHS Wales & Velindre Cancer Centre.
⏳ Gary Rycroft – Dying Matters & Jospeh A. Jones Solicitors.
⏳ Peter Billingham – Death Goes Digital.
⏳ Evan Carroll – Your Digital Afterlife.
The Digital Legacy Conference is an annual, not for profit conference ran by: The Digital Legacy Association. This year it took taking place during Dying Matters Awareness Week.
All of the photos can be viewed here https://www.facebook.com/pg/DigitalLegacyAssociation/photos/?tab=album&album_id=245304605825006
Millions of people in Britain risk missing out on having their end of life wishes met and leaving their affairs in a mess for their families to sort out because they haven’t planned for their death, according to a new study released by the Dying Matters Coalition.
Today’s ComRes research, released to coincide with Dying Matters Awareness Week (18-24 May) finds that although the majority of us think it is more acceptable to talk about dying now than it was 10 years ago, discussing dying and making end of life plans remains a taboo, as a majority think that people in Britain are uncomfortable discussing dying, death and bereavement.
Despite this failure to talk about dying and plan ahead, 71% of the public agree that if people in Britain felt more comfortable discussing dying, death and bereavement it would be easier to have our end of life wishes met.
The research also finds that the majority of people (79%) agree that quality of life is more important than how long they live for. Only 2% of over 65s disagree that their quality of life is more important to them than how long they live for. Just 13% of people surveyed said they would like to live forever and only 8% said they would like to live to over 100. The most common age at which people would like to die is 81-90 (27%). Despite the fact that life expectancy is on the rise, only 6% of people aged over 65s want to live to over 100.
When asked about factors to ensure a good death, being pain free was the most important option, chosen by a third of people (33%), followed by being with family and friends (17%), retaining your dignity (13%), being cared for and able to die in the place of your choice (6%), being involved in decisions about your care, or if you are not able to for family and friends to be involved (6%) and having your religious/spiritual needs met (5%).
The survey also finds that three-quarters of people (75%) agree that providing end of life care should be a fundamental part of the work of the NHS, with almost two-thirds (62%) agreeing that end of life care should be a priority for the new Government.
Speaking today, Claire Henry, Chief Executive of the Dying Matters Coalition said:
“We need to change the nation’s approach to dying, so that all of us become better at making our end of life wishes known and asking our loved ones about theirs. Talking about dying and planning ahead may not be easy, but it can help us to make the most of life and spare our loved ones from making difficult decisions on our behalf or dealing with the fallout if we haven’t got our affairs in order.”
Professor Mayur Lakhani, a practising GP and Chair of the Dying Matters Coalition added:
“There are encouraging signs that talking about dying is becoming less of a taboo than previously, but too many people are continuing to avoid facing up to their own mortality and are not putting plans in place. The public and health professionals alike need to become more comfortable talking about dying and discussion options for end of life care. We know that many people have strong views about their end of life wishes, but unless they talk about them and plan ahead they are unlikely to be met.”