Farewelling: have you got your digital affairs in order?

Getting our affairs in order before we die used to be about money, property and making a will. But in today’s digital world, a lot of our personal things and mementos are on phones, websites and social media platforms ... in the Cloud, wherever that is!

PhD student and Marie Curie nurse Sarah Stanley is becoming an expert in ‘digital legacy’ and how to manage it, both for the peace of mind of the dying and for those left behind. We spoke to her.

Q. Sarah, what is a digital legacy exactly?

Anything digital that is left behind after a person has died. This can be of sentimental value -photographs, videos, music libraries, voice notes, gaming profiles – monetary value – online bank accounts, PayPal, cryptocurrency, gambling accounts. Some of it overlaps; for example a gaming account which might be very sentimental due to the time spent creating an avatar might also hold monetary value as there are often ‘paid for’ elements. One way to get you thinking about your own digital legacy is this … Have a think about what’s on your own mobile phone. What would it mean to you or your loved ones if it was lost following your death?

Q. Pre-internet, if someone died you could find their life admin in a cabinet or chest of drawers. Today, we keep things in the ‘cloud’ – what are implication of this radical change when there is a bereavement?

Losing access to a person’s digital legacy has been described in the literature as a ‘second loss’ which can have a massive impact on grief and bereavement. I worry that there is little realisation about how much we do and own digitally. Technology has developed so quickly, and the COVID19 pandemic sped up its use and adoption across all age groups. So, for most people their digital footprint is continually increasing. Technologies are moving fast and becoming more intelligent … Which means that our digital legacies are going to continue to grow.

Q. What sort of problems can arise?

A few became apparent during my Masters study at LJMU. I interviewed palliative care healthcare professionals to understand their experiences of supporting patients to manage digital legacy. I found:

• Not discussing digital belongings: This is really the root to the other problems. If we are not talking about what we want to happen to our digital belongings, as we would a will to determine what happens to our physical belongings, then we are not recognising how important this could be in the future.
• Losing access: By not discussing our digital assets we are risking our loved ones losing access following our death. Most devices use biometric recognition to unlock now, meaning that they are more secure than ever. But they potentially hold a lot of value.
• Creating digital memories at the wrong time: For those living with a terminal illness it would be important to get the timing right. Creating a video of a person who looks frail, with a weak voice, might not be a memory that person wants to leave behind – or that a bereaved relative wants to receive. This highlights the importance of speaking about the topic early.
• Conversations across generations: Young people are being brought up in a digital world, They are so used to technology, and use it with ease. It is likely that sentimental digital belongings will mean a lot to them in the future, and it important that we understand how to make younger people part of this conversation. I had a conversation with my 16-year-old daughter recently about digital legacy. She was unsure what it meant, and interestingly when I explained she replied: ‘Well wouldn’t that just be legacy?’ Digital is the norm for younger generations.

Q. Sarah, to what extent can digital legacy negligence contribute to a sense of loss or grief?

In my own personal experience, losing access to memories can have a massive impact on grief. Some people find that in bereavement it is important to maintain a bond with their loved one following their death. One of the ways that we might do this is through memories – photographs, videos, voice recordings, music. If a bereaved person feels that they are unable to maintain that bond there are implications on their grief – it could be prolonged and more difficult to navigate.

Q. So we need to get our digitals in order, then? But how straightforward is that?

Not very! I suppose the best starting point is to consider what you own digitally, what it means to you, and if you want someone else to be able to access it when you are no longer here. Each platform has different rules, so it’s learning about how to manage these individually … The Digital Legacy Association have some great resources: https://digitallegacyassociation.org/for-the-public/

For photographs and other memories, it might mean a conversation with loved ones about how they would like to receive these … printed albums, USB stick, access to devices… and then thinking realistically if you could do this. For example, I know some families who print yearly photo books for their children.

Q. You work in palliative care for Marie Curie, have you found evidence that the ‘journey’ to sort out digital things, like photographs, can be a source of comfort or joy to patients and families?

Honestly, I don’t think people are thinking of it yet. However, when I have spoken about digital legacy within palliative care settings there is a realisation about how important this is becoming both for now and in the future.  Healthcare professionals feel that managing digital legacy could be empowering, describing how when a person’s physical health deteriorates sorting digital belongings, from a bed or chair, could give a sense of achievement. I have also had conversations around how managing digital legacy could be a family activity, carried out across generations – including children more in conversations about death and dying.

Q. You have commented in the media about this topic - do you think there is big media interest in this because so few people are on top of it?

I think media interest has certainly grown in this area. I think there has been a bit of a realisation that this is not just an issue for palliative care, but for all of us. I am glad that I have been able to contribute to articles outside of academia, such as Good Housekeeping, as I think it is important for us all to start considering our digital legacy – and these articles might just get the conversation going!

Q. What is the scope of your PhD and what do you hope it will contribute to the debate?

For the PhD I want to gain an in-depth understanding, from the participant’s perspective, of the importance of digital legacy. I’m interviewing people receiving palliative care, caregivers, healthcare professionals and bereaved people to understand their lived experiences and how this may be used in planning for the end of someone’s life. The aim is that the findings will inform our understanding of digital legacy and subsequently how it can be used to improve a person’s quality of life when planning for their end of life. This study also has the potential to explore to explore how digital memory making can support end of life care planning. There is currently little research in this area, and I hope that this PhD study will help inform changes to both policy and clinical practice in the future.

Sarah Stanley is a PhD student in the School of Nursing at Liverpool John Moores University.