Lucy Clay, 26, was at work when her phone buzzed with a message from her mother. Her dad was seriously ill, and doctors had raised the possibility of discontinuing treatment. Lucy was thrown into a cycle of anticipatory grief – and she turned to technology to help her with the waves of anxiety that she was experiencing, and to prepare herself for the next stage of her father’s palliative care.
“It’s been incredibly comforting to know that there is a resource that you can access anytime you need it, day or night,” she told Observer. “When things are really bad, I can’t bear the thought of having to explain what is happening. There’s no substitute for having a human sit with you in the horror, but sometimes the silence of technology is a welcome alternative to the well-intentioned friend.”
For Lucy, who is herself a funeral director, the idea of death is a part of everyday life. Yet her career could never prepare her for the reality of caring for a terminally ill parent. After all, losing a loved one is an overwhelming experience. Family members and friends are often expected to deal with the vast administrative burdens that come with death at a time when they desperately need to grieve. And although death eventually comes for all of us, a surprising number of people have no real plan in place for when the end of their life approaches. Data suggests that although 90% of Americans think that talking to their loved ones about end-of-life logistics is important, only 27% have actually done so.
Enter the end-of-life industry. Over the last few years a plethora of apps and services, like those used by Lucy, have sprung up that promise to ease the process of planning for death. Whether it’s noting what healthcare that you’d like to receive, recording memories so that a curated legacy is left behind, or uploading important documents, there are plenty of options on offer. Some target a specific aspect of the death planning process, such as Safe Beyond, which allows users to record messages for the people that they leave behind to access after they pass. Others, such as leading end-of-life planning app Cake, offer a more rounded approach, guiding individuals through everything from writing a will to planning an eco-friendly funeral.
Lucy now uses a range of apps that provide solace in an incredibly difficult time and help her to understand how best to manage a parent’s end-of-life journey. For her, the timing of technology’s increasing popularity when it comes to grief and end-of-life care was crucial. She describes the experience of looking after an extremely sick parent as feeling forgotten about – services and contact with care teams was limited due to COVID restrictions, and she found herself finding comfort, information and community in digital spaces instead. It’s a pattern that’s been seen across the industry, as online apps and services have seen a boost in their subscriber base over the course of the pandemic.
Liz Eddy launched end-of-life planning app Lantern in 2019 after struggling with the death of several family members. Months later the pandemic hit, and Eddy found that the app was flooded with users, an increase of 450% within two months.
“It was bizarre timing,” she says. “Obviously, we had absolutely no idea that the pandemic was coming, but within a month of launch we were starting to hear about COVID.”
What surprised Eddy the most about her inflated user base was that most new sign-ups weren’t people approaching the end of their life, or even at an age when individuals usually start to consider making plans for their death (only around 14% of Americans under the age of 30 currently have a will). In fact, the Lantern team found that the majority of new members were between the age of 25-45, a much more significant proportion of their user base than they had seen pre-pandemic.
“People are aware of their mortality and the need for pre-planning, but very few people actually do it,” she explains. “Something like COVID gives people an immediate reason… it’s a reminder of how unpredictable life can be.”
Someone who is finely attuned to how important technology can be when life takes an unpredictable turn is David Kessler. David lost his twenty-one-year-old son suddenly several years ago and found himself embroiled in a logistical nightmare when trying to close his late son’s bank account. He discovered Empathy, an app that claims to streamline end-of-life bureaucracy and promises to automate some of the more complicated aspects of the post-death process. David, who now works as a grief expert, was so impressed by how technology could reconfigure end-of-life planning and processing that he ended up joining the Empathy team, where he now works as the Chief Empathy Officer.
“There’s no denying that COVID has made grief a more prevalent topic,” he says. “Loss has no demographic. It affects everyone at some point in their life… technology can’t promise to take the pain away, but it can hold your hand through the process whilst also offering guidance in the often unknown terrain of grief.”
In a world where much of our lives take place online, it seems only natural that death should find its own digital niche. The pandemic has boosted an already burgeoning industry, causing younger generations to reflect deeply on what they want to leave behind. Mark Taubert, a palliative care doctor who has been working throughout the pandemic told us how apps can prompt his patients to think about preferred places of death or make their wishes known ready for when they are too unwell to communicate. He describes the relationship between technology and end-of-life care as deeply complex, acknowledging that the way that we manage grief is influenced by the people around us, society, and our own experiences – and that the pandemic has been crucial in prompting us to consider how technology might play a part in both life and death.
“Technology can nudge us into asking the right questions about what we’d want towards the end-of-life, but it can’t help us answer those essential questions,” he says. “There are sites, videos, and apps that talk very openly about choices we might face at the end of our lives, and it seems like these are prompting people to take control and actually tell their clinicians what they would and wouldn’t want. I hope that technology pushes us further into that openness and peer-supported patient empowerment.”
For Lucy, who is now living with her parents so that she can play a more active role in her dad’s care, the support of her colleagues and family has been crucial, but she says that without technology she would have felt “a whole lot more lost”.
“Technology and apps help me sit in the waves of anxiety that come with knowing that someone you care about is suffering,” she says. “Sometimes I feel like I’d do anything just for some rest from the distress. In a time when most of my usual relaxation and distractions techniques have failed me, technology has helped me to find solace.”