Part 1 interviews: Experts on design's role in deathcare, bereavement experience, and deathtech
Part 1 of the series of interviews where a few guests share their thoughts and experiences in deathcare, bereavement, deathtech, and adjacent practices in the post-life, and after-life UX and CX.
Welcome to the part one of this interviews’ series where we have a few industry experts who share their thoughts and experiences in the deathcare, bereavement, grieving experiences of the people.
In each post, different experts answer one common question. See the backstory for more context of these interviews.
Today’s question: The first question in the series is:
“The digital teams worldwide talk about customer journey and customer experience. Sometimes, we see it in the industry specific context too, such as the patient-journey and patient-centric experience in healthcare. However, when someone dies, the bereaved-journey or the bereavement experience of the family and the loved ones are often fragmented as they deal with grief, things to do, build memories, hire service providers, deal with notifications and follow up with agencies, and so on.
In your experience, what do they actually need and where has the digital design failed to build that integrated or unified experience for the bereaved-journey?”
The guests
Our guests for this question are here.
William Turner Health is a graduate of the Mortuary Science program from Miami-Dade College. He received education on becoming an End-of-Life Death Doula through the University of Vermont certificate program and is the co-owner of Calling Hours. See their LinkedIn.
William says—
The bereavement journey is indeed fragmented as a person navigates the practical, emotional, and social dimensions of a death of a significant person in their life in order to begin to unpack grief. In death care and from the perspective of a funeral director we need to first help bring the administrative task into focus with greater support so that we can create more space for the dimension of more meaningful ceremonies. When we are able to quickly secure biographical information, contracts, and authorization forms we help make space for the real work of healing to begin in earnest.
I come back to a statement of Dr. Alan Wolfelt, a pioneer in modern death education, who has given me an important framework that I keep top of mind always—“When everyday words and actions are inadequate, the ritual of ceremony provides a needed structure of what to say and do. (Source)
Funerals also help us acknowledge the reality of the death, remember the life that was lived, support one another in our grief, express our grief outside of ourselves, consider the meaning of life, and begin the long, hard process of coming to transcend our grief and move toward a new wholeness.”
Many funeral homes are still navigating the space between the analogue and digital worlds themselves and so we need to first address if a funeral home is able to do this for themselves in a more seamless manner, from offering products like digital signatures to streaming the ceremony to bring the stories of of loved ones into a all inclusive space for our collective digital afterlives.
We are seeing the rise of death tech companies trying to offer CRM softwares that integrate websites that offer online price shopping, broader planning, and streaming services all in one place. The question of how best to bring a more unified experience pivots on who this design question is best asked of.
This might be best achieved by identifying users who want a digital experience rather than asking the larger death care industry to settle upon a specific platform.
Reaching users who are more fluent with digital offerings that address grief guidance long before the end will yield a more proactive place to prepare and then could connect them to local end of life resources, broader digital communities, and hopefully more connection with the natural world.
I'm weary of digital solutions that encapsulate us and so my hope is to see a tool that helps someone just discern one next step forward because the place of grief is often a fog.
Sarah Miller is a certified grief coach and end-of-life doula who brings a profound depth of personal and professional experience to her grief coaching practice. Having navigated through significant personal losses, Sarah's approach to grief support and end-of-life care is deeply empathetic and effective.
Sarah says—
In my personal experience with navigating multiple losses in my own family, I actually found the time immediately surrounding a death to be the “easiest” to get through. Now, obviously, there is nothing easy about someone dying, but this was the time where I found the most support from my community. People called, they showed up with food, to help me plan the funeral, and so forth. After about six weeks people’s lives start to go back to normal and I felt left behind with an Earth shattering new reality. I have also seen this experience with my clients.
What do bereaved individuals actually need? I think above all, people experiencing bereavement need at least one person who really gets it. Who understands what they are experiencing, doesn’t try to change or fix it, and is able to sit with them in the muck of grief. Grief does not follow a perfect timeline
What people experiencing grief need:
Community Support—People who get it
Practical Support—With all the logistical tasks
Time
Grief education
Community Support
The number one question I get asked from people is: “My friend’s mom, brother, or the pet just died. What should I do?” The majority of people want to be there for their friends who are experiencing bereavement, but most people do not know how to actually show up for those friends. I am here to say: the best thing you can do to support a bereaved loved one is to just show up for them. Show up for them in a way that you are not trying to fix, change, or solve the fact that they lost something they love very dearly. Show up for them in the very simple and mundane tasks of doing the dishes, cleaning their floors, and even just sitting in a room with them silently to keep them company.
I wish there were more digital tools that helped people show up for their loved ones. It’s often overwhelming to know how to show up beyond bringing over casserole dishes.
Time
The fact of grief is that it doesn’t run on a perfectly designated timeline. Grief comes and goes in waves.
People need flexible time to grief
Modern bereavement leave policies rarely support the ebbs and flows of grief
3-5 days (taken consecutively) are not enough
People need flexible time as needed to take off when they are having ‘grief days’
Digital opportunities:
To educate managers and HR professionals about the realities of being in the workplace while grieving.
They also need bereavement policies that support the actual greif timeline
Grief Education
It’s often easy to know your are grieving when someone dies—this is a socially acceptable form of grief
However, for more ambiguous forms of grief such as divorce, motherhood, breakups, and change of identity it’s often hard to know that you are actually experiencing grief
Even for people who know they are experiencing grief, they often don’t know what is “normal” and what isn’t “normal” when it comes to grieving
Digital Opportunity:
To educate people all the different ways that grief manifests
What they can expect - all the lesser known mental, emotional, and even physical symptoms of grief
How long those symptoms last (could be forever!)
To educate them WHAT to do with those symptoms
Ginger Liu hosts a podcast called the ‘Digital afterlife of Grief’, which explores Artificial Intelligence, Art, and Entertainment. In the podcast, Ginger discusses how technology from Photography to AI has shaped human agency, how we grieve, and post-death. See their LinkedIn.
Ginger says—
There are multiple factors at play during dying, death, and bereavement. Our experience is unique and there isn't a one size fits all solution. Grief is individual and dependent on the relationship with the deceased.
Then there's inadequate funding and consequently little support in the healthcare system. It is sad to say that those who have loved ones who spent a long time dying, may use that time to get to grips with the end.
There's also time for the able dying to get their affairs in order and pass on their legacy. The dying can use death tech companies to create an autobiography or pass on their data. Often it is the bereaved who have to sort out the deceased's belongings or close bank accounts. There are several AI and non-AI platforms that support the housekeeping side of dying and death. I believe the greatest innovation in AI in healthcare is in grief and mental health chatbots. These talking therapies can help with grieving.
Studies have shown that social media platforms like Facebook, have supported the bereaved because they have provided a space for like-minded people to grieve and support one another. Before the latter part of the 20th century, death wasn't hidden away in graveyards and the dead were mourned at home by the family. After the 1960s, the bereaved were expected to get over a death, never talk about it, and get back to work. The bereaved grieved alone. Online spaces like Facebook Groups or Facebook Memorial pages are places where the bereaved can post and chat about the dead.
Now with AI, we have the potential to talk to the dead and talk out our grief to a chatbot. Designing chatbots and platforms that have a legal framework, are accountable, are developed by health experts, and protect personal data.
Kristen Hare is a journalist, author and faculty member at the Poynter Institute, where she trains local and early career journalists. She also spent five years writing obituaries about regular people for the Tampa Bay Times. See their LinkedIn.
Kristen says—
Death is obviously an emotional experience, but it’s one that also has a lot of business and money involved in it. I have experienced and watch others experience a fog that settles in with grief, and it makes navigating something like funeral arrangements and obituaries very hard to manage.
It might sound strange to say it in this context, but I think the death industry, and paid newspaper obits in particular, has some big design flaws.
Obits, for instance, can cost thousands of dollars for a few hundred words at a time when people have other options and a lot of other expenses. While there are some free options available on different platforms, there hasn’t been wide adoption.
My own thoughts on this question—
While doing the discovery to build Around and in my conversations with many industry experts and coaches, I can see that dying brings a lot of personal and contextual variants in how people prepare for, deal with, and respond to dying or bereavement. The challenges are multi-dimensional, multi-faceted, and socio-technological, and not only the design.
This means that the bereaved journey is unique for different segments even if they have similar needs and same concerns, and their expected outcomes are also similar. Design can contribute to these waves of convergence and divergence by identifying the right success criteria of the bereaved at the right time in the context of their needs and goals—for an individual and for a network’s collective wish.
This is an interesting challenge and it should excite the designers and the makers.
Thank you for reading the post and watch out for the next episode with the second question in this series, in a few days.
Related readings:
I'm so interested in this series. Thanks for taking on a really sensitive subject that is not talked about enough.