CU Boulder researcher awarded NSF CAREER grant to study our digital end-of-life
It’s inevitable that at some point we must all “get our affairs in order,” and when we do, there are checklists, policies and professionals to help create everything from wills and trusts to advance directives.
But a key element––guidance surrounding technology and end-of-life planning––is missing, says Jed Brubaker, an assistant professor in Information Science. To close this gap, Brubaker is embarking on a five-year research project supported by a $549,985 CAREER grant from the National Science Foundation––one of the most prestigious awards given to faculty in the early phases of their careers.
“From the hospital to the cemetery, our deaths are already highly designed. Our digital deaths need to be as well,” says Brubaker, who has conducted research on post-mortem data for the past decade. In fact, one of the first applications in this arena––Facebook’s Legacy Contact––was built on research he conducted at UC Irvine as a doctoral student.
“Everyone aspires to a ‘good death’ – one in which our wishes are honored, our loved ones are cared for, and our legacies endure,” Brubaker says. “As our lives are increasingly online, this research project will provide people with guidance on how to include technology in their end-of-life plans while also creating best-practices for technologists on how to design systems that support and honor these plans.”
Over the course of the project, the research team will work with terminally ill patients and their families as they develop end-of-life plans. Based on this work, they will develop best practices and tools for people engaged in end-of-life planning, while creating guidelines and frameworks for technologists to enable technology to support those plans.
Brubaker has assembled a professional board of advisors–– including medical professionals, estate planners, death doulas, archivists and spiritual leaders––to serve as advisors to his team.
We caught up with him to find out more about the research project––titled “Digital Hospice: Human-Centered Design for Personal Accounts and Data at the End of Life”––that will shape the next five years of his career.
Why is it important to create an end-of-life technology plan?
By some estimates, the average internet user has over 190 accounts and produces over 850GB of data per year, but technologists have little guidance on how to create systems that consider their users’ inevitable deaths. Likewise, users have little guidance surrounding technology when it comes to end-of-life planning. Over the last five years, our research has shown that the best way to address post-mortem challenges is through pre-mortem planning.
At what age should someone start putting their digital affairs in order?
I think it’s hard to provide a concrete age because it really depends on your life circumstances. It is common for people to write wills once they have children who they want to make sure are cared for. However, our digital lives cover far more territory: If your parents don’t have a will, there can be some complications over what to do with the house after they die, but at least there are property laws to fall back on. Online, it gets complicated. With most online platforms you can’t create a plan––so it’s closer to locking up the house and saying that no one can even enter it.
What changes do technologists need to make so that getting digital affairs in order is easier?
When it comes to technology, we are at the beginning of this journey. Currently, there is almost no support for end-of-life plans. I believe that all technology platforms need to allow people to plan for their deaths––but what this looks like is going to be different from platform to platform. Some accounts need to be shut down, some need to be archived, some may best serve as memorial spaces for communities. Understanding what the diverse needs of users are and how technology can support those needs are at the heart of this project.
Your research will be closely aligned to a hospice care model. How do the principles of hospice care translate to a digital perspective?
I have argued that technologists have failed to consider the “whole human,” including how we die. It is a similar critique that gave rise to the modern hospice care movement. In hospice, patient-directed goals are prioritized, including physical, emotional, spiritual and social needs.
Hospice care faces death head on, providing support to their patients during the final phase of their life, and technology must do the same. We should provide tools and consultation as users consider their options. We should support them in developing a plan aligned with their needs and goals.
The hospice care model often involves families. Is there a way family members should be involved in putting digital affairs in order?
Absolutely! It is critical to include families, both biological and chosen, because, at the end of the day, a good portion of end-of-life planning is done on behalf of those families. By working with patients and families, we will also identify the critical short-comings of current online platforms, and develop solutions and guidelines that can help technologists improve their systems to consider our mortality.
What we have learned over the last decade is that ambiguities and unfamiliarity get in the way of end-of-life planning. When it comes to technology, people can describe their wishes, but typically only in broad strokes. As a result, people often put off making specific plans, leaving it up to the wishes of a loved one after they die. I can’t tell you how many times I’ve heard someone say, “Well, I’m not going to be around…”
The problem is that our technology hasn’t been designed to consider who will be around. When we interview loved ones who are left with accounts, they have such a strong desire to respect the wishes of the deceased. They just don’t know what those are. That is why we will be working with patients and their families––to help them articulate their wishes, and in the process, learn what types of issues all of us need to consider as we make our own plans.
How will the public learn about how to put together an end-of-life technology plan?
One of the most exciting parts of this project is how it will let us give back to the public. We will be building guidelines, handbooks and tools to help the patients and families we are working with. These resources will be available to the public as well.
In a couple of years, we will be launching a “digital end-of-life clinic,” similar to the pro-bono legal clinics that many law schools run. Not only will the clinic host all of these resources and tools, it will also offer workshops and provide individual consultations for people.