#HTE
Reimagining End-of-Life Care During the COVID-19 Pandemic
If the COVID-19 era has taught the world anything, it’s that no one is a stranger to drastic change or loss. The early phases of the pandemic in 2020 marked the beginning of an especially frightening time for hospitalizations and death—until somewhat recently, patients with severe COVID-19 had no choice but to enter hospitals alone, many tragically dying after intubation with no family by their side.
When designer and founder of Blumline, Natasha Margot Blum, reflected upon the most urgent healthcare challenge of the pandemic, she gravitated toward palliative care, death, and dying. Designers and volunteers all over the world activated in response to the pandemic. One community of healthcare innovators and human-centered designers formed quickly through a Slack group: the Emergency Design Collective. While there were a number of designers working on critical medical equipment like respirators, Blum and other practitioners began contemplating death and the end-of-life experiences that neither patients nor clinicians desired, but were happening by default due to the rapid acceleration and unpredictability of COVID-19.
In 2020, a storm of tragic stories emerged about emergency medicine doctors being forced to make tradeoff decisions around which patients would receive limited ventilators. In addition, there was a panic around how to store bodies of the recently deceased; these stories ultimately catapulted Blum’s impassioned team into action. Gathering her studio, Blumline, and a group of volunteers from the 2020-formed Emergency Design Collective, Blum went on a search to discover what sorts of contributions to current challenges related to death and family planning could have real impact.
Can we design better discussions around end-of-life experiences?
After some time, Blum’s team decided to focus on creating, as she describes it, a “self-discovery tool” that allowed individuals and their families to have a framework for hard conversations in the context of the pandemic. A tool like this didn’t just feel important as a way to discuss death, but as a way to discuss values and make meaning. As Blum notes, the team’s vision was centered around mental health: “it’s about reevaluating who we are and who we want to be so that we can define our identity, our legacy, and have the most rewarding relationships with the people in our lives while we’re still here.”
The team created the framework for what is now Famous Last Words, a website and downloadable playbook designed to facilitate a discovery process for each participating person, and to learn alongside their loved ones. Blum shares, “we created a delicately sequenced conversation, structured with and toward the core principle of agency. People choose their questions, their co-conspirators—the people with whom they want to embark on this learning journey—and the timing themselves. It’s a three-event series that culminates in tougher ethical questions around care at the end. You can’t ask people to start with the tactical first. Traveling from abstract to concrete, as we do in the design process, is essential.”
The document thoughtfully guides family and friends through questions and reflections on life, defining a “good death”, as well as clarifying needs and wishes. Participants are encouraged to conduct these conversations via Zoom in at least three sessions, and create an artifact of notes and memories that can guide care if health deteriorates rapidly, and create a beautiful record when someone does die.
Rapid prototyping & remote-first conversations
The team also implemented the use of technology like Marco Polo, an app that lets people string together video recordings of themselves with notes in their rapid prototyping process. Platforms like Marco Polo not only allow participants to spend more time ruminating on these deep questions, but they also inadvertently create an ephemeral video log of memories and reflections that vividly illustrate a person’s network of care. In the product’s final form, Famous Last Words is platform-agnostic—whether Zoom, Marco Polo, or WhatsApp works best is up to what’s most comfortable for the group.
The Famous Last Words guidebook helps loved ones navigate critical medication conversations, while also recognizing how these conversations are often stopped in their tracks due to their emotional weight and our discomfort with the topic. As Blum puts it, “The whole premise [of Famous Last Words] is that it’s up to you to own your story. This pandemic offers us an opportunity to activate a culture of intentional agency in a time where many people feel like they really don’t have any. And that feeling of helplessness and hopelessness is one that results in unnecessary, and sometimes undesired care. If somebody doesn’t understand the implications of what it means to choose a ‘do not resuscitate’ versus another form of care, that can lead to a lot of challenges. So we’ve tried to build that in the best way possible to guiding people while allowing them space, time, freedom, and ultimately giving them the stimulus.”
Research
Blum and her team’s work at Blumline starts with research, which was an important tenet for a project as serious as Famous Last Words that also required a quick turnaround. The team’s first step was reaching out to workers on the front lines during the pandemic, people like emergency medicine physicians, hospice and palliative care doctors, therapists, and people who lost loved ones. After those conversations and creating a journey map, Blum said with COVID “it became very clear once you cross the threshold into the hospital, your agency decreases immediately. So clearly, the greatest opportunity space is before that happens, and that means we’re working way upstream.”
Once they landed on wanting to focus on facilitating end-of-life conversations, the team began a series of different diary studies and competitive audits in order to sensitively explore questions like, how should the conversation be structured, with a trained moderator or as a mutually-led group conversation? What is the best way to frame death within a guidebook that addresses it so heavily? After rapid prototyping a number of potential solutions, the team decided to create a document that lived on its own in PDF form so it was as accessible as possible.
Challenges
With such a deeply contemplative mission, it’s easy to see why it would require a dedicated group of volunteer designers to bring something like this to life—but it brings up interesting questions as to how medical professionals must prioritize aspects of care to treat as many people as they do. Projects like Famous Last Words demonstrate that there’s much more room for designers to intervene and allow space for medical systems to explore deeper questions. As Blum puts it, “health care providers don’t think about care in a reductive way, but that’s the way that our healthcare system works—it is fundamentally structured in a way that doesn’t give us a lot of room to engage in care that doesn’t produce an immediate result, relief of a symptom or a situation, and death, dying, and care just doesn’t fit into a clean, idealized silo at all.”
Famous Last Words’ current solution to this problem is to generate support from one’s own personal connections and curious, like-minded people. Conversations are led by friends and family rather than medical professionals, illuminating the power loved ones have in ensuring a person’s death is handled with care. Blum says “There are so many amazing care providers, but a lot of care and certainly a lot of decisions happen in non-transactional, peer-to-peer moments. We don’t have economic structures or incentives to manage care the way we’d ideally want to, but that’s where community organization comes in, and support from pioneers like end-of-life doulas, and radically innovative remote palliative care.”
Famous Last Words serves as a helpful reminder to us all, especially in these fragile times, that it’s crucial to band together as a community to care for our own. Secondly, it’s more important than ever to engage more with the concept of death, and make conversations around what we want for our own end-of-life experience easier. “We’re all going through this together and so it doesn’t make sense to narrow down to a very specific design audience when everyone is thinking about their mortality. That’s why we solicited perspectives from people who had family members or loved ones who were very resistant [to that conversation] so that we could understand how to soften the tone and soften the perception of confrontation,” Blum said. And of course, the team aimed to give the topic the meaningful weight it deserves. Dan [Tuzzeo, design researcher and content strategist] put it beautifully: “it was important to strike a balance between normalizing the conversation while still respecting the subject matter—and the people having the conversation.”
With the delta variant creating yet another curve in this saga, this is still just the beginning of an opportunity to embrace a “re-design your life” mindset, rethinking what life is, and what kind of healthcare and dying experiences are possible.
For anyone who wants to uncover their own values, legacy, and boundaries (everyone, the team hopes) and engage in a meaningful conversation about life and death, you can access the Famous Last Words playbook here.
https://www.core77.com/posts/109477/Reimagining-End-of-Life-Care-During-the-COVID-19-Pandemic