#HTE
3 Ways to Reimagine the End of Life Experience
Over the past few months, designers and healthcare providers from around the world have been collaboratively working on reimagining the end of life experience—one of the most critical challenges facing our aging populations.
Each year around 55 million people worldwide and over 2.5 million in the United States face the end-of-life. In the U.S., the end-of-life experience has shifted dramatically since the 1950s, as death has moved away from the home into institutions like hospitals and nursing homes. By the 1980s, less than 17% of people died at home. We believe the people and unmet needs behind these numbers inspire a huge opportunity for design.
In June, Core77 spoke with Dr. BJ Miller, an advisor for the OpenIDEO challenge and Senior Director and Advocate, Zen Hospice Project, and Dana Cho, IDEO partner and Managing Director of IDEO Palo Alto, about their work, insights from the stories collected on OpenIDEO in the first phase of the challenge and how design can truly make an impact in people’s end of life experiences.
We followed along as the challenge progressed and now, with the 2016 Core77 Conference right around the corner where we’ll be featuring Dana Cho as a keynote speaker, we wanted to followup with three major themes that emerged from over 300 contributions to the OpenIDEO challenge.
Healing Sounds
Of the top 10 ideas for this challenge, two of them linked sound and healing. Yoko Sen’s “Sound Will” is working to create a sound environment within hospitals to empower patients and help shift the conversation from, “disease control and prevention to a focus on personal spiritual and emotional needs."
"Music at the End of Life” from Ned Buskirk is a music hospice program that encourages local musicians to not only build relationships with the dying but also act as modern day griots, singing the personal stories of those who are dying or have passed.
Both of these powerful projects center the patient’s humanity and dignity and bring an element of holistic wellness into an often sterile space.
Connected Education and Planning
Technology can only solve so much of a problem—general education around the space and planning for patients and their loved ones have to be central in designing for death. Justin Magnuson, Living Fully Handbook, is a website designed to encourage intergenerational and community conversation around planning for one’s end of life experience. The idea of “connectedness” is central to Magnuson’s proposal—between patients and caregivers, community and resources, and providers outside of their local networks. Liz Ramsay’s “In My Hands” website is similar in scope in that it empowers people to plan their own path for their end of life experience.
Dawn Gross proposed “Death Ed,” an educational course targeting grade school students. In her proposal, Gross pointedly explains, “Today, there are drills for lockdowns and earthquakes, yet nothing about death and dying, a practice arguably more prevalent and a part of life than sex."
Intimate Storytelling
Storytelling is central to humanizing the end of life experience. Patients can feel disconnected from the world beyond their four walls and technology enables patients, family and caregivers to connect with one another in new and interesting ways. Jim Rosenberg’s "I Know Something,” is a proposal to set up a peer-to-peer storytelling platform connecting people around the world in their journeys.
The end of life is a universal experience. Yet when you are in the experience it feels like alien, uncharted territory. Everything is new—the emotions, medical questions, financial worries, family communication, legal requirements, you name it—even though literally millions of people have stood in your same shoes before. How can we learn from everyone who has gone before us and break through the sense that we are in this alone?
Another tech-enabled project, Ken Rosenfeld’s “Get to Know Me” , enables patients and their families to share their personal stories with their caregivers through a web portal and in-room “story” tablet. As Rosenfeld explains, “It will help providers gain a deeper understanding of the individual behind the patient, and also permits families to connect with, and reflect on over time, their loved one’s personhood and deeply-held values.”
And the most jubilant of the ideas is Vibhu Krishna’s “Vykarious,” an online platform where strangers can help check off items on patient bucket lists. The simple but effective idea allows patients to “lead a mission” and “transform the traditional bucket-list into a dynamic journey towards fulfillment and deep human connection.”
More on the Top 10 ideas to emerge from OpenIDEO’s challenge on reimagining the end of life experience here.
Learn more about designing for death at this September’s Core77 Conference in Los Angeles. Buy your ticket today!
http://www.core77.com/posts/55602/3-Ways-to-Reimagine-the-End-of-Life-Experience