We sat down with Tracy Wheeler, Executive Director of End Well, to discuss End Well’s mission to transform how we think about and talk about end of life planning.
We’ve previously written about why we built Prisidio. Preparing for the best of life is most helpful when you can take a more stress-free approach. For many people today, managing daily life is fragmented at best. Start considering end-of-life, and it can seem even harder.
Prisidio and End Well share a vision that end-of-life preparations don’t have to be a burden. As Tracy puts it, “Conversations enable people to live as well as possible through to the end and leave their loved ones joy.”
Dr. Shoshana Ungerleider founded End Well in 2017 because, “she saw from her experience as a hospitalist physician that many people don’t know what their options are at the end of life,” Tracy tells us. “They’re pushed into the medical conveyor belt of care. Doctors are trained and hospitals are driven to keep people alive at any cost. Which often finds them in a hospital at end of life. And that’s at odds with the data – though 80% of people say they want to die at home, only 30% do.”
End Well’s solution? Help patients discover the options they have to live as well as possible and leave their loved ones joy.
The first step is recognizing end-of-life conversations aren’t a medical issue – they’re a human issue.
Planning future happiness for you and your loved ones
One way to make end-of-life planning less stressful is to view it as planning future happiness – both for you and your loved ones.
Tracy points toward the work of Going with Grace founder Alua Arthur: “Alua talks about this idea as thinking, ‘This is where we’re at. How do we make the best of it? Who are you? What do you want?’ And hearing the answers, she says, ‘Ok. Not impossible.’”
It doesn’t have to be complex. The answer may be as simple as knowing you find the color yellow peaceful – and then painting your room yellow.
“That’s how we talk about planning for the best,” Tracy says. “Let’s work on the things that are possible. Harnessing the idea of what’s best – how can you optimize your life for you? How can you customize your end-of-life experience for you and your loved ones? We’re already fascinated with hacking our health. But can we think further into how we hack our end of life in order to hack our life?”
That’s why viewing these conversations as a way to make living better can make all the difference. “What Prisidio allows people to do,” according to Tracy, “is to not be in a moment of panic. Rather, they can be doing their thing.
“So if they may know they want to be in a yellow room. The question can be, ‘How do I get to the place where I’m in a yellow room, and I’m listening to the Beatles, and the people I love are around me?’ The easier it is to communicate that information to the people you love, the better your experience will be.”
The importance of planning in advance
End Well and Prisidio agree that planning in advance isn’t just a matter of convenience. It’s the key to, as Tracy puts it, “liberating people from the snarl about what people encounter when things go wrong – that snarl can really make everything so much harder. And that can lead to illness of its own and be a vicious cycle.”
“That’s why it’s helpful to know what people want,” Tracy says, “thinking and planning in advance, so when the time arrives things are, or at least thinking is, in place.
“One of the things we know is a lot of people don’t want to be a burden. And it’s an enormous burden to work your way through passwords and documents to find or remember or discover where they are. These gray areas around people’s estates, around people’s stuff, can create moments of great tension for families.”
So how can families relieve that burden before it becomes overwhelming? As with so many things, conversation is key.
“Having conversations and documenting them is so important – the more you can articulate, the more you can make things clear, the less messy emotions can get in the way. That way, you know ahead of time whether you can get into a safe deposit box if you only have a key, or if you need to be on the bank’s record.”
Customizable, practical tools for living
“It’s the quotidian stuff that can get in the way,” Tracy reminds us. “There’s nothing worse than bureaucracy. Why do we allow these systems to accrete around us that then prevent us from being alive?”
“The more tools people have, the easier it is while living and going about their daily lives,” Tracy says. “And the more robust, the more customizable and practical these services are, the more they offer a whole package. It’s about alleviating stress.
“The most important gift you can give to people is to not be afraid of dying. It can be super helpful to not feel like you can’t talk about this with someone. Any tool that helps you be comfortable might be a helpful thing to have.”
Prisidio makes low-stress planning easier
Our conversation with Tracy reminded us of a passage from Donald Bathelme’s story, “The School”:
One day, we had a discussion in class. They asked me, where did they go? The trees, the salamander, the tropical fish, Edgar, the poppas and mommas, Matthew and Tony, where did they go? And I said, I don’t know, I don’t know. And they said, who knows? and I said, nobody knows. And they said, is death that which gives meaning to life? And I said no, life is that which gives meaning to life.
“At the end of my life,’ Tracy told us, “I want to understand why I was here. But I understand I won’t understand everything. In the end, it’s about the more we can help people say, ‘I’m OK with it. It’s not ideal, but I’m ok with it. I want one more ride in that mustang.’”
For more from Tracy and End Well, check out The End Well Podcast. And check out Episode 2 with Alua Arthur. We hope you like it as much as we do.
