Welcome to Sentivia

Okay, let me tell you a bit about who I am and why I'm so passionate about this topic. You see, my reason for waking up each day isn't something most people experience – it took a jolt of 11,000 volts to truly wake me up, in a way. Let me explain.

Back in my sophomore year of college, a group of us were just being young and reckless, the way college kids often are. We decided it would be a brilliant idea to climb on top of a parked commuter train, you know, the kind with the live wires overhead. I went up the back, and the current hit me. It surged through my arm and out my feet, and that was it. I was hit with a massive electrical shock. I know, it sounds crazy now, and I know you might be too polite to ask, but I'm just being honest. That night was obviously a turning point for me, it marked the beginning of my own close relationship with death, *my* death. It also launched me into what would be a long period of time as a patient, or as I like to think of it, a "sufferer" a term that really applies to all of us in some way.

My experience with our healthcare system, which is full of both dysfunction and brilliance, led me to become a physician, specifically in hospice and palliative care. So, I’ve seen things from *both* sides of the bed. I can honestly tell you, the people who go into healthcare genuinely want to help, they mean well. However, we're often unintentionally caught up in a system that doesn't always serve people well. And the problem with the system as I've come to see it, is that it's designed around diseases, not around people. It was designed badly, which is heartbreaking. Nowhere is that poor design more apparent, and the need for real change greater, than at the end of life. There, everything is so concentrated and there are no do-overs.

My purpose here is to bridge the gaps between different fields and invite design thinking into how we approach dying. We need to intentionally and creatively shape the dying experience. We've got this immense opportunity to re-think and re-design how we die, not just for each of us but for society as a whole.

Most people's deepest fear about death isn't about being dead, but about *dying* and the potential suffering involved. That's a huge difference. We have to understand and differentiate between suffering that's a necessary part of life, from suffering that is avoidable, because one is essential and one is not. Suffering is part of being alive. Things that are larger than ourselves, like my accident, and I learned to accept that this is part of my life. Things like this put things in proportion. Another really interesting thing about this kind of suffering, the necessary stuff, it's the thing that links the people providing the care and the people receiving the care, they are human beings with a shared experience of what it is to suffer. This is really where the healing happens when it’s compassion being shown and experienced - that's the idea of suffering *with* someone.

On the other hand, much of the suffering we encounter is totally unnecessary. It’s made up by the system. But the great news is that since it's made up, we can change it! How we die is something that we can absolutely impact. Recognizing that distinction, the difference between the necessary and unnecessary, is our first design cue. As caregivers, our main job is to relieve suffering, not to pile on more. My job as a physician, I see myself as a reflective advocate. Palliative care, which I am passionate about, it’s not just end-of-life or hospice care as many believe, it’s about living well and comfortably at any stage in your life.

Let me tell you about Frank, he's been my patient for years now, and he’s been a powerful influence. He has advanced prostate cancer and HIV, and while we manage his pain, we spend most of our time actually talking about his life – *our* lives, in fact. Through these conversations he grieves, and he keeps up with his losses as they occur so he can really just take each moment as it comes. Frank is a real adventurer and he hates regret, so it wasn't surprising when he wanted to raft down the Colorado River. Many people thought it was a terrible idea given his health, but he was going to live his life how he wanted to while he still could! It was an amazing, challenging trip, and so freeing for him! His decision is one that many of us would make, if only we had the support we needed to understand what's best for ourselves over time. It's about changing our perspective.

When I returned to college after my accident, I changed my major to art history. I wanted to learn to *see* in a different way. It taught me that perspective, and that ability we humans have to change the way we see things. To turn suffering into something beautiful, almost like alchemy. This ability I apply in my work now at the Zen Hospice Project where we have a simple, beautiful ritual for when someone has passed. We pause as we wheel the body through the garden and anyone can share a story or a song, and we sprinkle the body with flower petals. It’s a really sweet way to send someone off, a warm image that welcomes grief and not fear. Compare that to most hospital experiences, with the bright lights, beeping machines, and cleaning crews swarming in the moment after someone has passed away. The body is taken away and it's like they never existed at all. Hospitals serve an important purpose, but they aren't designed for living and dying. We put way too many expectations on them.

I’m not saying our institutions can’t be more humane. I saw this in my time in a burn unit at St. Barnabas. Despite everything, I was given amazing care, and one night it snowed. My nurses were complaining about having to drive through the snow. My room didn't have a window, but I could imagine how it looked, how it fell, how it felt. The next day, one of my nurses smuggled a snowball in for me. And holding that snowball was just amazing, the coldness on my burnt skin and watching the water drip down was incredible. In that moment, just being alive and a part of this planet meant more than living or dying. It gave me the inspiration to try to live, but also to be okay if I didn’t. Those little stolen moments matter more than you can imagine.

Through my work, I've seen many people who were ready to die because their lives had just become so unbearable, so isolated and ugly. We have record numbers of people living with chronic illness. We just need an infrastructure that can handle that, it is time to create something new and vital, because we have to. The ingredients are there: policy, education, training, systems, facilities, we have so much that designers can use as information. We know people near death value comfort, not being a burden, and existential peace. Through our work at Zen Hospice, we’ve learned so much more than that. Little things aren't so little, like Janette wanting to smoke again so she can feel her lungs fill. Priorities change. Or Kate, who would rather have her dog at the foot of her bed than undergo more chemotherapy. What really matters is our senses, our body. So much of it is about loving our time through the senses.

The kitchen is one of the most important rooms at the hospice. It’s a little odd considering so many of our residents can't eat, but we realize we're providing sustenance on so many levels, especially smell. Sometimes, the most basic things, like baking cookies, are the best interventions we can give. As long as we have our senses, we can access what makes us feel human. This is a critical consideration when we think about people with dementia. We have to focus on things that make us feel present, without need for a past or a future. So, that's why tending to dignity through our senses is our second design cue.

And finally, our third cue: we need to aim at *well-being*, to create a life that's more wonderful, instead of just less horrible. To make things better for people. That's really the heart of a patient-centered model of care. We need to start looking at caring as a creative and even playful act. "Play" might seem like an odd word here, but it’s one of our highest forms of adaptation. Think about food. Food is an essential part of survival, yet, we've created cuisine. We need shelter, so we created architecture. We needed to be covered, so we created fashion. Dying is part of life, so what can we create with that? It’s not that we should approach dying lightly, it’s about making room for life to play itself out until the end. We cannot solve death, but we can design towards it.

Parts of me died a long time ago, and I've rebuilt my life around this fact. It was actually quite liberating to know that we can always find beauty in what we have left, like a melting snowball that has a moment of perfection. If we love those moments fiercely, we might learn how to live well, because of death, not in spite of it. Let death take us, but not a lack of imagination.

Thank you.