Death. Dying. Design.

What I Learned Watching My Mother Die.

This morning I was trying to remember the exact date my mother died, and I suddenly started to feel like the opening line from Albert Camus’ L’Etranger, which I hadn’t read since eighth grade or thought of since.

“Aujourd’hui, maman est morte. Ou peut-etre hier, je ne sais pas.”

It was about a month ago, though in some ways I can’t actually think in terms of weeks or days. But unlike Meursault, there’s no apathy here, no lack of empathy. I was there when she died. I helped my father undress her body out of her pajamas and into her favorite sundress. I sat and held her hand until the warmth slipped entirely out the length of her fingertips.

And then I stood up, got into bed, and fell asleep for about 18 hours straight.

I don’t think there is a universal experience of grief, as universal as grief is. And I definitely don’t believe there are five stages, although if they do exist there is no way they are linear. Because I think I almost accepted my mother’s death from the moment she was diagnosed with terminal cancer, in spite of it coming without warning. But that won’t stop me from bargaining. Or being angry. I skipped denial altogether. And depression just feels like the wrong word to describe the quality of the sadness you feel.

At IDEO, we work on a ton of health-care projects, and talk a whole lot about the human experience, of putting patients in the center. Going into this, I already knew intellectually, at least, so much about what is broken in healthcare. But to actually experience it first hand, in a visceral way, is a pretty amazing thing.

In my case, the biggest cracks lay in the smallest interactions. For instance, in the final days of her life, it wasn’t clear to my father, sister, or me whether we should be trying to get her to drink. The hospice nurses who came by our house had already removed her IV, but instructed us to regularly try and tip little sips of water into her semi-opened mouth. When she lost the ability to swallow, we still kept at it, because they had implied it would help relieve suffering.

One afternoon, just a day or two before she died, she began choking on the water we gave her. It went on for what seemed like forever - being too weak to swallow also meant she was similarly too weak to cough it out of her windpipe. When the nurse returned and my mother was still struggling, I angrily asked how giving her water was possibly relieving her suffering at this point. “Not her suffering,” she said. “Yours.”

That’s the thing with dying. The line between helping the person who is ill, and helping those who must deal with that person’s illness gets very blurry and very messy. There is miscommunication, there is confusion, and there are countless mishaps. These are the things that haunt me. This is what I want to design away, since I know there is little we can do for death. Death will come. But dying is filled with opportunities.

Considering that my mother was a non-smoker, was only sixty, and had done a two hour spin class the same morning she was diagnosed with inoperable stage 4 lung cancer made the news almost laughably implausible. When I went online to look at the statistics (note: never, ever do that), it became clear that people just do not survive this. But the statistics themselves - 15% survival rate after one year - were infuriating. Most lung cancer patients are smokers. They are men. They are 75. No one could tell me how that bell curve fell for young, active women. Couldn’t I game the system? Couldn’t they at least let me try? How could such a stark number be simultaneously so entirely devoid of meaning, and yet remain the only thing we could cling to?

That was my biggest insight from the whole thing. It was the little moments that I tripped on the most. Not the big ones.

In the end, my mother is gone; profoundly, unmistakably gone in a way that still takes my breath away when I say those words out loud. I can write about her already, which is itself a surprise. I can’t listen to her old albums. And I can’t wear her watch. And I cannot look at photos. Those things will come, I assume, but not for a while.

But I sure as hell can help design better ways to die, to enable dying, and to support those that need to watch it happen. Because that is the stage of grief I find myself trapped in now. Not sure what to call it. Revenge?