Wednesday, June 26, 2013

Experience Cancer Through a Video Game

(Today we have our first post from Meredith MacMartin (@GraniteDoc), a palliative care doctor in New Hamsphire, who referenced this video game in a Tweetchat several weeks back. I'm pleased to welcome her to Pallimed and I know you will enjoy this thought provoking post. ~ Sinclair)

My brother-in-law Dennis is seriously into video games. He’s a designer and programmer who has worked with NASA on using video game technology for training and community outreach purposes, and who is passionate about expanding the use of gaming for entertainment and especially education. I’ve had many conversations with him about this, but always came away thinking something along the lines of “My work is with people, and you can’t translate interpersonal dynamics into a game”.

I just couldn’t see how gaming could have any application in the palliative care world, which grapples not only with strong emotions but also with high-level decision making that is deeply personal and specific to each patient, family, and illness. How could a video game create anything like my daily work experience?

And then I read this article about That Dragon, Cancer. This is a video game currently in development, describes on its website as:
... an adventure game that acts as a living painting; a poem; an interactive retelling of Ryan and Amy Green’s experience raising their son Joel, a 4-year-old currently fighting his third year of terminal cancer. Players relive memories, share heartache, and discover the overwhelming hope that can be found in the face of death.
The review written by Jenn Frank (@Jennatar) at Unwinnable is itself a wonderful piece of writing. And it described a scenario utterly familiar to me, which was itself disconcerting. The section of the game she describes takes place in the ICU. You, the player, are there with your young son. She writes:
“And wow, you really got every detail right! I can’t believe it! There’s the armchair. And it is! It is always too small! And rubbery. Here’s the phone right next to it, of course. The bed is over there. The bathroom is a room attached to this one, and then there’s another sink counter way over here, where you religiously wash and sanitize your hands. There’s the salmon-pink, kidney-shaped basin sitting on the counter just to the sink’s left: maybe it’s supposed to be a bedpan, but we always used it for vomit instead. Everything is just right, just the way I remember it.
And then there are those great big windows – there are always those great big windows – and if it weren’t for those big picture windows, you’d never know the time of day, since the ICU is always so dark. That moment really struck me, seeing out those windows and realizing it’s still daylight.”


This could be my ICU, where I have spent many hours (daylight and otherwise) in front of those plate glass windows, both as a resident making frantic adjustments to drips and vent settings, and as a palliator working to be the only non-frantic entity in the room. Her description of the physical setting makes me catch my breath: what else did the game designers capture? Jenn Frank, the reviewer of the game, goes on:
“The very first time, my mother was supposed to die. She was supposed to die, and we succeeded instead. She survived several times after. For just under a year I was needlessly cavalier. I do remember what it felt like to be the hero. I also remember what it felt like to get so, so tired, which was a long time after I’d stopped being afraid.”
This stops me in my tracks. What she describes is likely immediately familiar to all of us working in this field: the false hope of “success”, the fatigue, the fear. The creator Ryan Green (@RyanGreen8) describes the game as primarily about hope, something that seems so slippery to me in the ICU. I start thinking about the audience for this game. It has always seemed to me that the caregiver experience in the ICU must be excruciating regardless of the outcome; who would want to relive that? 

But then it occurs to me that perhaps the real value of That Dragon, Cancer is not for those who have survived the dragon, but those who have yet to face it. Or those who have just learned of the existence of the dragon in their own life. If you could prepare yourself for the hardest thing you will ever go through, if you could practice it by experiencing a fraction of it ahead of time, would you want to? Would it help?

***

A few weeks ago, I sat in the conference room of our ICU, across from a family whose mother was dying in the room next door. They were weighing whether to continue aggressive treatment or to withdraw life support and allow a natural death. The patient’s daughter and DPOA said tearfully “I think I know what my mother would want, but I’ve never had to make this kind of decision before. It’s not like you get to practice these things.”

In that moment, I couldn’t help but think of the video game, of the artificial ICU in the game and the emotions it was able to evoke in one who had experienced the real thing. And I couldn’t help but think, what if this family had practiced this hardest thing before? Would it have helped? I don’t know the answer, but it has shown me that perhaps interpersonal dynamics are more translatable to a virtual reality than I had supposed. What other digital tools might be out there waiting for us?



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