What Writing My Advance Directive Taught Me About Death In America

It turns out that telling people to kill you is harder than you think.
Publish date:
October 19, 2015
death, hospitals, dying, medical emergencies

"So," I said offhandedly to my friend T in chat the other day, "are you cool with me listing you as an alternate on my advance directive so you can tell the hospital to kill me if they can't track down my dad?"

Tristan and I have been friends for 16 years, and these kinds of flippantly morbid exchanges are not uncommon. (See: The Schrödinger's cat joke when I had to drive to Ukiah with a dead cat in a box or the time we fought a pool noodle war with colanders on our heads after his grandfather passed away and we didn't really know what else to do, among many, many other things.) We have a tendency to deflect really terrible things with dark humor, because escapism is a traditional American pastime.

But actually, advance directives are pretty serious things, and many people don't think to fill them out. Especially people our age, many of whom are healthy and think that the need for an advance directive isn't very pressing. Of course, anyone could be in a major accident, could have a stroke, could be otherwise incapacitated, and if no one knows what that person wants — or if family members disagree — the result can be a tangled and emotionally messy situation.

I'm at a conference as I write. This is my fourth year at Sirens — in my first, my father had a heart attack, but told the hospital not to call me "because he didn't want to disturb me." He ended up needing extensive surgery followed by rehabilitation, and while I was on panels about gender in fantasy and eating dinner with friends, he was waiting alone in the cardiac ward for the surgeon to arrive and meet with him before he was sent to the OR.

Fortunately my father was capable of making his own medical decisions, but what if he hadn't been? What if the hospital had no way of contacting me and no way of knowing how he'd want the situation handled because he didn't have a advance directive and my contact information wasn't readily available?

I've been harping after my father to set up an advance directive for years, even though he claims he doesn't need one because I already know what he wants in the event he's not able to make decisions. Which is true, but I might not always be there. And if he doesn't have a clearly designated alternate agent, he might end up with a decisionmaker who doesn't know what he wants, or doesn't care what he wants and makes decisions he disagrees with.

In retrospect, my father said when I visited him in the cardiac ward after he spent four days on a ventilator, he wasn't sure he'd have consented to the surgery if he'd known what was involved.

Advance directives are designed to get you to start thinking about these questions.

After years of hypocritically hassling my father about his lack of advance directive, I finally filled out my own recently — in part because I'm going into surgery in November and while it's highly unlikely that there will be any complications, there's always a risk. So I wanted to make sure that the hospital had clear documentation about my wishes with contact information for my agent (my father) and my alternate (T). And it sparked some interesting conversations for me.

America is a culture terrified of death, which is something I've written about and explored extensively. When I was growing up in Greece, the landscape of death was fundamentally different there — so different that the way Americans approach death was a bit of a culture shock. On Lesbos, most people died at home and were laid out there for several days for people to visit, before being carried to the cemetery and laid to rest — complete with professional mourners if there weren't enough family members to wail and tear their clothes to an appropriate degree. Periodically, bones were exhumed to make space in the cemetery (hey, it was a small island) and they were stored in boxes in the ossuary (when Christians were expelled from Turkey, many carried the bones of their relatives with them, fearing what might happen if they left them behind, and many Greeks have their bones sent home for burial). Tradition had it that if your bones weren't clean by the time they were exhumed, you'd lived a sinful life.

I came from a world that embraced and faced death — kissing the mummified feet of dead saints, sitting in a living room with the deceased laid out — to a country where death took place in sanitized, hushed hospitals, the deceased whisked away to a funeral home, embalmed and primped for a brief visitation followed by interment and cremation. The two approaches to death were like a whiplash, and it's only in recent years that the rise of the alternative death movement has begun to create a different image of what death might look like: Dying at home, being cared for by your own family.

A few months ago, I went to the funeral of a friend who had died at home surrounded by friends, her dog sitting on the quilt at her feet. We laid her out with flowers for several days and when we were ready, we moved her into a wicker coffin, brought her to the cemetery in the back of a pickup, and buried her. Some people were horrified and weirded out when I told this story — you touched a dead person? You carried a body in the back of a Toyota like couple bales of hay?

But it's the form of death I'm most familiar, and the one I want for myself.

As it turns out, though, talking about that can be surprisingly difficult.

My advance directive is fairly straightforward: If I'm unable to make medical decisions for myself and I have a good chance of survival with a decent quality of life, I would like to receive reasonable medical care to keep me alive. If I am unable to recover, or would be left in a persistent vegetative state, I don't want extraordinary lengths, because there are better ways to use those resources, and because, bluntly, that doesn't sound like a very good quality of life, for me personally.

Within those categories, though, there's a lot of nuance (one reason I checked the box indicating that I wanted my agents to use their best judgment, rather than being rigidly bound to the terms of my advance directive). And I had to sit down to have a serious conversation with both of my agents — both of whom had to absorb the fact that they might at some point be called upon to make decisions that would kill me. Which isn't an easy conversation to have, especially since my father was forced to realize that my wishes for myself are a little different than his for himself, decisions that he might have made on my behalf with a lack of advance guidance.

While extensive discussions about disposition of the body aren't included in the regular advance directive, I used Kaiser's paperwork, which includes some additional pages to get more specific. (FYI, that link is to Kaiser California, and you'll need to search for advance directives in your own state to make sure the paperwork is valid.) Ultimately, I told both my father and T, they were welcome to donate my organs or dedicate my body to research if they felt so inclined and someone thought my corpse might be useful.

One thing I definitely don't want, however, is handling at a funeral home — which forced me to discuss the details of handling a home funeral and transport to a crematorium or cemetery. Louise's pal Caitlin over at Undertaking LA provides help with that sort of thing, but unfortunately, she's a little far from me — but the site does provide some helpful info that I pointed them to, as handling your own dead is completely legal in California and will hopefully remain so.

These are things that make people very uncomfortable — while I've been vociferous and detailed about how I want my body handled after death in the past, I think it hadn't really sunk home to my father than I wasn't kidding around. Aside from the fact that the thought of being handled by strangers gives me the heebie jeebies, modern American funerals are extremely expensive, and I'd rather people use the funds to throw a good party or some other productive activity. I like the thought of my friends getting a chance to hang out with me for a little while after I die, rather than having my body hastened away like a time bomb. I like the thought of someone I know building a coffin for me, and people drawing or painting on it, or of people wrapping me in a shroud, if that's how they want to roll. I like the thought of being buried under a rock in a green cemetery — though I confess, I aspire to being burned in a pyre on the beach, my bones calcining in the gathering twilight while people play music and drink good beer. (For some reason, my landlord was very intent recently on alerting me to the fact that it only takes about a cord of wood to burn a body.)

The house I'll go back to when I return to California after this conference was built in 1973 by an artist who used entirely salvaged materials, mostly redwood, and sold it to my landlords when they moved up from San Francisco in the heady era when property was cheap and adventures could be had; at dinner a while back, they dug out a box of old photos showing them smiling, posing with the Jersey cow they got shortly after they moved. The whole property is filled with little hints of him; the sketchy old chicken coop that still houses a flock, a few of his art pieces hanging on their walls, and, of course, the house I live in.

The windows are from the old pharmacy, the walls uneven redwood paneling, the floors scavenged cardboard. It's a warmly familiar and comforting place. My landlords have made few updates over the years — why fix what isn't broken. We knew Olaf, the man who built my house, throughout my youth, which made it sort of oddly circular that I ended up in a house he built, and have every intention of living in until the day I die and am carried out in my coffin. I have lots of fond memories of visiting him in the various strange structures he built and sold, of loud dinners and band practices and arguments.

I still remember when he passed, too — I was in college, and my father called to let me know. They'd laid him out in his living room while someone built a pine box and then they carried him through town with a band playing and dropped him off at the crematorium. It's what he wanted, my father explained, and when I tried to articulate how I wanted to die, and be buried, I finally figured out how to make it connect: "I want you to treat me like Olaf," I said, and my father nodded. I'd found the way to make my advance directive familiar, comfortable, accessible.

The crematorium happens to sit in the graveyard directly across the ravine from my house, and sometimes I see a column of smoke rising through the trees, and I think: "I wonder who that was."

Image credit: Orin Zebest / CC