Thinking about the Unthinkable

July 12th, 2011 by Larry Gallagher

Filling out an Advance Health Care Directive raises difficult questions, but it can also bring a sense of relief.

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For seven years I played music at a hospital in Berkeley. The ward was classified as Pulmonary Sub-Acute; everyone there needed some kind of breathing assistance, just short of a respirator. Different afflictions landed patients there: emphysema, stroke, ALS, childbirth catastrophes, head trauma from car and motorcycle accidents, and more. Every month, alone or with collaborators, I made the trip with my guitar to play and sing for the residents, who varied widely in consciousness from fully alert to – as far as anyone could tell – fully lost.

This last category of tragedy haunted me the most. One patient, whom I’ll call Ali, had been in a semi-vegetative state since the early 1990s when, as a medical school student, a car accident severely damaged his brain. Ansel was a different heartbreak – fully embraced by multiple sclerosis, he was down to the movement of his eyelids for communication. Before his illness, Ansel had been a professional photographer; across the hall from his room hung one of his images, a wicked irony that made me grimace every time I saw it.

Every month I asked myself: How had these people become trapped in this fix, and how could I avoid a similar fate? The answer to the first question, I learned, was that tragedy had struck quickly, before the individuals had even considered a contingency plan. When someone lingers for years, it’s often because the family is torn about what to do, leaving the patient and doctors caught in the middle.

The answer to the second question – how could I avoid a similar situation? – I found in a document called an Advance Health Care Directive (AHCD), which spells out the author’s preferences for the end of his or her life. An AHCD needs no specific format to be legally binding, nor does it even require the services of a lawyer. What it does do is allow me to specify certain end-of-life choices, and designates a proxy to help see that my wishes are carried out.

Despite the monthly reminder at the hospital, it took me a few years to overcome inertia and set the process in motion. An informal survey of friends revealed that I was not alone in this regard; my wife was the only person I knew who had actually put together an AHCD. To help me get started I made a call to Sue Rubin, a healthcare ethics consultant who operates The Ethics Practice out of Oakland, California. Among many areas of expertise, Rubin coaches groups and individuals alike on end-of-life issues. The first thing she impressed upon me was that this was not something I should put off until I decided I was “old.” 

“Most of the patients you saw at the hospital were injured when they were young and healthy,” Rubin said. Moreover, it’s often the young victims around whom end-of-life decisions are the most excruciating, and for whom the possibility of a long time in limbo is most likely.

The first step in the process, Rubin said, was to begin to educate myself. She pointed me to a number of online resources. One organization, called Compassion & Choices, offers an information packet called “The Good to Go Resource Guide and Checklist” that articulates many of the key end-of-life issues and questions. The next step, Rubin and other experts say, is to have the big talk with relevant family. “For me, the Advance Directive form is the icing on the cake. Sure, it’s great to have. But I’m less concerned with the form than I am with making sure we have the right kind of conversations with our loved ones.”

Personally, that meant sitting down with my wife and going through the scenarios. Coma. Dementia. Brain Damage. Paralysis. As a scaffolding, we worked from a document called “Five Wishes," printed by the nonprofit group Aging with Dignity, that guides the conversation into five categories under questions such as: If you’re incapacitated, who do you want to make the medical decisions for you? What kind of medical treatment do you – and don’t you – want? How comfortable do you want to be as the end approaches?

Over a period of weeks, we grappled together with the most profound questions. What would I need for life to still be worthwhile – and what could I do without? Would I want painkillers at the end, even if it meant a loss of mental clarity? What if I was “locked in,” unable to communicate my desires? The scenarios weren’t easy to contemplate, and to give absolute answers to such huge questions seemed nearly impossible. Yet it was strangely refreshing to confront them. Getting the conversation into the open allowed my wife and I to deepen our understanding of one another, and we felt even closer than we had when, many years ago, we’d sat down to write our wedding vows.

All that was left was the paperwork. I typed out my end-of-life directive, following the “Five Wishes” worksheet I’d filled out. In California, as in 45 other states, an Advanced Health Care Directive doesn’t need to be notarized; just two people need be present when it’s signed. I took mine to a dinner party and made it official over cocktails.

Somewhere in the process it occurred to me that no matter how specific I would try to be in anticipating every possible scenario, the choices that my health care proxy would have to make would still be tough ones, so I needn’t wait until my directive is perfect before I commit to it. Rubin agrees: “We have to give up the idea that we can perfectly predict what horrible thing might happen to us and that we can control it. Real life doesn’t look like that.” In her own directive, Rubin says, she specifically gives her proxy permission to make mistakes. “Who’s going to get it exactly right? I would rather have someone who knows me and loves me make mistakes than some stranger.”

In the meantime, if I change my mind about anything, I can just rip up the old documents and write new ones; with time and insight, I’ll undoubtedly want to refine my wishes. For now I’ve taken the first, critical step. If it doesn’t exactly bring joy, it does bring a modicum of relief. And where these dark issues are concerned, all relief is welcome. 

Larry Gallagher has written for The New York Times Magazine, Outside, Discover, and other publications; he lives in San Francisco.