Advance directives – do you know what you’re signing up for?

Discussion of advance directives has popped up on my radar a lot lately. Could be my age (almost 45, which I optimistically consider the half-way mark) or my field of study (bioethics). Or, it could be that the need is finally recognized by the public, thanks in part to media coverage of end-of-life-gone-horribly-wrong stories.  Sad tales abound: a lifeless teenager on useless life-support; an essentially-dead pregnant woman forced to gestate a fetus against her husband’s wishes; a Canadian woman leaves home and country in order to ‘die with dignity’.  Who of us would want to go out like that…?

These are heart-wrenching stories that remind us that in death, there are many competing interests outside of our own. Our own preferences may get lost in the muddle. It’s a good idea to document your wishes (regarding intervention) before facing a traumatic life-threatening medical situation.  I fully support this in theory, but I also wonder if maybe we’re going about it wrong. How empowered in the process are we really?

My partner and I recently signed a collection of legal documents, including our Living Wills. We had the usual things to deal with, such as who gets what in the case of a family catastrophe. This required us to imagine horrific unnamed events that take out family members one by one – but with some discussion we got through most of it with confidence. Until we got to the Living Will.

Our lawyer, with her signature calm and kindness, gently pushed a document towards us. “This is our suggested wording,” she said, “but feel free to change it to suit your needs.”

It was a short document with a few simple statements meant to capture our presumed intentions:

“Procedures that only prolong the dying process shall be withheld or withdrawn if I have an incurable or irreversible injury or disease […]. I want to be permitted to die naturally with only the administration of medication and the sustenance and the performance of any medical procedure deemed necessary by my attending physician to provide me with comfort care.  I do not want my life prolonged, nor life-sustaining treatment provided or continued if my family or physician believes that the burdens of treatment outweigh the expected benefits. I want my family or physician to consider the relief of suffering, the expense involved, and the quality as well as the possible extension of my life in making decisions concerning life-sustaining treatment.”

Sounds reasonable, yes? The wording was so lovingly and thoughtfully crafted I almost didn’t notice the nudge towards a sooner-than-later death, enclosed within. As I read through the sentences I felt hot in the face, started to become agitated. My mind vaulted to the future, where I saw myself on a hospital bed, gasping for air, while my doctor and family discussed my suffering and expense.  All I could think was “Screw that! Crash cart, stat!”  I was mortified at the thought of not fighting for my life to the bitter end.

Apparently, this is not a popular sentiment. Our lawyer did a good job containing her surprise at my reaction, but not without telling me that no client, presumably out of hundreds, had ever changed the wording before.  The “I don’t want to be a burden” tone obviously resonates with people.

As medical and scientific innovation sustain bodies far beyond their natural limits, it makes sense that the advance directive would be a good tool to individually moderate what will happen to us. The default stance of healthcare is to pursue aggressive interventions; it’s up to us to decide whether we want them or not.  I am certainly not arguing against the need for advance directives, nor do I judge others’ personal decisions.

But, this experience has given me pause about the intention of the advance directive and makes me wonder if it’s been corrupted for a broader agenda. Is it possible the advance directive has become a ‘death-with-dignity’ vehicle that eases the way not towards autonomy and choice, but towards a particular choice?  Has it become a subtly coercive tool to push us towards a socially and economically appealing reduction in disability and vulnerability?

Maybe the advance directive conversation we had was exactly what it was designed to be – it got us to think about difficult things and make difficult decisions. But, in considering this one document, I was also reminded, yet again, how society encourages individuals to be self-sufficient, to be less of a burden, to conveniently self-destruct before someone else is given the messy task of taking care of us.  The encouragement is so strong, in fact, we may have internalized the message and convinced ourselves it’s what we desire.

By all means, if you haven’t already, make a Living Will. Just make sure it’s what you really want, not what you’re told to want.

A version of this post was submitted as one of several weekly assignments for my Policy Practicum class, as part of my studies at The Bioethics Program of Union Graduate College and the Icahn School of Medicine at Mount Sinai. This particular assignment was to write an op-ed.