Why Can't We Talk About Advance Directives Together?

I want to be opening the hard conversations now, while we still think we’re just young enough that all of this is just plain silly, because hey, guys? It isn’t silly, not really. We only get so many days.
Publish date:
February 11, 2014
multiple sclerosis, right to die

I would like to have a serious discussion with the people that I love about my personal advance directives, and assisted suicide -- as it could relate to me personally and in general. Unfortunately, this is not a conversation most of them want to have with me.

I get it, sort of. It’s uncomfortable. Most of us are somewhere between our late twenties to our mid- forties, and death, it still seems forever away. Dying just doesn’t seem like something we’re likely to do any time soon, but also: many of us have seen it happen to someone we love by this point in our lives, and it makes us feel like changing the subject.

We know it’s coming for us eventually, most of us have some image of what we think it looks like, and we don’t like that at all: maybe we could we talk about "Downton Abbey"? Just not the tail end of Season Two, that’s too depressing for words, honestly. NEXT SUBJECT, PLEASE.

The truth is that you never know what’s going to happen, though, and it’s important that the people around you know what your wishes are. Beyond just important, actually, even if your state won’t always listen to what you may want; having a clear idea of what you would have wanted in that moment helps simplify and clarify an already traumatizing, confusing time for the people who love you. If you’ve ever been in or near one of these situations, you know how much help advance directives can offer in these circumstances.

Part of the problem, possibly, is a lack of understanding. When I start to talk about “end of life” planning, there are certain terms that come up, and I’m not sure everyone knows exactly what they mean, because not everyone has gone to get them yet. (I feel as though once you’ve had that appointment it seems to stick with you for a while, but I could be wrong there. It stuck with me, but maybe it’s different for everyone.)

Advance directives are a set of legal documents that hopefully let you spell out how your end- of- life care will go under certain circumstances. A living will allows you dictate which treatments you will or will not allow should you become permanently unconscious or begin to die, such as breathing machines, feeding tubes, resuscitation, etc. An important thing to point out here: You can also state that you want every single measure possible used to maintain your life, and I think that gets missed, very frequently, when we talk about living wills.

A durable power of attorney (for health care) allows you to elect who can make medical decisions for you -- as your proxy -- if you aren’t able to do so for any reason. This one is a super-big deal for me; I feel like everyone should have one of these, because accidents happen, and you need someone who knows what you’d want making the decisions if you aren’t conscious.

For those of us with families with different belief structures or internal conflicts, it’s important to remember that if our partners were to die before we did, or die in an accident that put us in a hospital, the call to “next of kin” could be going to someone we really, really don’t want making those very important decisions -- unless we’ve made plans in advance, via a durable power of attorney.

There are other pieces you can add to advance directives, but these are the biggest and most frequently used. You can add in a DNR (Do Not Resuscitate, if that’s something you want/ need) or a notarized letter -- that’s in mine, although it needs updating, something I’m working on right now, actually.

A lawyer would be the best person to talk to about all of this, because advanced directive law varies from state to state, and if you move, it gets a little tricky; not every state recognizes living wills from other states, for example. Check with your state, and meeting with a lawyer is probably a good idea, too. Many law offices offer free initial consultations, and although you don’t always need a lawyer, getting the facts about the laws in your area can help you decide whether using an attorney is best for you.

About that notarized letter: It doesn’t mean jack, in case you were wondering. It’s got all the legal validity of a crayon note pinned to a wet cat. That was a suggestion from the lawyer who helped me write out my original will and advance directives when I was 21. The idea is that this is a separate, personal document, to be kept with my other legal papers, in which I’ve written out what I want, and loosely why, for the people I love to read if my advance directives are ever needed.

Legal documents are great, and they have their very specific uses, but they don’t always help the people left behind. Situations like these are already so hard. I want it to be absolutely and unambiguously clear that if hard choices are made, those choices were mine. No one walks away from a slow death without guilt, but I can take steps to try to help alleviate some of that.

This year I’m going to have these conversations with the people I love. It matters. I recognize that I’ve had more time than a lot of people to get comfortable here: the military, DoD work, becoming active in disabled and chronically ill circles, losing my favorite grandmother long and slow. Death is unhappily familiar to me.

I don’t want to force the subject on the people I love but I also need this off my plate. We’re grownups. Death is scary. We can still figure it out.

I could leave the subject alone, except I can’t. I’ve written about my MS diagnosis before, and I’m not going to get into it again except to say that the disease is progressive. I’m doing pretty well so far, and even better lately (I just switched over to one of the pills and I think that might have made a difference) but whenever you see me in the good times, that’s as good as you’ll ever see me, because this stupid disease, it will keep taking whatever it can get.

I could get totally lucky! I hope that’s the case. Many, many people with MS are lucky.

Some aren’t. That happens too. I was really upset about it when I was diagnosed, and I’m not going to pretend I’m all good with it now. I’m not OK with it. It scares me a lot, some days. Other days it’s a relief, having a solid idea of what my death could look like -- how many people get that? The thing is, there are “good” and “bad” ways MS can take you*, and I have opinions on that.

I have options, actually. And just as we now choose to look at birth in new ways, should I and my medical staff see that as I reach a more advanced age my disease intends to end my life in a way that I find unacceptable, I’d like to be able to close things out myself, surrounded by the people in my life who choose to be there.

I definitely don’t want death with dignity to be a surprise to anyone; I want the people in my life to know that’s in my toolbox in case I need it, (well, I guess the world knows now), and I’d like us to be able to talk about it now, long before it’s even a glimmer on the horizon. I want to know who to call, who not to call, who would want to be there, who wouldn’t want to know it was happening, all of it.

There’s a lot more to this conversation than just, Hey, about death with dignity, what do you think? What do you think about it… for me? It’s complicated; complicated when you make it personal, and so, so much more complicated when you make it personal and you are sick. I want to be opening the hard conversations now, while we still think we’re just young enough that all of this is just plain silly, because hey, guys? It isn’t silly, not really. We only get so many days.

I think the fix for me might be sealed envelopes, with photocopies of my advance directives and the new letter, as well as a note alongside, detailing how important this is to me and inviting them to discuss the contents within the calendar year. This way they’ll have everything, they can look it over when they are alone, and there’s a deadline. I expect I’ll probably end up doing several of these conversations in the last week of December, but that’s okay. None of us are any good at this: some of us just have a little more practice, that’s all.

Who else has done this? How has it gone? Any suggestions? I’m always up for a story.

* My doctor tells me MS doesn’t kill people, complications from MS kills people. I tend to view that as a very faint distinction, but you can make your own call.