I have talked about the importance of an advance directive before. It is the only way to exert control over some of the most important healthcare decisions of your life, even while you are incapacitated. Well, this week I finalized mine.
Considering all of the potentially life-threatening conditions I have, it is slightly criminal that I haven’t had one since I was 20, after an incident in which I was incapacitated by low blood sugar, inadvertently refused treatment at the 24-hour clinic, and my mom told me in no uncertain terms that we were never doing that again.
After procrastinating for so long, I was finally in a situation where I couldn’t delay. A year ago, my logical brain said that I should buy into my employer’s legal benefit plan, where you pay a monthly fee and get access to legal help for all sorts of issues for a smaller fee. Ironically, it works kind of like health insurance. I did that, and now I have until the end of 2020 until the benefit expires. I can’t renew it because I am no longer with that employer. As you can see, I am cutting it pretty short.
But I will make it. The last hiccup was always going to be that I needed to leave detailed instructions for specific situations, thereby relieving my representatives of the difficulty of making these decisions. They would just need to see that my wishes were carried out. But that meant spending a week or more thinking about my own death, which is literally the only topic that can send me into a full blown panic attack. With a few notable exceptions, I have successfully avoided thinking about it for most of my life, an unparalleled exercise in denial for someone who has been so close so often.
Now I had no choice. My sense of fiscal practicality – inherited from my mother – is stronger than my wish to not induce a panic attack. And if I didn’t do it now, I would just have to pay again to do it later. Dying intestate with heirs that are not my children is not a good idea.
So, I dug through my documents to find the grid that I kept from a medical ethics class 25 years ago. It had a list of specific situations and options, as well as phrasing that would allow me to state the general intent of the instructions for each situation, as well. It’s a bad photocopy of a too-big book, taped together and hard to read in some places, but still useful. It has been sitting in my files out of sight since my mom used it to help with my grandfather’s advance directive.
The first few were easy enough. If I am being kept alive by artificial means, there was no point in sticking around to see what happens. I’ve been in a coma before. I know the odds.
But the last few were hard to finish. They dealt with things like if I got something like Alzheimer’s, which runs in my family. (I called that the ridiculously bad luck situation.) Or if another fast-acting terminal condition intervened in my death by other chronic, longer lingering terminal conditions.
I stopped to cry a few times while I made the decisions and typed them up to be included in the larger document. It shouldn’t be a surprise that I turned on Sesame Street when I needed a break. Warm, simple, familiar Sesame Street. For three hours. And then I decided and typed up my directions for the last couple of situations and I was done.
Hopefully, I will never need them. My stuff is all physical right now. Yes, the diabetes could cause a coma, but not if I keep myself stable. It will be a while before having it done provides comfort. It might never, since acknowledging the documents means mentally treading toward that subject.
But that’s not the point.
The point is that the situations are all plausible, even in this age of advanced medical technology. If the worst does happen, I want my decisions to be carried out. And this is the only way to get what I want. It’s better this way.