Last week, I talked about getting some health-related doctor’s visits checked off the list. Hitting the road and losing a decent health plan through my employer provided the motivation. I continue to be amazed how motivational this life change has turned out to be, especially in areas of my life that have nothing to do with money or travel. Writing a medical directive falls squarely into this category.
Completing a medical directive has been on my “to do” list for a dozen years. I’ve felt so strongly about it, many of those years it rose high enough on the priority list to the elevated status of New Year’s Resolution.
Year after year it went undone. Even recalling the news stories and photos of Terri Schiavo and the 15 years she lived in a irreversible vegetative state while her husband and parents battled out life support care wasn’t enough to get me to fill out the paperwork.
Wondering why this post is in the Finances category? Imagine the cost of keeping someone on life support for 15 years. I cannot even imagine the cost for a month, probably near the amount I am putting into my dream. And that took me 20 years of scrimping and coupons-cutting to save.
In brief, Terri Schiavo collapsed in her home in 1990 at the age of 26. Medical professionals were able to bring her back but the damage to her brain from lack of oxygen was extensive. The autopsy would show her brain was so damaged it weighed only half of what a normal brain should weigh.
Since she was without either a will or a medical directive and her parents and husband disagreed on treatment, they spent the better part of 15 years in court. In 2005, her husband ultimately prevailed and her feeding tube was removed. She died a week later.
The nonprofit, Aging with Dignity, that created 5 Wishes, a medical directive many people have used to help guide them through writing one, made a killing in 2005. I was one of thousands (I’m sure) who bought their little booklet, determined not to put my family through what Schiavo’s endured. Financially or emotionally.
More Than Procrastination
I fully admit to being a procrastinator with the best of ’em.
But I wouldn’t exactly say that not writing the medical directive was due to procrastination.
I’d pull out 5 Wishes once or twice a year determined to get it done. I’d read the booklet and just freeze when trying to answer some of the questions. Just freeze. An hour or so later, I’d refile the booklet until the next time I pulled it out with the same fierce determination.
The truth is: it’s hard to think about dying. It’s even harder to think about dying ugly. Most of us, I imagine, want to go fast and peaceful. Maybe in our sleep in old age. Or if you have to go young, then in a car accident or plane crash so severe and final there is little time for fear or pain.
The 5 Wishes booklet and questionnaire asks you to consider scenarios where death isn’t easy or obvious.
Choosing a Health Care Agent
My immediate family is small. Really small. Two people. My dad and my sister. And while, for the longest time, they were the only two I considered as my health care agent (the person who I put in charge of my care if I cannot communicate the care I want or don’t want) despite a belief that neither would do a good job. Or at least not the job I’d want them to do.
My uber practical no-nonsense dad would pull the plug in the first hour, before I’d even been declared brain dead. Despite medical training, my nurse sister has no rational thought when it comes to people she loves. When it comes down to it, I know she simply would not be able to pull the plug. It’s just not who she is.
In hindsight, I can also see that maybe immediate family isn’t the best anyway. In a worse-case scenario, they deserve to not be further burdened. Grieving the situation and potential loss of a loved one is enough to endure without the added burden of making the most difficult of decisions.
When I pulled out 5 Wishes earlier this year, it finally occurred to me to ask someone who wasn’t immediate family. I asked my cousin. She was the balance I needed—someone who loved me and wouldn’t want me to die but someone who could make the tough call if it was needed.
I asked her before I wrote her as the first choice for my health care agent. That would be a terrible surprise to spring on someone. I also told my dad and my sister that they weren’t my first choice. I wasn’t sure how either would respond but both were fine with it. Maybe it was a relief to them.
Talk to Others
In the midst of completing the form, I told a friend of mine how ridiculous I thought one of the questions was. It was a multi-layered question, but included whether or not I wanted photos of loved ones in the room if I was incapacitated.
What the heck do I care? I told my friend. If I’m not awake to see them, photos in the room just seemed silly.
She said the photos would not be for me. The photos would be for the people providing my care. Unconsciously, having photos in the room tells the health care worker that someone is watching. A person with photos in the room actually gets better, more compassionate, care than a person without.
It reminded me of cereal boxes. Did you know that the sugary cereal characters on the front of the box are almost always looking slightly downward? The reason? The characters aren’t meant to catch the eye of the purchaser. They are meant to catch the eye of the kids who influence the purchaser.
If I wouldn’t have shared my difficulties and the fact I was working on a medical directive with my friend, I never would have known about what an importation role photos in the room can play. You never know what bits of insight others might offer as you write a medical directive, especially if you struggle with yours as much I as struggled with mine.
Friends can also help by by holding onto a copy of the medical directive for you. Having one won’t do a bit of good if no one knows about it or can find it if it’s needed. In addition to my cousin, dad and sister, I sent my completed form to two close friends.
None of us want to be in Terri Schiavo’s place. Or her husband’s. Or her parents’. If you have a medical directive, make sure it’s up to date with your current wishes. If you don’t, seriously consider writing one. Don’t take after me. Good intentions are not a legal state of being.
And, if you use 5 Wishes, note that the document alone is not sufficient in eight states. In other words, I will do my best not to end up incapacitated in Alabama, Indiana, Kansas, New Hampshire, Ohio, Oregon, Texas or Utah.
As I understand it, most of those states have a simple additional form that combined with 5 Wishes will suffice. So, I guess after all this, I’m not really done with my medical directive. Once I’m on the road, I’ve added to the “to do” list to research and complete the additional paperwork for those states.
Would love your thoughts on having a medical directive and how you felt creating one. Did you struggle as much as I did? If you don’t have one, why are you avoiding writing one? From the person who took 12 years to write hers, I will not judge.