Medical reporter Charles Ornstein writes about the agonies and indecisions surrounding his mother's end-of-life-care and passing. In my own case, I was quite prepared to make the critical decision and indeed, was standing by and thinking it was imminent on several occasions. And the reason I was prepared was that my mother had explicitly told me, over and over, that she didn't want to be kept alive on a technicality. One way she said it was, "If all I'm able to do is breathe, I don't want to be breathing."
That helped me know what to do. So did a conversation I stumbled into one day with my own doctor, a very wise man and not just about things of a medical nature. He said, approximately…
I've seen it time and again. The patient's case is hopeless. They have zero chance of living anything other than a life in a nursing home strapped to a machine, barely or wholly unaware of where they are. They've made it very clear that they don't want to be kept "alive" that way and all the proper forms have been signed that give the Loved One the power to say, "Discontinue treatment."
But the Loved One doesn't do that. They think they're overriding the patient's wishes out of love for them but actually they're putting their own wishes ahead of the patient's. They're afraid that they won't be able to live with the decision or that others will criticize them for killing their mother or father. If they stand to inherit a lot of money, they worry that the police will start investigating. Often, they're emotionally unable to deal with the medical realities and they insist, "No, no, I have a hunch" or sometimes it's a message from God or a belief that ending a life, even the kind of life the patient didn't want, is murder. There are also some people who just plain have trouble making any kind of important decision in their lives and this one seems too important for them to make.
So they ignore the realities and the patient's wishes and they tell themselves they're doing so "for them." But they're actually doing it for themselves.
Mr. Ornstein's article has a lot to do with the costs of keeping people arguably alive past the point of hopelessness…and that is a concern. My father, when he had his penultimate heart attack, was worried sick (let's say "worried sicker") about what taking care of him would do to his wife, personally and financially. He'd had to witness what happened with a pair of neighbors who I think I've written about here at some point. They were as nice and ideal a couple as you could ever find but when the man went utterly senile, taking care of him pretty much wiped out the family savings and the physical labor and exertion pretty much killed his beloved spouse. My father thought, as did we all: What a horrifying thing to do to the person you love most in the world…to essentially make them destroy their life taking care of you when you oughta be dead. I will always believe my father to some extent willed himself to die rather than do the same thing to my mother.
He was not so much worried about the cost of hospitalization. He had great insurance…a plan so good you couldn't get it today. He just thought what a pain it would be to take care of him when he couldn't take care of himself, and how expensive it would be to hire caregivers, remodel the house to accommodate his new needs, etc. I don't think he could possibly have gotten any better if he'd felt it was at the expense of his wife's health and monetary security.
Some of you may remember the Terri Schiavo matter of not long ago. A lot of those who thought the most important issue in the nation was to keep that woman alive — even ignoring others in similar or more "saveable" conditions — would like to forget it. What struck me at the time was how little the controversy had to do with Ms. Schiavo; how she'd merely become a prop in whatever remained of her alleged life. It was all about what was good for those around her, either in terms of their own lives or in how they could use her to demagogue some issue.
I suppose I was fortunate that I didn't have to make The Ultimate Decision, though I came close and was quite prepared. I'd decided that it was too simple to just say, "It's not about me. It's about what she wants." It wasn't even, "It's not about me. It's about what she wants, assuming I'm satisfied she would still want it when she's unable to rescind that wish." It was, I came to believe, at least a little about me in that what she least wanted (and would have hated more than anything) was to be a crippling burden on my life. She had reached the stage where she didn't want to live and felt that having birthed and reared me, she was now a destructive presence in my life and ashamed to be that. I have the feeling that when she realized she was dying, among her last thoughts was, "Good. Now, Mark won't have to tell them to turn off the machines." That's a great mother for you.