The subject of “death with dignity” came up around here a little bit ago. Depending upon your point of view, it’s called
- Death with dignity
- Assisted suicide
- Doctor-prescribed death
- End of life choice
- Right to die
- Going against God’s will
I’m in reasonably good mental and physical health, so I can’t speak to this issue from personal experience; but I can tell you (at some length, I’m afraid) about my father.
My father died recently on what would have been his 91st birthday. I’m not going to repeat all of the wonderful things that were said about him, because nice as they were they aren’t important. What I will say, and with emphasis, is that my father was a dignified man. I don’t mean that he was stuffy, or a prig; I mean that he dressed neatly, always kept himself clean and well-groomed, and was a gentleman. He was also brilliant, college at 16 brilliant, and that’s important too.
About three years before his death, my father began to notice tiny lapses in his mental abilities. He mentioned to me that he had always been able to add a column of numbers in his head; but now he had to resort to a calculator. He started having trouble coming up with a word occasionally, but that isn’t unusual in a person approaching 90.
Some time after that he repeated his comment about needing a calculator, and added that sometimes he made mistakes even with one. He gradually started depending upon my mother to check his work, although he continued to manage their somewhat complicated investments, pay the bills, and generally take care of the financial side of their affairs as he always had.
The next sign of deterioration was when he seemed to have trouble finding things that were literally right in front of his nose. His ophthalmologist couldn’t find anything wrong with his eyes, but did a simple experiment. He placed three small items of different colors on a table in front of my father and asked him to pick them up, one at a time. My father had no trouble reaching for the one to his left, nor the one to his right; but he had trouble finding the one in the middle. The ophthalmologist said it was a neurological problem.
This, although we hadn’t heard about the condition at the time, was the onset of constructural apraxia. Constructural apraxia is an odd thing. Although it is often a precursor to dementia of different kinds, it isn’t always; nor do all dementia patients experience it. I already described the first symptom my father exhibited, but let me describe the standard field test: you draw a circle and ask the patient to draw the hands of a clock positioned at 10 and 2. My father couldn’t do it. He got frustrated, he got embarrassed, but he couldn’t do it.
Here’s a more practical example: you need a screwdriver, so you pick it up. You know the flat end goes into the head of the screw, and the handle end goes in your hand, but you can’t get it pointed in the right direction. As time went on, my father had trouble putting on a shirt because he couldn’t get his arms in the sleeves.
There was no deterioration of his mental acuity; he just couldn’t manage certain types of tasks. He could still read the Wall Street Journal, manage their investments, remember appointments, make intelligent decisions, and participate in life as fully as his bad knees and bad hearing allowed. He might have trouble putting on a shirt, but when he was done he looked just as neat and well-groomed as ever. He still had his dignity and his intelligence.
Of course the first thing that occurred to us was Alzheimer’s disease. He went to a geriatric specialist who tried him on first one medication, then another. They upset my father’s digestion, and he didn’t notice any positive effects, so he stopped taking them. Sobeit, we thought.
My father’s condition very slowly got worse. My mother and I, who saw him on a regular basis, were in denial; but others, who saw him less often, noticed the deterioration. It would be hard to describe exactly what was going on, but he was increasingly just not right.
My father, I think, was not in denial about his mental state. When it got to the point where you had to help him figure out which was the passenger side of the car he didn’t act surprised, or get defensive. He knew what was happening to him, but he didn’t get bitter or lash out.
Eventually it reached the point where my mother didn’t like to leave him alone for more than a few hours. She would go out for groceries, or to get her hair done, and he’d read until she got back. Nothing bad ever happened, but she didn’t feel right about it.
All this time we had no real diagnosis for his condition. It didn’t really seem like Alzheimer’s, but we didn’t know what it was. Then my mother went into the hospital for a hip replacement and things came crashing down — literally. My father had been heading for the bathroom and he’d fallen on his butt. We had arranged for an aide to check on him every couple of hours, and she found him on the floor.
He was never the same after that.
Within three days of falling, this man who had always been so well-groomed was missing spots when he shaved. His shirt wasn’t always tucked in properly. Then I literally saw him have a stroke. He stood up to go to the bathroom, and couldn’t move his legs. He was stuck, standing there. Then we knew for certain what some of his doctors had speculated: my father had been having tiny strokes for years. Bits of his brain had been dying, and now he’d lost the part that let him move his legs.
Fortunately I was there, and was able to get him into a wheelchair (which we had for times when he would have had to walk a long way). We arranged for 24×7 “awake” aides. My mother was home from rehab, but there was no way she could care for him. This dignified man now needed help going to the toilet. He was losing his ability to communicate. He could speak clearly at times, but sometimes had a slight slur. He could read, but not write. He could tell time with a digital clock, but still get confused about when it was time to eat dinner. He started talking to himself, saying “no,” or “wrong,” or “right.”
My personal opinion was, and still is, that he was double-checking his thoughts to make sure he got them “right.” He was still in there, thinking and trying to relate to the world outside his damaged brain. He would ask questions, as well as his aphasia let him, and he would understand the answers. He looked at me and asked “Marriage”? I stood there, trying to figure out what he was getting at, while he waited patiently. Then it came to me, and I responded “Janet (my wife) is fine.”
He nodded, and replied “Good.” Then he asked “Pregnant”? The answer he was looking for was “The kids are all doing well.” Again, he nodded and replied “Good.” He began asking me to write reminder notes for him, which he would read over and over again, trying to get a name, a place, a time to stick. His intelligence, his self, was still in there, trying to find ways to navigate around those wormy dead places that were growing and multiplying.
The nightmare really started galloping. My father might have trouble holding a conversation, but he would wake up in the middle of the night and beg my mother to kill him. She would tell him that she couldn’t, and he’d say he understood. But it happened over and over again. He asked me the same question, and I gave him the same answer.
Pretty much his last words to me were “It’s hard to check out.” I had no doubt what he meant. He stopped eating and drinking, and died a few days later. He had used the last of his dignity and intelligence to put himself out of his misery.
So where do I come down on this whole “death with dignity” issue? One of the arguments against it is that doctors or relatives would coerce the incompetent into leaving early, or that the merely depressed would ask for death when what they really needed was an antidepressant. I don’t know how likely that would be, but I’d bet it would be rare. The real arguments against it are either religious (God’s will) or a conviction that anyone who wants to die is ipso facto incompetent to make that decision.
An end of life directive, if executed well in advance, might help with that. My father didn’t have one, although if he’d lived in Oregon he might have drawn one up. His desire to die, as quickly as possible, was stated unequivocally over and over again; but was he competent to make that decision?
I believe he was. As I said, he was still in there. He had to make a horrible choice. No matter what the opponents of end of life choice might say, dying of starvation and dehydration can’t be fun. I suggest they try it for a week or two.
My father did have hospice care for his last few days, but was he comfortable? He didn’t seem to be. In my father’s case it was more mental discomfort that he suffered, and he remained unhappy and agitated until he lapsed into a coma. Is there such a thing as a dosage of morphine large enough to stop someone from thinking, which wouldn’t be considered a lethal (and hence illegal) dose?
I don’t know. I only know that my father wanted with all his heart, mind, and soul to die with dignity; and I don’t think he did. He lingered too long for that.
I’m sure that if it weren’t for the law, any one of his immediate family (including my mother) would have put him out of his misery. He paid the price for our cowardice and inhumanity.