The “assisted death” debate evokes a spectrum of strong emotions in most of us. Often, our opinion is largely based on witnessing, or at least hearing about, the sufferings of others at the end of their lives.
At least that is true of my own opinion on this subject. As a family physician for the past 31 years, I have walked this road with more patients and their families than I can remember.
Some of these “transitions” seem to happen relatively “easily,” if you know what I mean. Yes, there’s always some sadness, and the poignant finality of the occasion, but in some cases it seems that the death is timely, the family are prepared and the transition is relatively smooth.
But they are not all like that.
Although I have witnessed more of these occasions than I can remember, there are a few that I will never forget. I would like to share one real life (and death) experience with you, as it has certainly informed my opinion on the subject of assisted death.
I met Gerald (not his real name) in 2001 soon after he had immigrated to Canada to retire in our beautiful city. He had enjoyed a very successful professional career, and although he was making big changes in his occupation and living situation, he was still very youthful in his love for life, and was looking forward to a full and active life in Victoria.
He consulted me infrequently due to his good health, but I always enjoyed his “joie de vivre,” and we struck up a good rapport.
One day, I received a phone call from the ER doctor that Gerald had suffered a sudden collapse on the street, and was now in the ICU with what appeared to be a devastating stroke. It turned out that he had suffered a brainstem infarction, which effectively “disconnects” the brain from the rest of the body. Gerald’s ability to think and feel emotions, sensations and pain were unaffected, but he was unable to move anything at all, except his eyes.
Think about that for a moment: Feeling pain at a pressure point or feeling mucus pooling in the back of your throat and being unable to move, or even communicate your pain or fear. Totally dependent on machines to breathe for you and feed you, and on other people for bathing and toileting you.
We set up an alphabet board so we could laboriously point to each letter, and Gerald would blink at the letter he wanted and spell out a word. I remember sitting for the first time with some anticipation wondering what Gerald would want to say. Slowly, the words came: “p l e a s e k i l l m e.”
He stared straight at me, and the desperation and commitment were as clear as if he had shouted it from a rooftop. He would repeat this phrase at the start of every spelling-board conversation over the next few months. This would cut me to the heart each time, as I had to explain that there was nothing I could do except ensure the best medical care possible, and try to anticipate and alleviate any physical pain.
Slowly, over many months, Gerald’s condition stabilized and he could breathe on his own, with frequent suctioning. He was able to be transferred home with 24-hour care, and could use a computer with a controller in his mouth. He still could not talk, eat, drink or move any muscles apart from his eyes and now his lips.
Because he had 24-hour care, my visits became less frequent, and as the months went by, his communications became more positive. In fact, he started to write articles about his experiences, and communicate with friends by email.
One day, I summoned enough courage to ask him if he was glad to be alive. He answered: “Yes!” I then asked him if he was glad that I hadn’t killed him as he had asked me to all those times. He said: “Yes, very glad!” I think there was a little smile in his eyes, also.
Gerald went on to live a fulfilling life before succumbing to pneumonia a few years later.
With regard to the present debate on assisted death, it is clear that Gerald would qualify on every possible criterion for “death by doctor.” Yet that was not what Gerald ultimately wanted. What he ultimately wanted could not have been known by anyone (including himself) at the time, no matter how many doctors were consulted to agree with the decision.
The Holy Grail in medical ethics is “informed consent,” in that a person can give consent for any procedure on his person as long as he is fully informed. In truth, when we are dealing with issues affecting the rest of one’s life, no one is “fully informed” as to their future quality of life, or their future opinions and feelings.
This point is well illustrated by an article in the National Post, dated March 3, about Dr. Maurice Généreux. He had prescribed lethal doses of sodium seconal to two HIV-positive patients with a view to “assisting their deaths.” Aaron McGinn died, and Mark Jewitt lived.
Mark Jewitt subsequently received effective treatment and counselling, and 20 years later, according to the article: “He would have missed so much had he died.”
“I would have missed gay marriages. I would have missed AIDS becoming a manageable disease.” He was glad to be alive.
Possibly, the same could have been said for McGinn had he received the correct treatment and counselling. However (and this is the point), both of these men would be eligible for assisted death under the current proposed legislation, effectively robbing them of ever having a chance at a fulfilling life, no matter how depressed they felt in the moment of making the decision.
To my current patients: This is why I will not kill you, no matter how depressed or hopeless you feel, no matter how desperate your medical situation, no matter how much you may ask.
I have learned that feelings change, desperate situations become less desperate and you don’t know what the future holds any more than I do. And as your family doctor, I am not going to be the one to lose all hope in your future, no matter how bleak it might seem today.
When death does become imminent, as it will for all of us, you can count on me to strive to maintain your comfort and dignity until the end.
Dr. Michael Jones is a family physician in Victoria.