Recent events are reminding me of the week my mother died.
It was a remarkable experience, and yet ordinary and routinized. Like many end-of-life stories, Mom got sick, then she got better, then she got very sick. But we still expected that the end of this story would be us bringing her home.
On Wednesday, late at night, I got a phone call from the hospital. Mom had taken a very serious turn for the worse. Her doctor thought that the best course of action was to put her on temporary life support. I set aside the immediate desire to respond “whatever it takes” and said, “My mother does not want to be kept alive on a machine. Is that what we’re talking about?” The doctor said no, sometimes people can have a full recovery if we relieve their bodies of the stress for a day or two.
This struck me as a fine idea, and I gave him permission. On Thursday, I was treated to the bizarre experience of standing by my mother’s bedside and watching her flatline on the monitor. I supposed that since she had once had the same experience with me, there was a sort of poetic karma to this.
By Friday, it was becoming clear that my mother’s will to live, strong as it was, was being overcome by her diabetes. Too much of the rest of her had failed, and the doctor told me that even if she did recover her vital functions, she would have to spend the rest of her life connected to large machines, in a hospital bed.
It was then that I realized that my mother’s death was perhaps not the worst possible outcome of that week. My mother, if dead, couldn’t look at me from the bed where I had consigned her to a life sentence and tell me I had made the wrong choice.
Perhaps, on some level, she knew that. My rational self says this is impossible, but too much of what I experienced then and now has nothing to do with rationality. However it came to pass, on Saturday we got another call from the hospital. We all needed to be there. Right now.
My family went to a room set aside for the purpose of hoping or mourning, and I spoke to the doctors. They said simply, “it’s time.” I asked my family if anyone wanted any last words with her, and then it fell to me. I asked the doctors a few questions to which I already knew the answers, and then agreed.
They then started telling me about the natural autonomous reactions of a dying human body, that my mother would physically go through the motions of suffering, but they were sure she was already gone. I interrupted them and said I knew about such things.
That was the first moment when I saw something new in her doctors. It was surprise.
They had been through this hundreds of times. To this day I think of them as the human embodiment of compassion because even with the repetition, it was so damn clear that they cared about my mother, about my family, and about me. But though the caring words were meant, it was also clear that they had been rehearsed. Likewise, I as the family member had my own script to follow, one dictated by culture, by faith, by emotion. But in my case, also by science.
I’ll never forget the two-beat pause when I said, “yes, I am aware of that.” I think they expected me to be silent, or numbly acquiescent. I am sure they were prepared for a violent, irrational outburst, or a complete emotional breakdown. But they weren’t prepared for me, and I think it is because they had never heard anyone say that before. I don’t know why I knew that. I just did.
After another ten minutes that will stay with me for the rest of my life, during which my mother did not suffer, it was over.
I would like to say, to anyone who is perhaps unclear on the concept, that those four days were not celebrating a culture of life. The culture of life was every moment my mother spent with the people who loved her. Those four days were a culture of living death, a purgatory for my mother and those same people. The only culture of life to be found in the hospital was in the hands of her amazing doctors, who moved Heaven and Earth to try to send my mother back to her life. When they had done all they could do, all that was left was suffering.
In this purgatory, every moment carries significance. Is this the minute when you will make a decision that will forever stare back at you from the mirror? Is that the minute when you will say or do something that will inflict immeasurable harm on your family and loved ones? It is literally inhuman to live through — humanity, lacking omniscience, is not designed for such times.
There has been some national debate recently about morality and terminology. I generally decline to make sweeping universal statements on such matters. Here I will make an exception. Anything that prolongs such misery beyond what is medically necessary is unadulterated evil. Anything that introduces the seed of doubt into the minds and hearts of those who must make such decisions is satanic. Anyone who offers false hope to the loved ones suffering through this — for them, I literally wish that they will burn in Hell.
I do not understand how anyone could live through this themselves, and forget what it feels like. I do not understand how anyone calling himself “doctor” can forget the teachings and ethics of his profession and be an oracle of false hope. I would have thought such to be beyond human capability.
What I learned the week of my mother’s death is how precious our grip on rationality can be, how far you can be willing to go to hold on to illusory hope. In my case, somehow I had learned enough medical information to do the best I could for my mother, to never doubt my decisions, and to retain my sanity and soul in the process. Had I known a little less, had I been more receptive to those who offered their nostrums, or had my mother been subjected to a legal process that took control out my hands, I would have been in danger of losing both.
We all must endure end-of-life stories, first for some of our loved ones, and then our own. I wish everyone could have what I did. Caring doctors who told me the truth, and who trusted me to decide what my mother wanted. An unspoken understanding in my family that I was the best person to take on this burden, without rancor, bitterness, or disagreement. And above all, my mother, whose personality remains so vivid that when she was flatlining and her story transcended the instructions she gave me, I could simply ask her and feel I knew the right answer.
On some days, for some questions, I still can.
