“For the rest of my life, I’ll never see her again or smell the scent of her unwashed hair. I’ll never hug her soft squishy hips or sigh when she tells me to stop sleeping, get up, and enjoy the day.”
This runs through my head before I start sobbing in my car. Most of the time I feel fine, but when I confront the finality of my grandmother’s existence, tremendous grief washes over me.
Death is inevitable and yet when it confronts us, it is unfathomable. Before I became a doctor, I was quite unacquainted with death. It was not until my grandmother passed away that I began to empathize with my dying patients and their families truly. When it came to patients, I could see so clearly; but when it came to my beloved grandmother, I was unable to face her mortality. Once she had been hospitalized a few times within the span of a year, I knew from professional experience that it was only a matter of time.
When my mother informed me that my Mothi Aai Malan was towards the end of her life, the doctor part of me understood this, but the granddaughter part of me could not. I called her three days before her death. She was in India, so I could not physically be with her. But, had I allowed myself to admit to her frailty, I would have called her every day and night. She was the first major love I lost in my life — and, boy, it hurt. There was a new permanent pain that I had wished would disappear, but I knew never would.
As we get older, various parts of our bodies begin to break down, like a 1986 Chevy Camaro. The breaks get squeaky, the transmission fails us at times, or the engine rumbles thunderously. We take it to the mechanic in hopes of repair. Sometimes the wear and tear is fixable and other times not. In an aging patient, the same holds true. Kidney failure can be fixed, but on the tenth hospitalization the body may have a mind of its own and will fulfill its will regardless of medical efforts.
So often I see family members unable to recognize that the price of longevity can be a loss of dignity. The majority of the patients I saw during my residency training were extremely ill and elderly. Ninety-year-olds with respiratory failure being placed on permanent life-sustaining breathing machines, only to remain in bed traumatized me the most. A patient would lie there without the ability to speak or eat. He might make his needs known solely through the blink of imploring eyes. I did not understand why family members would do this to a person they loved so dearly. I encountered patients on their backs for weeks, sometimes months, staring at the blank ceiling overhead, awaiting the comfort of the curtain to be drawn as a determined sacral wound came into existence.
As an unseasoned attending physician in my first year of practice, I told patients and families the brutal truth. I wanted to prevent what I believed to be inhumane treatment. Hence, I would inform patients’ family members of impending death, and oftentimes, families did not want to hear this. There were times they were outraged and once or twice wanted to switch doctors. They wanted some hope, perhaps false hope, but hope nevertheless, that things might work out … That their father or mother might “beat” this. I could not understand why people would want to turn a blind eye to what was staring them straight in the face.
I finally realized once my grandmother died that people do not necessarily shun the truth, but they cannot allow their minds to process the looming loss prior to that loss actually taking place. No one wants to picture his brother dead; it is devastating. The brain’s natural defense mechanism against this pain is what leads family members to place elderly patients into a permanent vegetative state instead of considering the alternative of hospice. When the thread of life is thin, human nature desperately wants to hang on. Dealing with death in my own family equipped me to more gently participate in these tough conversations.
When you are told, “Do everything to keep me alive,” please ask yourself what that statement truly means. I know my grandmother was afraid of dying. I am quite certain that if my mother and I were not physicians, my grandmother would have had a tracheostomy tube on life support in order to carry out her wishes because she did not want to die. But what she did not comprehend was that a permanent respirator and being bed bound is what living would have entailed: no more weekly poker games, no more tutoring students, no more reading Nora Roberts novels or watching Indian soap operas on Zee TV.
In an era when one’s personal physician is not taking care of her in the hospital and end of life decisions have perhaps never been touched upon in that 25-minute office visit, I ask you to take a serious moment to discuss these issues beforehand. Despite countless advances in medicine, there is still no way to ascertain the perfect escape route from death. There needs to be a more open discussion regarding end of life care in this country. People are not prepared for death and understandably so. If you think about yourself and how you would wish to die, I bet it would be with dignity. This is the principle that should be applied to our loved ones. With further dialogue and education, perhaps, we can get there.
Prianca Naik is an internal medicine physician.
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