Every time I visit my great grandmother, Tata, Atul Gawande’s Being Mortal floods my thoughts. Tata is 101 and developed severe dementia within the past two years. In 2019, she fell and fractured her hip. In the hospital, she recovered poorly. The physicians on her team offered hospice. My grandfather (her only son), declined fervently. Instead, he insisted on moving her back home to my aunt’s house, where my great grandmother, my grandfather, and my grandmother, along with my aunt, uncle, and their two kids all lived. No amount of discussion could sway his opinion. So, she was moved home. At that time, was it too late to ask Tata what she wanted? Every decision had been made by my grandfather. Just as Gawande experienced with his father, we never asked the person in extremis for her end-of-life goals. Today, her dementia is profound. She spends each day either sleeping or strapped in a wheelchair in front of the TV. And my grandfather spends most of his waking hours in front of the TV feeding her.
At this time, I was in my second year of medical school and had recently read Being Mortal. I decided to have a discussion with my grandfather. I asked him if he thought about her quality of life. He didn’t know what I meant. I clarified if he had ever asked before all this what she wanted with her end-of-life care. “It doesn’t matter,” he replied. It was his duty to take care of her as a son to the best of his abilities. In our Chinese culture, transitioning our parents to nursing homes is considered abandoning them. We view old age as a time we can be the caretaker for our parents. My grandfather has been in denial about his mother’s decline for the past two years now, and from the perspective of a granddaughter, I only have regrets but no solutions. My regrets are not reading Being Mortal earlier and urging my family to broach the difficult discussion of end-of-life goals before Tata succumbed to aging and cognitive decline.
Gawande writes, “We want … to be the authors of our lives. This is the very marrow of being human.” I know my grandfather has thought about how she is currently experiencing “life.” As she can no longer connect with the outside world, she has lost the marrow of being human. It pains me when I Facetime him, and I see Tata staring absentmindedly at the wall. He will gently turn her face to the camera and convince himself that she is responding to our voices. “She smiled!” he will shout, as if the louder the words are the truer they will become. Gawande transformed his frustrations with how our society deals with terminally ill patients into actively involving palliative care; my grandfather is transforming his pain into sacrifice.
I cannot let anyone else in my life experience this pitiable helplessness – both Tata’s helplessness over her life and my grandfather’s helplessness over his dear mother’s life. “The battle of being mortal is the battle to maintain the integrity of one’s life—to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were.” Gawande will forever impact the way I approach end-of-life conversations. The conversation that I had with my grandfather was the hardest conversation I have ever had, but it was necessary. His initial reaction was pure anger. He was livid that I did not value my great grandmother’s life. I wish I could say that he later called me with newfound clarity, but we haven’t spoken about it again. No one in my family has spoken to him about it again. I know I can’t change the way we are coping with Tata’s dementia. In the future, I will welcome these difficult conversations to empower my family members and patients to continue writing the entirety of their life.
Jennifer Li is a medical student.
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