In January 2015, during my second year of medical school, I got the call from my father that I had been dreading. My grandfather had been in and out of the hospital for months and was showing no signs of improvement. On the phone, my father calmly explained that Dada, my grandfather, had suffered debilitating seizures. To protect his airway, he would need to be intubated.
My grandfather, 93 years old at the time, had suffered health issues for as long as I could remember. But until now, each episode seemed to make him stronger. One morning before school in 1994, I discovered Dada on our kitchen floor, clutching his chest and wheezing in agony. He had suffered a massive heart attack, but only a few weeks after open-heart surgery, he was back to his morning routine of prayer, a walk in the garden, and precisely cut cantaloupe paired with traditional Indian chai. For 20 years after, Dada was the picture of strength and vigor, overcoming medical calamities with ease while simultaneously pursuing his interests in music and gardening.
Unfortunately, his active lifestyle and brilliant smile distracted us from the fact that his health would eventually decline. In August 2014, Dada was gardening outside and returned to the house severely dehydrated; he became confused and unable to move the right side of his body. He was rushed to the hospital and subsequently diagnosed with a left brainstem stroke, leaving the right side of his body completely paralyzed.
Following the stroke, Dada’s condition slowly but catastrophically deteriorated. His medical needs necessitated a transfer from our home to a nearby skilled nursing facility. Initially, his spirits were high and his enthusiastic participation in rehab made him a favorite amongst the staff. However, his hemiparalysis eventually caught up to him. As his facial muscles weakened, Dada lost the ability to control his speech and eventually the desire to speak. Unable to regale us with his beautiful proverbs or meaningless jokes, my once loquacious grandfather slipped into a silent depression and lost the will to fight on.
The last meal I shared with Dada was on Christmas Day, 2014. We wheeled him to the only open restaurant near his nursing facility, a Denny’s. Confined to his wheelchair, Dada remained isolated on the open side of a semicircular booth, defeated and morose, speaking only infrequently in a garbled and unrecognizable tone. He had no energy and had to be spoon-fed his liquid meal. My grandfather, an independent man from India who built a 50-acre farm to provide for his family, now required assistance for simple functions. I am not sure I believe in a soul, but surely if Dada had one before, it was now gone.
In January 2015, four days before he passed, Dada began to have seizures. Although he was DNR, the ICU team felt that the seizures could be controlled. So, against the DNR, my father—his medical decision maker—had him intubated to protect his airway.
As a family, we were in a unique situation. Of the six remaining family members, three were physicians, and I was a medical student. Although we knew what was going on medically, our decision making was no better for it. After his intubation, the seizures were compounded by further strokes and brain damage. The prospect of improvement faded. We were once again faced with a difficult decision, this time regarding the maintenance of life support.
We met with the palliative care team to discuss the decision. The meeting, unusual in its own right, became more unusual when the physician began not by asking us about our decision but by asking about the person my grandfather was. We spoke at length about Dada’s life and teachings. Through our tears, we eventually acknowledged that his love for life could not be confined to a bed, and, as a family, we agreed to withdraw ventilator support.
When I reflect on this experience, I realize that the meeting was not just about Dada’s code status but also about our family’s transition to healing. Afterwards, we no longer spoke of his decline but of the funny and ingenious things he did as a person. As we stood at his bedside, my father pointed out that, above all else, Dada was a teacher. As he began recalling the lessons my grandfather taught him as a young man, Dada began exhibiting Cheyne-Stokes respirations, a rare breathing pattern seen in patients with damage to their brain’s respiratory centers. It was an ominous clinical sign that, as a medical student, I had never seen before. As I took note of his unique breathing pattern, I embraced my father and felt at peace. Although we knew Dada would soon be leaving us, we were comforted knowing that the last thing he did on this earth was teach.
Maulin Shah, MA
M. Shah is a medical student, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania; e-mail: email@example.com.