Perspective: My Father’s Final Lesson: Death Is Not Defeat
A physician’s reflections on how his dad approached the end of life with dignity.
[Left] The author’s parents (standing) cheer the release of his debut book
After a great start, the year 2024 quickly turned bleak when my dad, at 74, suffered a fall in a parking lot. It resulted in a mild shoulder joint dislocation, but that triggered the perfect storm in his body. Candidly, a gradual decline over months had preceded his fall, filled with muscle loss, fatigue, decreased activity, and a low appetite—all attributed to aging and “slowing down.” It culminated in a four-week period of multiple hospitalizations, tests, procedures, and sheer chaos.
While he never had a diagnosis of dementia, I often wondered about short-term memory issues. Nonetheless, he was independent, driven, and an amazing father and grandfather. In the hospital, my dad developed bad “delirium.” He would be disoriented, screaming, thrashing, and wouldn’t sleep. Having seen it far too many times in patients, and having counseled families, I knew this was normal for dementia patients who had been removed from their home environments. But it was so hard to watch it in my own dad. He became weak, even going to an acute rehabilitation hospital in between hospitalizations to get stronger. That lasted only two days, because the only place he wanted to be was at home, where his heart remained.
During that chaotic first hospitalization, I couldn’t shake the feeling that he was declining rapidly in front of our eyes. As much as I wanted to just be his son, I couldn’t stop being a physician. I would advocate for him, but we never really had a solid grasp with one diagnosis that we could treat. Can you believe that I was desperate and hoping for a biopsy result to be positive for a cancer? It was because I wanted something to treat and try to fix him!
Less than 24 hours after being discharged from his third hospitalization, and arranging for an overnight caregiver at home to help my mom, I got multiple calls throughout the night to inform me that he was disoriented, screaming, and felt like he couldn’t breathe. At first I thought it was just nighttime delirium. But when I heard that his oxygen level was 75% despite being on oxygen, I knew we were in trouble. I scurried half-awake to my parents’ home, just as paramedics were rushing him to the hospital.
Testing confirmed that he was in respiratory failure. The X-ray of his chest looked so awful that I almost wished I wasn’t a doctor. I will never forget that image. He had what appeared to be hypersensitivity pneumonitis, which had been smoldering for years and was now attacking with vengeance. A palliative care consultation, which had happened days earlier, was a silver lining. My dad was weak, barely eating, easily confused, not sleeping, and totally miserable. What would he want us to do for him if his breathing and heart stopped? Would he want CPR? Would he want to be on a ventilator? Does he understand how sick he is? Having a separate physician helping with this conversation was exactly what we all needed.
That day was ideal because he was alert. The palliative care physician was phenomenal. My dad, mom, brother (who joined via speakerphone), and I had a productive conversation. He understood all of it, and decided he did not want to be intubated (put on a ventilator). Nor did he want CPR if his heart were to stop. Medically, this is called DNR/DNI (“do-not-resuscitate / do-not-intubate”). Don’t assume that agreeing to DNR/DNI means they will not be treated. He was going to still get all treatment short of being put on a ventilator, and that’s what my dad wanted. We felt lighter after that decision. Little did I know that the plan would come to fruition merely hours later. During that last hospitalization, he was so miserable with delirium. Our hope was to improve his oxygen levels, but it didn’t happen despite medications. He didn’t want a ventilator. That turned out to be the right decision, because he would never have gotten off it.
On a Monday morning, two days after being admitted, he just woke up. His mindset was the clearest that it had been in weeks. There he was, my dad, strong-willed and firm. He knew his lungs were failing. “Just get me home,” he said. “There is no treatment or recovery. I cannot live like this. I want hospice.” We went through all the motions of family meetings and conversations with the medical team to ensure he and all of us were on the same page. But truth be told, I felt so much relief knowing his suffering would end.
“I have seen everything,” my dad went on to say. “Your brother and you are doctors. You’re married. I have beautiful grandchildren. Your mom has recovered from her stroke and is okay. I’m at peace. What more do I want? I’m tired. Let me go.” He didn’t want to suffer. Little did we know that he was making the best and wisest decision of his life, ultimately giving us a gift. He didn’t want to burden us with making that difficult end-of-life decision on his behalf. He wasn’t “giving up”; he was being practical. He was listening to his body. He was tearful and sad as we cried with him, but he was never once regretful.
My dad showed all of us how fear at the end of life can be combined with peace, comfort, and acceptance. As much as he preferred to be at home on hospice care, where he would be cared for by family and have medications to alleviate discomfort, his oxygen requirements were too high to accommodate at home. We agreed to start hospice care, involving medications to keep him calm and pain-free in the hospital. He passed 10 hours later, peacefully, with my mother, brother, and myself at his bedside. That’s the way it was supposed to be.
Families, as I have seen countless times, often don’t want to “let go” of their loved ones, and they feel guilty about not continuing aggressive care. But who is really benefiting from that at the end of the day? It’s definitely not the patient! Despite missing him daily, my dad’s wishes and approach leave me so proud. Hospice and end-of-life care, emphasizing the quality of life, results in dying with dignity and on the patient’s own terms. While my dad helped me become a better husband and father by teaching me how to love and be loved, it’s clear that his final lesson also helped me become a better physician. I intend to amplify it.
Dr. Dhaval Desai is director of Hospital Medicine at Emory Saint Joseph’s Hospital, Atlanta. He also serves as a Pediatric Hospitalist at Children’s Healthcare of Atlanta and as an assistant professor at Emory School of Medicine. He is the author of Burning Out on the COVID Front Lines: A Doctor's Memoir of Fatherhood, Race and Perseverance in the Pandemic.
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