Come Home Sweetheart: A Fight for My Father's Last Wish

“Come home sweetheart, your father just got intubated!” Those words rang out and then echoed in my head as I was finishing up my patient rounds. As a medical student this was the most important part of my day, when I needed to focus the most. But on this morning I was a disaster—distracted, confused, sad, and heartbroken. The words had come from my mother who lived half way around the world. She had regrettably informed me that my 62-year-old father's worst nightmare had just occurred. He was now intubated and ventilated; he would spend his last days attached to this artificial life support.

On my flight to see my father, I started to think about how much I would miss this most important person in my life. I thought about the sacrifices he had made in moving my family to the United States, the love he had for us, his courage, his humor, and his smile. I felt confused. On one hand, I was really sad to be losing my father, but on the other I was glad his misery was going to end soon. He had suffered, up to this point, horrible postradiation esophagitis, nausea, and fatigue from chemotherapy; opioid-induced constipation; and worst of all, pain from his metastasizing lung cancer.

I believe what I thought about most on that plane ride was his last wish. My father, a family physician, always proud of his independence, had never really asked any major favors from anyone. He had, however, asked one from me just months before. "Son, I know I'm not going to live much longer; please make sure I die comfortably." It was simple—no major interventions, no miraculous modern medicine, just peace and comfort.

As I headed straight to the ICU from the airport, my U.S.-educated brain expected a lot. It expected choices and options. It expected to see my father sedated with adequate analgesia. It expected the choice to remove my father's artificial support.

However, what I saw in the ICU was very different. I saw a breathing tube in my father's mouth; I saw him squinting and teary-eyed, tachycardic, and hypertensive. But mostly, I saw his pain. When I asked about removing his tube, the physicians responded, “That would be considered suicide!” When I asked about his pain I was told, “Your father is sedated; he won't remember any of this.”

The doctors at his ICU unit told me they could not remove his tube due to government and religious laws. I felt helpless, I could not control the fact that my father ended up in a country that would not acknowledge his advance directive. But why wouldn't they treat his pain adequately? That surely wasn't a government or religious mandate.

I was told over and over by the ICU staff that my father would not remember any of this pain. I didn't care if he would remember his pain, he was currently in pain. He was suffering and could not speak for himself. He could not yell “Remove my tube! Increase my morphine!” His family was his only voice.

Our family went through a rollercoaster ride in those last days. One day his morphine dose would be up and one day it would be down. There seemed to be no rhyme or reason to this. And it mostly went down. We got statements from the doctors such as, “We are worried about overloading your father with morphine.” Medically, my father had a zero percent chance of survival without mechanical ventilation. How insulting to mention overload or addiction in the face of someone dying. There was terrible communication and evident cultural mismatches.

At one point we had agreed to his getting a tracheostomy to make him more comfortable. Coming back the next day we found him awake. Awake! And in pain! The doctors argued that it was the patient's right to be able to interact with his family in his last days, and we should accept this lessening of his sedation and pain medication. Why would we want him alert? What possible benefit for my dying father or his family would it be to have him aware of this very horrible situation?

I wonder about my father's choice to get his treatment in the United States, but to die in this far-away country. Did he know what would happen to his body? Could he possibility have predicted the amount of pain and discomfort he would undergo?

It was only after we found a pain and palliative care specialist that my father's situation in the ICU improved dramatically. A standing order to increase pain medications and sedation according to my father's signs and symptoms changed everything. No one was going to remove his tube, but at least he was not suffering any more.

On that memorable trip, I traveled to a part of the world that had forgotten, or maybe had never learned, about the importance of deciding “how to die.” Death is sacred, yielded to the divine, and not to be altered. But somehow this line became fuzzy after intubation, especially when there was no chance of extubation. Was it really unethical to remove my father's tube even if without it he had zero chance of living? Was it immoral to lessen the pains of disease and death?

My father passed peacefully, with enough morphine to control his pain, one week after my return to the United States. This trying experience for my father and my family taught us many things about confronting a dear one's death: 1) Communication must occur and be continuous between the family members and the providers; you can never trust that the conversation is over. 2) Death is always difficult, but it is much more tolerable when your provider is listening to you or your loved one and trying to provide as much pain relief and comfort as possible. 3) As much as we try to control how we want to die, it's almost never exactly like we imagine. All we can hope for is that our family and medical providers are with us and respect our last wish.