A last gift of love: the night before my father died

my father

I am very proud of my profession. There is probably no other profession that has done so much to save lives and ease suffering. However, I have no illusions about the very real problems in contemporary medicine. I’ve experienced most deficiencies in medicine, either directly or through family and friends, but my father’s story is probably the one that burns most brightly in my mind.

Elsewhere, I have recounted how my own colleagues in the hospital where I worked diagnosed my father’s cancer but neglected to tell him. A small lung cancer had been seen on a routine chest X-ray more than 7 months before he coughed up blood. By the time he had his first symptoms, the cancer in his chest was the size of his fist.

If that weren’t bad enough, the doctors, my personal friends and professional colleagues, attempt to deceive us about the findings on the original X-ray. It was only because I worked at the hospital, and could access the X-ray myself, that we learned about the original mistake. And that’s not even the worst part of the story.

My father received the diagnosis on November 1. It was a complete shock since he had never smoked, but approximately 10% of lung cancers occur in non-smokers. After the debacle of unearthing the original chest X-ray and confronting the doctors involved, everyone did their utmost to try and cure him. Nothing worked. Despite multiple types of chemotherapy, the tumor continued to grow and press against his lungs. The tumor produced large amounts of fluid that made breathing difficult. Gradually he developed air-hunger, a sensation that is reported to be worse than pain. He felt like he was suffocating even when he was working as hard as he could to draw breath. By December 25th he was back in the hospital again.

Late that evening my mother called me at home. She was in tears. “You must come to the hospital,” she said. “Your father is in such pain and no one will help him.” I nursed my infant son to sleep and headed for the hospital, my hospital, the one where I had trained, where I worked, where I knew everyone and everyone knew me.

My mother was right. When I saw my father, I was appalled. He was sitting bolt upright in bed, gasping for air, and clutching his chest. I paged the intern myself and demanded his presence. He must have run at a brisk clip because he appeared immediately. We were standing in the doorway of my father’s room. I pointed to my father.

“What is the meaning of this?” I demanded.

The intern, to his credit, was abashed. He acknowledged that my father was clearly in terrible pain, and he acknowledge that my father was suffering from air-hunger and was therefore even more uncomfortable. We agreed. Everything seemed settled.

“Go get him some pain medication, “ I insisted.

“Oh, no, I couldn’t possibly do that,” the intern replied. “He’s dying and pain medication might hasten his death.”

I could not believe what I was hearing. Obviously he was dying. Every treatment had failed and there was nothing left to try. There was no hope of recovery. And we were going to withhold pain medication … why? To prolong his death?

“You’ve got to be kidding,” I barked, although he did not look like he was kidding at all. “I insist that he get pain medication this minute.”

“I couldn’t possibly do that,” he said. “I don’t have the authority. I’ll have to call my resident.”

“Fine. Call!” I demanded.

It was well after midnight at this point and he woke up his resident. I could hear that the resident was unwilling to order the pain medication, and I grabbed the phone. The resident insisted that he didn’t have the authority, only the oncology fellow could decide.

So I called the oncology fellow myself and woke him up. “Oh, no,” he declared. He couldn’t possibly order pain medication in this setting, because it might slow my father’s breathing and thereby hasten his death. Only the attending physician on call had the authority to issue that order.

Then I called the attending at home and woke him up. He listened and replied, “Look, Amy, I know you’re upset, but it’s the middle of the night. Why don’t we wait until morning when your father’s own doctor will be back and he can make the decision.”

At this point, I was screaming into the phone, and a crowd of nurses and support personnel had gathered to watch from a discreet distance. “You get in here and tell me that to my face,” I hissed. “ I will not accept it unless you come here and look at him and then dare to tell me to wait.”

I heard him sigh. “All right, all right. What do you want me to do?” I gave instructions for the amount of morphine I thought he needed, and handed the phone over to the nurse so she could record the order. I started to relax.

The nurse hung up the phone and I looked at her expectantly.

“I can’t give that morphine,” she said. “I’m not comfortable with giving medication to a patient so near death.”

At that point I was transformed into Shirley McClaine in the film “Terms of Endearment”, when she was told that her daughter couldn’t have her pain medication just yet because the nurse was busy.

“You’re not comfortable?” I screamed. “Not comfortable? Do I look like I care about your comfort? I don’t think so.

You go get that morphine or I will break into the narcotics cabinet myself and get it, and then I will report you to the hospital administration for failing to follow an order!”

She hesitated. “Oh, all right. If you’re going to be that way about it.”

“Yes,” I said. “I’m going to be that way about it.

She got the morphine and hung a morphine drip. Within 5 minutes my father began to ease back against the pillows. After 10 minutes, he looked at me and smiled. “I feel great!” he said. “I haven’t felt this good in months. This is terrific.”

He slept then, and I wept. He died less than 24 hours later. Throughout the day, he kept telling everyone how wonderful he felt. His last words to me, before he lost consciousness and died:

“Don’t worry, I’m going to be fine. I’m just going to rest for a bit.”

 

  • Jane Smith

    Just resd this. Shamefull care your family recieved. Your father has a wonderful daughter in you. I do hope a formal inquiry occured after this. Sadly, these situations continue to occur, even in 2014, in hospitals every day. It’s getting better, but not fast enough.

    We were blessed with hospice nurses when our dear mom passed. But I know we were “lucky” and too many patients do not have this. My dream is to go back to school to work in hospice and/or palliative care.

    Thank you for sharing your story.

  • AlisonCummins

    More horrible. Our family has been lucky that comfort care has been quickly forthcoming when required. Sometimes when a doctor can’t save a life they can still offer a peaceful death surrounded by family. This is a great gift.

    I am so sorry.

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