Thinking again about palliative care
Before I started studying medicine, my grandmother was diagnosed with idiopathic pulmonary fibrosis. I had no idea what that was. “Scarring of the lungs,” she said. When I announced my plan to become a doctor, she was ecstatic with pride. She’d tell anyone who listened. Like the person scanning our groceries at the supermarket. She’d look at him, then at me, then back at him, and I’d know it was coming. “This is my granddaughter.” He’d look up, his face all like, And? She’d lean in and say, “She’s going to be a doctor.” I’d roll my eyes and go, “Nan, jeez …”
When I visited, the first thing she’d say to me as I walked in the door was “Stop. Stand over there. Now turn around.” I’d roll my eyes. “I just want to look at you,” she’d say. “Now come here, and bring that comb.” She’d been a hairdresser. My hair didn’t often live up to her standards.
In second year I bought my first stethoscope. When Nan said, “Stand over there,” I said, “Wait!” I pulled it from my backpack, looped it around my neck and turned around. You should have seen her face.
By the time I was in third year, she was 81 and permanently attached to a tube that went from her nostrils to an oxygen concentrator. The tube was long enough for her to move all around the house. When we went out, she took a small oxygen cylinder on a trolley. She said, “My lungs are ‘diseased’ – what a terrible word … listen to them if you wish.” I pressed my stethoscope against her soft, pink skin, and caught my breath. By then I knew what the sounds meant. During her afternoon naps, I’d get into bed next to her with my textbook and she’d quietly watch me from her side of the 20 or so pillows.
One time she said, “I have a really bad pain here on my right side.” “What’s it like?” I asked. “When did it start? Does anything make it go away? Turn around.” I gently pressed the spot and she winced. “I think you’ve broken a rib.” We looked at each other with our eyes open wide. Her doctor sent her for an X-ray, held it up to the light and said, “You’ve broken a rib.” She beamed at him. “I know. My granddaughter already told me.”
Just before my fourth-year clinical exams, she fell in the bathroom one night and lay on the cold tiles until morning. At the hospital they said she’d had a heart attack and things looked bad. She was too weak to drink. She gripped my hand, hard as steel, and whispered, “I don’t want to die yet.” The physician said, “We should perhaps consider palliation …” I begged him, “Please keep trying.”
In hospital she told me halting, dreamy stories about how her husband developed a brain tumour in the 1950s. They knew it was a brain tumour because he was fixing his car one day and his right arm rose straight above his head all by itself. They stood there by the car, both staring at his risen arm as if it were a stranger. After the operation, she cared for him at home. The doctor taught her how to inject morphine.
One evening Nan’s IV drip blocked and a junior doctor came to find a site for a new one. I don’t know what the drip was for – fluids, diuretics or antibiotics. He said to me authoritatively, “You realise this is futile, to torture her like this?” I tried to explain – that, for her, being in hospital and the pain of a thin needle was worth the chance for a little more life – but it came out as a stutter. I just stood there under his accusatory stare, gripped with deep shame. He told me to wait in the corridor. I heard him croon to my nan as she winced with each of his failed attempts: “I’m sorry, you poor thing. This is cruel. We know it’s unfair.” There was silence for a moment. “Let’s try the cubital fossa,” he said to the nurse.
When they were done, they walked out and past me without a word. I went back in, pressed my cheek against her cool forehead and said I was sorry. She whispered, “Don’t worry. I’m OK.”
She came home for a few months. She couldn’t get herself to the shops anymore and was in a lot of pain from her breaking bones. “What do you do all day?” I asked her. “I remember,” she said, smiling mightily. “I play in my memories.” She was happy to be alive. But slowly her breathing deteriorated, her fingers turned purple and then she couldn’t get out of bed. She couldn’t think about anything except her next breath, and it was never quite enough. We talked about it. I called the palliative care service and they admitted her to the hospice, where she was given drugs to relieve the torture of slowly drowning. I’d bring a book to the ward and climb into bed with her. She’d rest her head on my shoulder and close her eyes.
There is a push for palliative care “pathways”, for treating the old in their nursing homes, for withholding treatment that is “futile”. We seek ways to make things in the last months and years neat and pre-determined and (dare I say it) cost-effective. But no algorithm or flow chart can accommodate the messy intricacies of dying. Who decides what life is worth living? We cannot know in advance what we will find tolerable. If you had asked my grandmother if she would have been happy to live housebound, attached to an oxygen machine, even a year before it happened, she would have said no thank you. She would have chosen death. The resident attending to my grandmother’s IV drip was filled with a sense of moral righteousness. He was disgusted by the attempt to pump life back into a damaged and dying old body; he couldn’t believe she would chose that, or should even be offered the choice. It was failure of empathy disguised as empathy. A failure of imagination.
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