The Medicine

by Karen Hitchcock

  Though deaf, Irena whispers. I look at her: cataract, arthritis, stains on her cardigan, false teeth that are too big for her gums so they move up and down independently of her lips when she speaks. I get inefficient: I leave the desk and sit next to her so I can hear. Her English is halting, slow as calligraphy. I ask her if she wants me to arrange a Russian interpreter for next time. She looks at me and raises an eyebrow: “You don’t like my English?” I ask her how she has been since she last came to the clinic. She says what she says every time thereafter: “I am ninety-four, doctor. I am old.” She always pauses here and raises a finger before her punchline: “But I am not dead yet.” Then she laughs.

  I feel her pulse or listen to her lungs, and she tells me snippets that over months become grand narratives. In Stalin’s Russia, her husband was taken to a labour camp for running his own business as a tailor. They wouldn’t let him take his violin. For a year, this tiny woman travelled to the camp every week and demanded they give it to him. She wrote letters. To Stalin. They relented. Her husband played so beautifully he was granted an unofficial reward: though it was against the rules, Irena could stay in the camp for a week.

  Once patients enter a nursing home, they are no longer eligible to attend this clinic. It’s another world, and all the rules change. I know Irena is on her way there when I sit next to her, doing something clinical, and she whispers in her ancient staccato: “Doctor. This week. I dirtied myself. Two times.”

  The black heart of a health system based solely on utilitarian economics is the unspoken truth that once a citizen ceases to be productive, their care ceases to be cost-effective. If you are old and sick and reliant on the state, you are a dead woman. As a Russian Jew born in 1919, Irena had been a dead woman many times before – in 1941, for instance, until her father, whom she never saw again, intervened in her fate, saying, “You must be far away by morning.”

  When Irena doesn’t turn up to two appointments in a row, I realise she’s been moved to a home. I am sad and increasingly troubled by questions about the camp that only she can answer. Did her husband have his own room? What was in it? Was there a window? Was the bed comfortable? What did they eat? Was she happy? I start to feel panicked when I think of her. What was it like in there?

  I call the nursing home and ask them to ask Irena if I might visit. She says to come tomorrow. The next day, I step into one of the taxis lined up in front of the hospital and ask the driver to take me to the nursing home. The taxi driver looks from my face to my hospital ID and back to my face; then he drives me 300 metres around the corner.

  Irena’s room has a narrow bed, a wardrobe, a bar fridge and a single armchair. I sit on her walking frame and ask how she is. She is old, but not dead yet. We laugh at this. She tells me she fell and thought she was being taken to hospital but instead found herself in this room. Someone brings one cup of tea and a dark brown biscuit, and smiles at me over Irena’s head. Irena dips her finger into the plastic cup, says, “Cold,” and pushes it away. When I stand up to leave, she opens her fridge. It is full of brown biscuits, piled into the door shelves and drawers. She insists that I take some and wraps a handful in a napkin. She puts the parcel in my hands. “Will you come again?”

  I push out into the sun and stride back to the hospital. The young rule the world; we stomp around doling out mean rations to the old, the machinery of our secure, able bodies purring to us the myth that we will live forever. And one by one my patients retreat to these small rooms and then slip away. Soon they will all be gone. And then it will be your turn and mine to sit in cells and drink the weak tea they hand out at eleven and two, hoarding biscuits in our fridges. Not dead, yet.

  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’d listen. 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 eighty-one 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 twenty 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 of 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 okay.”

  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 tortur
e 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 predetermined 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 choose that, or didn’t think she should even be offered the choice. It was a failure of empathy disguised as empathy. A failure of imagination.

  The Dementia Cure

  Mrs Finch was sent to the hospital by her nursing home after she punched an attendant. Prior to the incident, she’d apparently been a model inmate. She was delirious, probably due to an infection, though she didn’t look terribly unwell. She sat on the side of her bed, hissing any time we came near her. “She won’t let me do her vitals,” a nurse said. The other nurse had just fled, crying, after Mrs Finch called her fat. I stood at the end of the bed, watching her, monitoring her respiratory rate, seeing if I could detect cellulitis or an ulcer on her exposed skin. She turned, narrowed her eyes, pointed her finger at me and said, “Have you seen how you look? … Well, have you?” She lowered her finger and shook her head. “You used to be so pretty … and now look at you … You’re disgusting. You’re nothing but a dirty, disgusting drug addict, you are.”

  “I know,” I said. “It’s terrible. I’m sorry.”

  She nodded, satisfied. “And so you should be.” She pointed at the beds opposite her, where two patients lay staring at the ceiling. “And look at what you’ve done to them. Look at them … look at what you’ve done …”

  I looked. I could see what she meant, though they’d both be fine in a day or so. She turned back to me, her talon my way once again. “And you know the worst part of it? You meant it.”

  I’m not scared of developing dementia. It’s bound to happen: all my great-aunts lived through the last years of their nineties with it. They weren’t unhappy. They remained perfectly content – chipper, even. Their children’s and grandchildren’s feelings were another matter: grief, as ever, trailing love. I’m not scared, but I do everything I can to avoid it, or delay it. Drink coffee. Exercise. Eat vegetables. Study. Read. Love. Leave the house periodically.

  Everyone in the developed world is living longer. Doctors congratulate themselves, governments tell us to tighten our belts. By 2028 the number of people in Australia with dementia is expected to reach over half a million, and we’re all waiting for the medical breakthrough. The promise of cures for non-communicable diseases captures our imaginations and leads to large funding for biomedical research programs. Funding research is a good thing, except when it prioritises drug development and marginalises action to prevent and delay. And when it comes to the heterogeneous group of syndromes known collectively as dementia, it seems there is no medical breakthrough on the horizon. Years of research have focused on the “amyloid hypothesis”, the idea that the plaques found on autopsy in the brains of most people who die with Alzheimer-type dementia are the cause of the cognitive decline. However, one-third of elderly people with a brain full of plaques have no symptoms of dementia at all. Two-thirds of people receiving a diagnosis of “early dementia” based on current screening tests don’t have it and never will. Claims made for some heavily promoted dementia drugs – that they slow progression and mitigate symptoms – are almost completely unfounded. In trials they increase a person’s score on a 70-point scale by 2.8 points, which translates to far less change than social and behavioural supports would bring.

  In 2010 a group of researchers, led by Karen Ritchie, published an epidemiological study in the British Medical Journal outlining strategies to reduce dementia incidence should no cure be found. They identified four modifiable risk factors for the development of dementia: depression, inadequate fruit and vegetable consumption, diabetes and “crystallised intelligence” – a measure of lifetime intellectual activity and cultural exposure. They concluded that improving these factors was likely to have a huge impact on reducing the incidence of dementia, outweighing even genetics.

  An editorial that ran alongside this article urged the reader to remember that the results “may help to identify people at increased risk of developing dementia, but it is too early to call for prevention programs that target these specific factors”.

  Given the two editorialists’ attitude to the health of the population, I was interested to read in their conflict-of-interest statements that they’d received honorariums from drug companies for “research”, “lectures” and “speaking engagements”.

  Around the time the article went to press, one of the companies supporting these editors had a “dementia-curing” drug named bapineuzumab entering human-testing phases. The drug removed plaques from the brain. Unfortunately, in the following years this plaque removal was shown to have no impact on cognitive impairment, and the drug (which would have been prohibitively expensive) caused brain swelling and meningitis in some trial participants.

  Medicine and society have entered into a folie à deux regarding medicine’s importance in gigantic population ills. We believe that genetics and pills and enzymes bring us health. We wait for the dementia cure (the obesity cure, the diabetes cure) rather than changing our society to decrease incidence and severity. We slash social welfare programs and access to GPs and ignore the downstream effect this will have on future generations.

  To reduce non-communicable diseases, the actions we need to take are societal: make it easier for people to move more and eat well, strengthen education, and promote community participation and meaningful work. Our collective delusion is that we can have all the benefits such a society would offer without the structural supports necessary to bring it into being, that we can attain health by inventing and buying drugs.

  It is hard to know which is the more utopian vision: magic pills or a society serious about prevention.

  Big Pharma

  It was midnight and I was lying awake in bed, thinking that I should have been a surgeon. If something went wrong, I could cut it out. No nonsense, a clear cut. We physicians just sit around trying to protect organs with a bunch of drugs. Protecting organs is like being a soldier in peacetime. You hang out, doodling on script pads, deterring attacks with your presence and with wishful thinking.

  Most of our drugs are barely better than wishful thinking, I was musing. The giant global pharmaceutical research enterprise is dedicated to a program of small-scale risk fiddling. Where’s the new, heroic life-saving drug? Where are all the new anti-microbial agents? There aren’t any, and it’s all Big Pharma’s fault. There’s major money in tweaking what we already have: turning a 3 per cent risk into a 2.8, making something more consumer-friendly or more expensive. And we pretend this is progress, when really all we do is spin round and round. We pretend our interventions are huge. We pretend we’re at war and every decision is life and death. Mostly we tinker at the edges, sweating over drug X versus drug Y. Drug companies urge us to choose X, please choose X. It’s 0.001 per cent better.

  Such were my ruminations when a registrar called me to say that the emergency department had referred us a young guy with big fat blood clots blocking the flow of blood to half of his lungs. I stopped feeling sorry for myself and started issuing instructions.

  Clots wreak havoc. They prevent blood reaching sections of your heart (resulting in a heart attack) or brain (a stroke). They stuff your deep leg veins, turning them into a
blood pudding that can tear off and lodge in your lungs (a pulmonary embolism). They clog the fibrillating atrium of an irregularly beating heart and fly up into your brain. The terminal event in most cancer patients is a clot blocking something vital. Clots can kill you, but we can treat clots.

  For decades we’ve been using a drug called warfarin for all kinds of clots, particularly to stop ones that form in a fibrillating heart from reaching the brain. Our patients jokingly refer to it as rat poison, because that’s exactly what it is. And it works. Physicians all have a feel for it: to whom we should give it, from whom we should withhold it. It has an antidote if you take too much. But in recent years a bloom of expensive new drugs that “thin the blood” has hit the Pharmaceutical Benefits Scheme, promoted heavily by gangs of drug company reps bearing shiny briefcases filled with glossy brochures.

  We’ve talked about clots in journal club (a kind of book club for medical staff) for the past three weeks in a row. And it’s on again this week. We can’t rely on drug company salespeople for information. We have to review the research ourselves: all those sparkling multi-million-dollar drug company trials, featuring thousands of patients who are younger and healthier than ours.