by Robert Manne
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.
*
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 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 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 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 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 choose that, or should even be offered the choice. It was failure of empathy disguised as empathy. A failure of imagination.
*
Researchers relate ‘decision fatigue’ in executives to the degradation of sound judgement and to poor impulse control after hours. Nearing the end of a week
end of dealing with a ward full of sick patients, and faced with a particularly challenging case, I recognise I have it by my own sudden irritability and my desire to decide anything, for a bit of relief. Rather than start saying stupid things in an authoritative tone and driving a Maserati I don’t own 200 kilometres an hour down some freeway, I tell my registrar I’ll be back in fifteen minutes and walk to my office.
Each year, medical errors cause hundreds of patient deaths in Australia. Decision-making processes are therefore interesting to educators and researchers seeking to reduce avoidable harm. You see your GP and your blood pressure is elevated: whether you will be prescribed a drug or not depends on your ‘risk profile’ – whether you smoke, have diabetes, have cardiovascular disease – and also on your doctor’s threshold for prescribing. The doctor will hopefully include you in the decision-making process, but he or she still needs to recommend a particular course of action and tell you why. The drug must be chosen from one of dozens on the market. Each decision is made through a mix of scientific methodology, pattern recognition, probability and personal opinion.
National consensus guidelines offer basic treatment algorithms for all the common diseases. If a patient has a chronic lung disease, you can check these guidelines and prescribe what is considered to be best current practice. There are websites with ‘consumer decision-making tools’ where patients can type in their own data and get a computer-generated recommendation. There are also equations and scoring systems, far too many to remember, so we carry them around in apps. The Wells score determines the likelihood that a breathless patient has a blood clot in their lung; the CHA2DS2-VASc score guides the prescription of anti-coagulants by determining the risk of stroke from a fibrillating heart; the Child-Pugh score (based on tests for blood albumin, bilirubin and clotting, fluid in the abdomen and degree of brain malfunction) is used to work out how long a patient with a failing liver has to live. Should a drug be prescribed for osteoporosis? Type in the patient’s data and get an answer. There are protocols in hospital for the treatment of disasters like heart attacks, catastrophic haemorrhage and community-acquired pneumonia. These are designed to guide decision-making and reduce human error, and are helpful if the patient’s body follows protocol. But if I followed the guidelines for all of the diseases afflicting my typical elderly patient, she would be on twenty-one medications and I would be killing her.
Hippocrates said that it is more important to know what kind of patient the disease has than what kind of disease the patient has. You’d think the body would be more straightforward; we don’t have that many organs and only five of them are vital. Sometimes you just don’t know exactly what to do: you study the form, consult your mates and the major online encyclopaedias, take an educated gamble, then sit back and watch the race, sweating bullets. Maybe that’s why some people hate doctors, those culpable, imperfect decision-making machines.
As a trainee you pass the difficult decisions to the boss, with relief. But now I am the boss, and I have a young patient with pneumonia and two litres of bacteria-filled pus collecting outside his lungs, making him septic and delirious. The treatment is intravenous antibiotics and surgical drainage. But the patient’s liver is failing after a decade of serious drinking; it no longer makes clotting factors, so his blood is thin and he may bleed to death if the surgeons cut into his chest. His heart is straining; his brain is faltering in a bath of blood-borne toxins. He will likely die without the operation. He will likely die with the operation.
The patient laughs and pulls his blanket over his head when I outline his options. His only living relative tells us to do what we think is best. The surgeons say it’s my call. So do the infectious-diseases physician and the gastroenterologist. The anaesthetist says he’ll intubate him but estimates that he has a seventy per cent chance of death. My team of junior doctors look at me expectantly, trusting that I have the answer. There is no protocol, no app that can share the responsibility.
All day I have that feeling you get when you take a step and think you’ll hit pavement but your foot falls unexpectedly into a gutter. No sooner have I convinced myself that it would be futile to put him through surgery than I think, ‘Well, why not put him through the surgery? What have we got to lose?’ Even Hippocrates knew that ‘when the entire lung is inflamed … he will live for two or three days’.
He could die on the table, but then again he might wake up with a clean chest cavity and say thanks. According to his Child-Pugh score, he could last three more years. You can do a lot in three years.
My other patients, with simpler combinations of pneumonia, dehydration, intoxication, and heart and kidney failure, recede in their crisp white beds. Their treatments are settled; all they need for today is time and medicine.
I tell my registrar I’ll be back, go to my office, and pick up a book about a journalist and a doctor who may or may not be a murderer. I never wanted to be a lawyer, because laws are just made-up rules. I never wanted to be a gambler, because I don’t believe in luck. I drink a glass of water and walk back to the ward. I take the patient’s file – that poor sick man – and write a summary, each of his vital organs listed and followed by its narrative of failure. It is useful, to see the facts reduced to a story in a format that approaches an equation that ends with a decision.
The Monthly
Wolf Like Me
Antonia Hayes
The bruises came first. They were scattered about the soft skin of my stomach and thighs; my body was a galaxy of haematoma constellations. Sometimes they would worry me, bruises that appeared overnight when I had no memory of any physical trauma. Mostly I ignored them. My clusters of purple stars only bothered me on the grounds of vanity, like when I wanted to wear a short skirt or bare my midriff in a bikini. Some of my boyfriends even liked my bruises, running stray fingers over my black and blue body, asking where they came from and if they hurt. Once I was told they were sexy. Perhaps there’s something charming about being the sort of delicate girl who literally bruises easily.
There were other symptoms too: crippling fatigue, rashes, joint pain, food intolerances, swollen lymph nodes, a constant battle with anaemia no matter how many iron tablets I swallowed or how many rare steaks I ate. Once or twice I’d had memory blackouts – for no apparent reason I didn’t know what happened the night before, and how I’d made it back to my bed. There was that strange case of acute pancreatitis; an inflamed seventy-two hours of sharp, intense pain that my doctor couldn’t explain or understand. My body had given us hints, but symptoms are never symptoms when you’re not looking for a cause.
My inevitable downfall was the sun, the trigger of an intense flare of illness. My friend Bella and I had gone on a holiday to the beach, where we sat on the hot sand all day and read Doris Lessing, and lay out on cheap inflatable lilos tied to a buoy, floating under the Mediterranean sun. We jumped off rugged clay cliffs into the sea, sipped on pineapple-flavoured cocktails, laughed and danced to Europop. After a week our skin was dusky and our hair fell in saltwater waves. But I came home with a fever, aching limbs, and a violet shock of bruises. One leg was indigo and covered in welts. In the days following the holiday, my body was so heavy that I couldn’t get out of bed for almost a week, and so sore that, incapable of standing up, I vomited in my sheets and lay in a pool of my own sick for several hours until I could move.
When I made it to see the doctor, he couldn’t explain what had happened to me, why I was sick. There were tests and endless amounts of blood work – prodding, poking and jabbing – and the crook of my elbow became accustomed to the pierce of cold metal. He took vial after vial of my blood, hoping that somewhere in my cells was a clue to the mystery of my illness. The first round of tests sent to the pathologist were inconclusive. The next results prompted one of those urgent phone calls: ‘I have some bad news for you, you need to come to my office right away.’ The sort of news you can’t be told over the phone.
I remember sitting in the light-blue vinyl chair, my handbag on my
lap and my hands in a ball, as the doctor told me what he’d found. My platelet count was upsettingly low and my white blood cell count was frighteningly high. He showed me a sheet of paper with columns and numbers in rows that I didn’t understand. Bar charts and histograms. My results were well outside the normal range. I tried to picture my blood, like a bright red pool with too many white lifesaver rings set afloat to rescue the drowning.
‘What does it mean?’ I asked, scanning over my platelets and cells.
‘I need to test your bone marrow,’ the doctor said.
‘How come?’ I shifted my weight in the vinyl seat.
He didn’t look me in the eye. ‘To make sure you don’t have leukaemia.’
We had to act quickly. My appointment to have the bone marrow aspiration was forty-eight hours later, and for the next two days I was emotionally paralysed, watching videos on YouTube of tragic photo montage tributes to children and adults who’d died of leukaemia, soundtracked to sad but ultimately uplifting Sarah McLachlan songs. I read case studies of chemotherapy gone wrong and started to research holistic alternatives. The survival rate in adults diagnosed with leukaemia was fifty per cent. At twenty-six I’d never considered my own mortality before, but suddenly I had to think about a universe where the chances I might die were the same as the flip of a coin. Maybe I had cancer. What would happen to my unrealised dreams, what would happen to my very young son? Before then, those questions had only ever been rhetorical. I bought a Do-It-Yourself Will Kit online and listed my beneficiaries and the disposition of my estate. There wasn’t much to give away and bequeath: I left my books to my dad, and my son to my mum.
I shuffled into the pathology lab in an open-backed hospital-green robe, and was told to lie on my stomach. As they gave me a local anaesthetic, I caught a glimpse of the needle the doctor was going to inject. Bone marrow aspiration needles are thick like a nail and as long as a forearm. On my hip there’s a shiny scar where the needle went into my skin, piercing through the bone – my posterior iliac crest. The scar is a perfect circle: the precise shape of the needle’s hollow form. When the needle went in, I bit the inside of my mouth so forcefully that I drew blood. I heard my pelvis break open.