‘He was a secondary-school teacher, an energetic fellow in his forties. He was practically never ill but had been feeling very tired for a while. He hadn’t paid it much heed, but when his nose suddenly started bleeding, he thought he’d better get it checked out. Diagnosis: acute leukaemia. He needed to start chemotherapy right away.
It all went pretty well, I thought. There were no infections, no serious complications, the nausea seemed manageable. However, he found the treatment horrendous, and although he went into remission, the leukaemia returned three months later. His only option was to go straight back onto chemo, but when cancer returns that quickly, the chances of survival drop to below ten per cent. For many patients that’s still enough reason to continue treatment, but not for him. His response was resolute: no, he said, not again, it’s not worth it. I don’t want to live the rest of my life in the shadow of this disease. He was young and still had so much to live for … we all wondered if it was the right decision. I was still in training, but the doctors around me were up in arms and even suggested calling in a psychiatrist to see whether he might be clinically depressed and not of sound mind. He asked what would happen if he declined treatment. I said he would die fairly soon but that we could help keep him on his feet as long as possible. I saw him often in the months thereafter. He’d made a list of places he still wanted to visit with his girlfriend, so came by whenever he was planning a trip. I would give him a blood transfusion, along with some stimulants to help keep him active.
He died four months later – four months in which he enjoyed life to the fullest. I spoke to his girlfriend afterwards, and she said that her grief had been eased somewhat by the wonderful time they’d shared together. We had all thought he was crazy to refuse treatment, but maybe it was the other way around. Only later did I realise I’d been looking at him through a purely medical lens. In our eyes, the lack of serious side effects meant his chemotherapy had been a success, but he had an entirely different perspective. As doctors, we often underestimate the impact of treatment on patients: hospital visits twice a week, blood tests, doctor’s appointments, then a few okay days before it all starts again. And all the while, the clock is ticking. I wondered: how do the survivors – patients and loved ones – look back on that period in their lives?
So often we read in the papers of how a deceased loved one fought bravely until the very end. But is that really the best option? Doctors are always in “treatment mode”; we’re trained to try to heal people. Although we do save lives, for many patients our treatments are hardly a walk in the park. This man confronted me with the harsh reality that treatment is not always the best option. The suggestion didn’t come from me – in those days, over twenty-five years ago, the thought of sitting back and doing nothing never entered doctors’ minds.
He taught me to be honest and open about the subject. Doctors aren’t just here to save lives. We need the courage to tell terminally ill patients that there are alternatives, that forgoing treatment can sometimes improve quality of life. Although doctors are definitely more open to the idea nowadays, I still think that many treatment processes are like a runaway freight train. There’s nothing wrong with continuing treatment, but patients should know what they’re getting into.
Putting the brakes on in time – that’s what it’s about. It’s just difficult to pinpoint the right moment. Patients often know before we do, they sense and realise much more than we think. This man had the courage of his convictions and was brave enough to make the decision for himself. And that’s something I’ll never forget.’