Doing the right thing
The ethical dilemmas of medicine
Nineteen years old, crawling through a BA, and I’m sitting in a crowded theatre listening to the hippest philosophy lecturer on campus. She looked like a sexy elf: tiny, with burlesque-red lips and hands that illustrated every sentence with curlicues. We were all in love with her, a feeling intensified by the subject matter: philosophy and the body. Philosophy at the time was all postmodernism, late-wave feminism and psychoanalysis; as promised, this subject took us through those fun parks, but only after we’d endured a month of bloody Maurice Merleau-Ponty.
Philosophy seemed like a terrifyingly attractive secret-knowledge club: a guide to life, written over thousands of years. But where to start? The guy who’d broken my heart the year before had been a big Nietzsche fan. He had the T-shirt and everything. It was a major part of his allure.
Later, in med school, I didn’t get to choose subjects. One of the things I had to study was bioethics: a kind of applied philosophy for future doctors, and a nice reprieve from biochemistry. There was no mention of the self as an “intersubjective field”, nor the “noetic-noematic experience”. We did bioethics to learn the rules of good doctorly behaviour. And, according to our lecturer, we’d fly through the exam, and practise sound medicine, if we simply remembered the four foundational principles: autonomy, beneficence, non-maleficence and justice. Roughly translated, they suggested you respect your patient’s wishes, do good without causing harm and give a thought to greater society.
Last year, my registrar took me to meet Thomas, 70, who had a rare, untreatable and very advanced neurodegenerative disease. He was an emaciated, non-communicative man, whose paralysed body was irreversibly fixed into a foetal position. “He’s been like this for years,” said the registrar. His sons had brought him in because he had recently stopped eating and drinking. “The son wants us to give him IV fluids!” the registrar exclaimed. “But I thought that was inappropriate.”
On examination he occasionally made eye contact, at random, the same way he made eye contact with the curtains and wall. The only sign of distress – indeed the only response at all – was a grimace when I tried to extend his limbs. I checked the bloods, which indicated nothing except mild dehydration. The sons were returning mid-morning for a family meeting. I was fairly certain that the correct course of action was to do nothing beyond gently explaining that it was time to let Thomas die. If this were an exam question, that would be the correct answer. You could argue your case by invoking any of the four principles.
It’s not uncommon to have a dying patient surrounded by a family that is begging you to keep them alive. We’d never have been given this as an exam question, but let’s say the patient has an overwhelming pneumonia, can’t speak, and their dutifully prepared advance-care plan doesn’t cover this particular situation. The basic questions running through a clinician’s mind might go something like this: Is this problem reversible? Is the patient suffering? If both answers are no, the clinician might still give them a day or two of antibiotics to – as we say – “treat the family”.
What if the family is divided? What if they ask for treatment withdrawal even though the patient is improving? What if the patient refuses to leave? What if – and this happened to me earlier this year – you walk into the room and a daughter is spooning yoghurt into her comatose, dying mother’s vagina, “to treat the thrush you’ve been ignoring”? Or – this one was last year – a father is delivering his son a daily whack of heroin?
If you’re really tangled up in a mess of gut feelings and moral terror, you can always call the hospital’s ethics panel, but they won’t make your decision for you. I once heard two senior doctors complain that involving the ethicists only made situations more complicated. (“We go to them for answers, and all we get are more questions!”) Autonomy – the fundamental principle, one based on the Enlightenment concept of pure, free-willed, wholly separate individuals – develops all kinds of kinks in real life: delirium, misunderstanding, fear and denial; the beliefs and concerns of the patient’s loved (and unloved) ones; the beliefs and concerns of the clinical mob; cultural contexts; resource constraints. In practice, autonomy is more talisman than principle. You can use it as a shield – that is, if you’re planning to go into battle.
Thomas was home by the end of the week, after we’d inserted a nasogastric tube, taught his sons how to use it and set them up with a supply of the thin, milky feeds. Appalled? At face value, this contravenes every one of those foundational principles of bioethics. But the situation was complicated. Thomas’ wife was a nurse and had been diligently tending to her husband for years, feeding him with a syringe, occasionally hooking up IV fluids if the weather was blistering. She deeply believed this to be her responsibility. A fortnight before his arrival on my ward, she’d broken her hip, and as a result was mildly confused and in rehab for four weeks. “Please,” the sons had begged and wept later that first morning. “Please don’t let him die before our mother gets home … She’ll blame us. She’ll say we killed him.”
Who to protect? Who to respect? Whose pain to treat? Ethically sound courses of action can traverse multiple, sometimes conflicting, universes. The “right” answer can’t be found in a book, or in an expert panel or reference to an apparently “universal” principle of conduct. Throw a bunch of humans together – one of them sick, one of them powerful, a few on the periphery with acres of skin in the game – and, well, it’s probably best to leave moral certainty at the door.