“I think you will need some chemotherapy soon,” I say gently. I’m painfully aware of the tsunami of emotions this will provoke. Chemotherapy patients have many worries, notably how it will make them feel and how much of their time will sink into travelling and waiting.
Every day I have conversations about chemotherapy that involve a balance sheet of risk and benefit, with the hope of convincing myself and my patients that the ledger lies in their favour. But my recommendations are in the end just that, because no can say with certainty that this chemotherapy will help that patient in exactly the way the studies claim. Maybe this is nature’s way of keeping oncologists humble.
The truth is that chemotherapy is a tricky thing that I prescribe, and the patient undertakes. We are in it together, I say, but this sounds glib because what really happens is that I watch from the sidelines and do my best to avert tragedy. I don’t want the “we” to sound fake, but I don’t want the “you” to be lonesome. And ultimately, it is through being inclusive that doctors learn what really matters to their patients.
“Let me walk you through what chemotherapy involves”, I offer.
“Will I lose my hair?” my patient stammers, and catches me by surprise because it’s not the first thing people usually ask. Her hands clasp her hair and the tears start welling, which transports me to an early experience in my training when a woman was threatening to walk out.
“She doesn’t want to lose her hair,” I relayed to the consultant. “What should I do?”
He leaned back in his chair and rolled his eyes. “Well, she can die with good hair then.”
He was exasperated but the remark was not worth repeating to the patient. I failed in my negotiations and never saw her again. Much later, I realised I had tried to use intellect to bulldoze through sentiment. Countering her grief with images of wigs and scarves and, desperately, cancer recurrence rates was never going to work. But back then, that’s all I had – earnest facts and figures to combat existential dread.
When younger, I was sometimes incredulous that patients could really choose preserving hair over longevity or favour supportive care instead of active treatment, even if the chance of success was small. But the older I grow, the more I understand that the most consequential decisions we make in life are rarely binary. It has taken ageing parents, dependent children and the cumulative experience of thousands of patients navigating enormous challenges to realise this obvious truth.
I now know that patients can lose their hair and still succumb to disease. People who brave the same treatment can have entirely different outcomes. Those who elevate quality of life over a drawn-out, painful existence are being courageous, not defeatist. And when suffering patients say, “I might as well die”, they are not always depressed but have assessed their life thoroughly and concluded that their best days are past.
The invincibility and impatience of youth has been slowly but surely replaced by a deeper understanding of what patients mean when they say they don’t want to lose their hair, don’t want to go to hospital and will never undergo another surgery. Now, my response is no longer ‘“Why not?” but “Tell me more”. This single phrase, more than any other, has opened up world views that I may not necessarily agree with but which nonetheless illuminate my thinking.
Each year, a few patients reject conventional treatment with a staunch belief in alternative therapies which range from being decidedly odd to downright deadly. (Once, a patient insisted it wasn’t chemotherapy but an anticancer powder working its magic and urged me to become an agent. The only reply she’d accept is that the hospital wouldn’t allow it.) A few patients are permanently conflicted, seek opinions that never satisfy them and make unreasonable demands on the energies of staff. The issues vary but if there is a constant, it is the presence of fear. People behave in seemingly irrational ways under the influence of fear. The fear of complications; the fear of the unknown; the fear of dying.
When the philosopher Seneca observed, “They lose the day in expectation of the night and the night in fear of the dawn”, he might well have been talking about many of my patients. But medical training doesn’t really teach us to be comfortable around the fears of patients. Much easier to ignore or discount something than try to understand it. Except in medicine it makes for unsatisfactory care and unpleasant memories.
Once a patient flatly refused to have his diabetic foot amputated, frustrating his doctors. In response to the text-book arguments about the dangers, he shrugged, “I really like my foot.” It was as poignant a reason as I ever heard. At 90, he was afraid of being sent to a nursing home minus his foot but would willingly submit to sepsis. Eliciting this fear made the difference between treating him with compassion and labelling him obstinate.
Having seen enough such incidents, I am determined to not lose another patient over an argument about hair.
“I can tell your hair really matters to you,” I offer. “I am going to think of options.” Her whole body relaxes as if I have promised her the world, although I have not.
I ask her son to help me understand her distress. It’s not vanity, he thoughtfully explains. She is a widow. Most of her friends don’t know her longstanding diagnosis and she fears they may judge her if they do. If not, they may still talk about her, and she seeks friendship, not pity. Now, what seemed a whim assumes a whole new significance.
From a purely medical standpoint it may be dispensable, but to my patient the loss of a beautiful head of hair signals the loss of life as she knows it, the beginning of the great unravelling. When the hair on the floor reminds you of your mortality, it mustn’t be so easy to sweep it up.
Slowly, the factual points I had marshalled take a back seat as I see that what she needs most is empathy and time to figure out her own mind. Maybe she will delay the chemotherapy and keep her hair. Or lose her hair but also her peace. Maybe she will regret the hair loss and curse the day she agreed to it, or maybe she will acquire a colourful scarf and say it was “worth it”.
The truth is, I don’t know and won’t pretend to know. These are some of the hardest decision points in medicine. The only assurance I can offer is that I will respect her choice, noting that while I may be the doctor, she knows herself best.
• Ranjana Srivastava is an Australian oncologist, award-winning author and Fulbright scholar. Her latest book is called A Better Death