“Doctor, be straight with me. It’s not looking good, is it?”
The question catches me unawares. Worse, on an unexpected phone call the body language is lost. Is she asking me this while preparing dinner or are her knuckles white with fear? Is this something she has been meaning to ask or a spur-of-the-moment dread escaped in words?
Her husband has gone from well to ill in a matter of weeks, the halcyon years of remission ending with a vengeance that surprised everyone. A hospital admission was meant to be reassuring – an opportunity to collect all the necessary information and get on with the job of treatment.
The modern era of cancer is flush with options. New drugs that work in new ways constantly surprise us. He entered hospital with complete faith in this clever science; alas, old complications tripped him up. A blood clot, an infected intravenous site, antibiotic-related diarrhoea, resulting in a series of admissions, each one more exhausting.
She is incredulous that the ambulance deposits him at a different hospital each time and that the same story recounted to different doctors yields different conclusions that compromise his care. Wherever he is, she sits by his bedside, pretending to read but all the while taking note of the inconsistencies and the missed opportunities while the best I can do is talk to his doctors to keep up with events.
Finally, her deference vanquished by mounting concern, she calls me on the day when he has finally received a dose of chemotherapy to stem further decline. He is relieved but she doesn’t like what she sees.
“I want you to tell me if he hasn’t got long.”
I think of the two easy answers.
The first one is: “I don’t know.”
While families are resigned to this declaration, it can sometimes feel like an excuse. Prognostication is not an exact science, but patients deserve nuanced and sensitive conversations about what to expect, given what we know at the time. They are more forgiving of uncertainty than we give them credit for; what they dislike is a wall of silence.
I know that his cancer is aggressive, and his numbers worrying. The bit I don’t know is how he will respond to treatment that has only just begun. Experience tempers both exuberance and pessimism. I have seen patients given “no chance” outlive their prognosis and seemingly robust patients spiral into decline.
The second answer is: “I can’t tell you.”
This response would respect patient autonomy – “nothing about me without me”, requiring me to seek his permission to talk to his wife in his absence.
Since his recurrence, he has asked many questions but none about what it means for his longevity. When patients are occupied by their immediate problems such as pain or fatigue, they sometimes don’t have the headspace to tackle the bigger questions, but it doesn’t mean they won’t eventually, so I am reluctant to press him with more information (or decisions) before he is ready. So while consent is important, in the current circumstances, this approach would strike me as problematic.
Sometimes scans look bad but the patient is well. Other times the patient looks worse than the scan. In this case, both patient and scans are a worry. A treatment that works can quickly reverse things but if it fails, each consecutive drug offers less benefit.
While I mull over things, I ask her to tell me a bit more about her concerns. She explains that if he is dying, she needs months to organise visas for the relatives who live overseas. And then there is the matter of preparing their children, young adults having grown up with that peculiar, developed-world privilege of never having witnessed death at close quarters.
As she continues, I appreciate her pragmatism and realise that I cannot leave her hanging on threadbare information.
I tell her that while I share her worry, it would be unfair at this early juncture to quote an average survival time because that’s exactly what it is, an average that is hard to apply to an individual patient. But I acknowledge uncertainty and how unsettling it feels and tell her that my best advice is to hope for the best and prepare for worse.
While patients and loved ones assume that only doctors can predict decline, the signs of illness are evident. Patients who respond to treatment generally feel better. They regain some of their energy and interests and notice progressive improvement or at least a stabilisation of their symptoms. Yes, some patients are surprised by bad news but far more of them know before the tests reveal that they are not thriving.
The assertion of “I know my body” can elicit groans from doctors in an era of florid misinformation that pits patient “research” against professional opinion. But for every hypochondriac, there is also a Hilary Mantel, whose debilitating symptoms were long dismissed by her doctors.
I reassure her that whatever else happens, I will listen closely to him and invite her opinion to make shared decisions. I will leave no stone unturned in the quest to keep him well. And if there comes a time when I am genuinely fearful for his life, I will tell them and ensure they have the supports they need.
All in due course: at a stressful time, this seems so generic and so paltry that her gratitude and easiness surprise me. Until it dawns on me that her actual question was not about prognosis as much as a plea for connection. The first can fluster doctors but the second is an opportunity to give meaning to human suffering.
Happily, he responds very well to chemotherapy and is back on his feet – the conversation about prognosis still important but not urgent. When we next meet, she reflects that in those dreadful early days, she needed reassurance that I would be both physician and human being, considering myself as vulnerable to life’s vicissitudes as the next person and hence willing to go beyond prescribing the next drug.
I tell them how genuinely gratifying it is for providers to see sick patients become well again. And as I walk them out, I remind myself that in testing times, there is more than one way of applying medicine’s oldest tenet – first, do no harm.
• Ranjana Srivastava is an Australian oncologist, award-winning author and Fulbright scholar. Her latest book is called A Better Death
