The interpreter gets to me first, with a face grown pale with concern. In a quaking voice, she whispers, “Doctor, the children are asking me not to translate the word ‘cancer’ every time you say it.” Her expression leads me to wryly conclude her newcomer status. After all, doesn’t every clinic encounter that problem?
The well-groomed, elderly patient is seated in a wheelchair. Her forearm is plastered, a result of her latest fall when she tried to get to the bathroom in a hurry. Her rehabilitation has been hampered by a diagnosis of cognitive impairment, leading her doctors to back off. Then, she complains of abdominal pain and is unexpectedly diagnosed with widespread cancer. The son distracts his mother while the daughter engages me. “Please tell mum she has an ulcer.”
In my early years as an oncologist, my face would have revealed my incredulity, but after many of these requests I am more inscrutable.“She doesn’t have an ulcer”, I say gently.
The dread in her eyes makes me feel like the threat that I must represent to her family’s peace. Defeated, she switches places with her brother.
“In our culture, this is how it is”, he explains. “She has dementia, so what’s the point of burdening her even more?”
I hate my invidious position. “If she has severe dementia, she won’t understand me”, I reason with him. “I don’t want to upset you, but my duty is to your mother.”
The interpreter wheels her towards me and her children close in, as if poised to catch the grenade I am about to lob.
“How are you?”
“Quite well”, the patient says via the interpreter. “The arm hurts a bit but that’s to be expected.”
Her dementia can’t be too bad, I think. “My insides hurt sometimes”, she continues.
“Would you like to know why?” I keep my eye and my focus on my patient although I can sense the children’s discomfort.
She nods hopefully, or at least I think so. “You might remember you had some scans. Unfortunately, they found cancer.” ‘So, it is cancer? But they said the scans were normal.”
“Mother, you must not worry”, her son exhorts. “In our culture, we make peace with such things.”
Without batting an eyelid, she says, “Of course we do, son.”
Where I was expecting recriminations, this changes the tenor of the consultation. The tense knot in my stomach relaxes.
In the 1960s, 90 per cent of oncologists admitted they would not disclose a terminal cancer diagnosis to a patient. Twenty years later, 90 per cent said they would. Today, in the era of patient autonomy, full disclosure is painted as a moral absolute, but my experience has shown me a more nuanced reality. In many cultures, it is a filial duty to make medical decisions on behalf of a parent. Doctors might bypass a patient and speak first to adult children and patients willingly concede this onerous role to their children. Decisions about treatment are not solely about the individual but also the family unit. Sometimes I ask patients what’s important to them and they mean it when they say, “Whatever my family wants.” Then, just as I think I know a thing or two about cultural norms, I overstep the mark with someone else.
For doctors steeped in the teachings of western medicine, withholding a terminal diagnosis seems anathema but as the requests keep coming, I have learnt that my response needs to be as nuanced as the problem. First, doctors should not generalise based on culture, language or their own past experience. Second, it’s fine for patients to bypass the brutal details of their illness even if the evidence shows that they are not as traumatised by disclosure as we fear. Finally, we will never know what patients want if we fail to ask. We should assume nothing but respect an individual’s decision to know only so much. Navigating this fine line comprises the art of medicine.
“Mother, can we ask a few things?”
The patient waits outside while brother and sister pepper me with questions they have been too afraid to ask. We discuss the trajectory of her decline and what to look for. I watch as they shed their feelings of guilt and conflict and understand how their mother’s involvement will help them all plan ahead. Their vulnerability is replaced by a sense of empowerment and in leaving, they thank me for treating their mother with “unexpected kindness.” This coinage makes me a little wistful but remembering the family members who have thought otherwise, I am mostly relieved. Later, there is a knock on the door.
“I want to thank you for saving me.” I am about to dismiss the interpreter’s effusive praise when she continues, “We belong to the same community, we pray together. I felt caught between loyalties although I always knew my job was to be your interpreter.”
Her words remind me that the burden of non-disclosure isn’t carried by the doctor alone and we spend some time debriefing.
Disclosing a terminal diagnosis to the seemingly unwilling or unprepared may well be amongst the most difficult tasks doctors are called upon to do. It’s a hollow feeling to disappoint relatives but it feels even worse to hide the truth from the patient.
Often, there is one chance to get it right, and it ought to be the highest duty of medicine to sensitively encourage a conversation that holds so many consequences. But part of being a good doctor is accepting that a good patient doesn’t have to think like you.
As my patient deteriorates, her family is able to congregate openly, grieve together and find consolation together. The consultation comes full circle when the children reflect that the experience changed their view about disclosure but concede that in future, they might still find themselves at the same starting point. That’s okay, I say, thinking of Oscar Wilde’s wise words, “The truth is rarely pure and never simple.”
— Guardian News & Media Ltd
Ranjana Srivastava is a Guardian Australia columnist and oncologist.
