NOBODY wants to talk about death.
It is one of the few experiences we all share, yet it is perhaps the biggest of all taboos in our contemporary Western societies.
We work out at the gym, eat our organic veggies, spend way too much on miracle wrinkle creams, all in a vain attempt to deny the inevitable.
Too often, when those closer to the threshold than we are try to talk to us about their needs or fears, we respond with an attempt to jolly them out of such negativity.
“I don’t think I can go on,” I remember my beloved grandmother saying in her last weeks of life.
My autopilot began rallying the forces of positivity, preparing to tell her not to give up, that of course she could find the strength to continue.
Fortunately, my younger and wiser cousin spoke first, saying quietly: “You don’t have to, Gran”.
Research shows that doctors, too, struggle to have honest conversations with patients about death.
One study of around 1000 recent medical graduates in the US found that more than 99% experienced barriers in having end-of-life conversations with patients and 86% described this as “extremely challenging”.
The challenge was greater when the patient was from a different cultural background to their own, the doctors reported.
Of course, it’s not just the doctors. Patients and families may collude in moving the conversation away from difficult topics or in latching on to words like “treatment” or “better” to bolster unrealistic expectations.
One review of 65 advanced cancer studies found serious discrepancies between doctors’ and patients’ understanding of the likely prognosis.
Across studies, the patients were more optimistic than their doctors, often believing their cancer could be conquered and that palliative treatment might achieve a cure.
In one study of terminally ill patients with lung or colon cancer, for example, the patients deemed by their doctors to have less than a 10% chance of survival to 6 months overwhelmingly believed their prospects were much brighter.
Of 158 patients in this category, 117 believed they had a 75% or better chance of survival to 6 months and just seven held the same view as their physician.
We tend to see hope as a good thing, but unrealistic optimism can lead us to opt for intrusive, futile treatments or deny us the opportunity to prepare for an imminent death.
Our collective reluctance to talk about dying can also mean we fail to give those who are closest to it the support they need.
While some of us might persist with denial to the last, others, like my grandmother, may want to talk frankly with clinicians or family about what they are experiencing and what lies ahead.
UK palliative care physician Kathryn Mannix has devoted much of her career to such conversations, but it didn’t necessarily come naturally.
In a recent book, she writes of her shock as a young doctor at hearing a superior offer to describe to an anxious patient what dying would be like.
“If he describes what? I heard myself shriek in my head,” she writes.
The senior doctor went on to give his terminally ill patient a detailed account of the process of dying as he had observed it over years of practice: increasing tiredness, more time spent sleeping, a drift into unconsciousness, followed by altered respiratory rhythms until the breath finally stopped.
“No sudden rush of pain at the end. No feeling of fading away. No panic. Just very peaceful …” he told the reassured patient.
Amazed that it was possible to be this honest with patients, the young Dr Mannix hastily abandoned her “ill-conceived beliefs about what people can bear”.
We would all benefit from reclaiming the language of dying, she argues, from abandoning euphemism in favour of greater openness about what death actually involves.
“In the generations of humanity before dying was hijacked into hospitals, the process was common knowledge and had been seen many times by anyone who lived into their 30s or 40s,” she writes.
“The art of dying has become a forgotten wisdom, but every deathbed is an opportunity to restore that wisdom to those who will live, to benefit from it as they face other deaths in the future, including their own.”
Jane McCredie is a health and science writer based in Sydney.
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