Battle Is Poor Metaphor for Disease

By Mitchell, Ian; Guichon, Juliet | Winnipeg Free Press, August 18, 2017 | Go to article overview

Battle Is Poor Metaphor for Disease


Mitchell, Ian, Guichon, Juliet, Winnipeg Free Press


The metaphor of battling illness is common but pernicious.

The recent news of U.S. Sen. John McCain’s brain cancer diagnosis and U.K. infant Charlie Gard’s death were discussed using the same metaphor — warfare. Former U.S. president Barack Obama tweeted, “John McCain is... one of the bravest fighters I’ve ever known” and Charlie’s parents stated, “our son is an absolute WARRIOR and we could not be prouder of him.”

If brain cancer kills McCain, will he be remembered as a failed fighter? If Charlie had “fought” harder, would he now be alive?

The battle metaphor is particularly harmful when it encourages parents to battle their child’s health-care team despite the child’s life-ending condition.

The facts of Charlie’s case are clear.

Charlie showed signs of illness before reaching two months of age. He was referred to the Great Ormond Street Hospital, a renowned institution that has been at the forefront of pediatric practice for almost two centuries. The hospital admitted Charlie immediately and applied the best of modern pediatric practice. The medical team rapidly saved his life with a ventilator that breathed for him. Many ventilated infants will make some effort to breathe. Unusually, and soon after admission, Charlie had “no spontaneous respiratory efforts.”

There followed another facet of best modern pediatric practice — intense and rapid investigations. These included advanced genetic testing, which yielded a diagnosis: the very rare mitochondrial DNA depletion syndrome. This diagnosis meant Charlie almost certainly would die in the near future.

Meanwhile, his condition was deteriorating. Charlie’s muscle weakness, which prevented him from breathing on his own, became so profound he could not open his eyelids. He had almost total hearing loss and was unresponsive to any normal stimuli.

Behind the scenes at Great Ormond Street, there would have been intense communication with Charlie’s parents about test results, the diagnosis and likely outcomes. Given the increasing severity of Charlie’s condition, and then the onset of intractable seizures, long-term ventilation was not a humane option. The ethics committee, an intermediary to help all parties in this difficult situation, agreed palliative care was in Charlie’s best interest.

Sadly, such discussions happen daily between parents and clinicians because many children have conditions the best practice still can’t treat effectively. …

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