Warfare metaphors for illness can limit options
The recent news of Sen. John McCain’s brain cancer diagnosis and U.K. infant Charlie Gard’s death were discussed using the same metaphor: warfare. Former president Barack Obama tweeted, “John McCain is . . . one of the bravest fighters I’ve ever known” and Charlie Gard’s parents stated, “our son is an absolute warrior and we could not be prouder of him.”
This metaphor of battling illness is pernicious. If brain cancer kills McCain, will he be remembered as a failed fighter? If baby Charlie had “fought” harder, would he be alive?
The metaphor is particularly harmful when it encourages parents to battle their child’s health-care team.
The facts of Charlie’s case are clear. He showed signs of illness before reaching two months of age. He was referred to the renowned Great Ormond Street Hospital. The hospital admitted Charlie immediately and applied the best of modern pediatric practice. The medical team rapidly saved his life with a ventilator.
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 would almost certainly die soon. Meanwhile, 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 stimuli.
At Great Ormond Street, there would have been communication with Charlie’s parents about test results, diagnosis and outcomes. Given the severity of Charlie’s condition, longterm ventilation was not a humane option. The ethics committee agreed that palliative care was in Charlie’s best interest.
Such discussions happen daily between parents and clinicians because many children have conditions that cannot be treated effectively. Most parents accept this, focusing on making the child’s remaining time as comfortable as possible.
Such acceptance usually comes slowly and with great parental suffering, and sometimes with anger directed towards the messengers. Parents find comfort with support from friends, family, the wider community and the health-care professionals who are bound up in the child’s care. The common response to take refuge in the metaphor of “warfare” typically does not move beyond the use of words.
But in Charlie’s case, the “fighting” metaphor became reality, constraining the parents. Given that Charlie was a “warrior,” the parents saw their duty as being co-fighters with him. But who or what was the target of the warfare? A rare disease? The medical team?
Just when Charlie’s needs required collaborative efforts between his parents and the health-care team, the focus shifted to winning and losing. On the sidelines, alliances (including with the Vatican, the U.S. president, and the public) developed through mainstream and social media, encouraging conflict. The warfare moved into the legal arena, causing collaboration to disappear.
The ensuing media reports rarely focused on the principal issue: Charlie was very sick with a fatal disease. As in many battles, victory was central and the significance of Charlie’s suffering had all but disappeared.
Metaphors can encourage a distorted perception of reality. Regarding baby Charlie as a “warrior” led to a cascade of detrimental events.
Rather than using warfare metaphors, perhaps we can better address heartbreaking fatal diagnoses of children by having compassion for everyone involved.