One of the most disturbing places I’ve ever worked was a neonatal intensive care unit. Doctors fought valiantly to keep severely ill infants alive on high-tech machines, but often failed to do so. Babies, at the very beginning of their lives, faced their untimely ends.
The death of innocent newborns poses many questions of fairness and fate. Charlie Gard, the British infant now in the middle of a global political, religious and media maelstrom, is the latest child to draw attention to these questions.
He and his family have been through a torturous roller coaster involving doctors, judges and government officials. Unfortunately, Charlie’s doctors believe he will probably not survive his sickness, but his story forces us to address several bioethical issues concerning who should decide when a terminally ill patient dies, particularly when that patient cannot speak for him or herself. What should be done if the family and the doctors disagree? And what can be done to avoid such ordeals in the future?
Who is Charlie Gard?
Born on August 4, 2016, Charlie has a rare genetic condition, mitochondrial DNA depletion syndrome, in which mutations impair small structures within his cells that help him make energy. Charlie’s parents battled to keep him on life support at London’s Great Ormond Street Hospital, though expert doctors concluded that no treatment existed to help him recover.
In December, a US neurologist suggested that a new experimental compound might aid him. It had never been tried for this particular disease. Unfortunately, Charlie then developed severe seizures, evidence of severe brain disease, and his doctors concluded the experimental treatment would only prolong his suffering.
In February, the family nonetheless went to court to obtain permission to transfer him to the United States for treatment. But the US doctor conceded that Charlie’s brain was far more damaged than he had originally thought, and that improvement was “very unlikely.”
The judge ruled in April that the hospital could withdraw all but palliative care. The family appealed the decision in both the British court and at the European Court of Human Rights, yet lost both times.
The hospital planned to remove life support on June 30, but then agreed to delay doing so, and on July 2, the Pope argued that the parents should be allowed to “treat their child until the end.” On July 3, Donald Trump tweeted that “if we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.” A Vatican hospital in Rome offered to take Charlie, but the British government refused.
Sometimes death is inevitable
Futility is among the most difficult concepts in medicine to grasp and accept — the fact that at a certain point, doctors cannot eliminate or reduce disease and the prospect of death becomes inevitable. In short, the best we can do is to make patients comfortable.
This notion is hard for both doctors and patients — a physician I know refers to it as “the ‘F’ word.” When they can no longer prevent the onslaught of death, many doctors feel they have somehow failed. In increasingly competitive marketplaces for patients, much of medicine focuses on hope — and, at times, on hype.
Patients, not surprisingly, also look to physicians for clear benefits. Medicine has made enormous progress in recent decades. New drugs aid millions of patients with high blood pressure, high cholesterol, broken limbs and countless other ailments.
But sometimes, our arsenals are empty.
Still, all is not lost. To help countless other infants and others with disease, critical medical research is being done. In recent years, treatment of childhood cancers, including lymphomas, and infectious diseases have advanced enormously. In fact, 80% of children with cancer can now be cured.
President Trump has requested drastic 40% cuts in funding for medical research through the National Institutes of Health, whose budget has been decreasing in recent years. But if we really want to help children like Charlie, we need to support more, not less, scientific research.
It’s time to have the difficult conversation
Charlie also teaches us about the need to re-examine our attitudes toward death and dying. In the United States, we generally let patients and their families, rather than courts, decide when to terminate life-sustaining treatment. As such, many patients, families and doctors avoid facing the inevitable: that at a certain point, additional care will be futile.
But 83% of Americans do not have an advanced care directive or living will. Many of those who do have not discussed these with their families. Hence, when many of us become incapacitated and confront questions of whether to pursue heroic, but futile care, our families may agree to such treatment, rather than letting us die with dignity.
Charlie’s case should inspire us to think about what we would do if we faced such limited options for ourselves. In coming months and years, we will surely see more cases like Charlie’s concerning end-of-life care.
Charlie’s lifespan may be short, but the lessons his case teaches us may be a guide for the long term.
