An attentive world is watching, aghast, at the troubling tug-of-war over a terminally ill baby boy in a London hospital. On one side are the distraught and devoted parents who want to shoulder the cost of a treatment that reportedly has little chance of success. On the other side is a medical and state bureaucracy that is insisting, instead, on turning off the baby’s ventilator and allowing him to die.
The case of Charlie Gard is creating anxiety for spectators everywhere as they observe the locus of control over difficult end-of-life decisions pass from the intimate family and doctor unit to an impersonal and distant state.
In watching Charlie’s case we learn that with government-run or socialized medicine, not only can the state refuse to provide life-extending care, it can deny us the freedom to pay for it ourselves, to leave the country seeking an alternative treatment and even to go home to die.
Now this is not, as some thoughtful commentators have rightfully observed, an instance of the state demanding euthanasia. Removing the baby’s ventilator will cause him to die naturally, and mechanical ventilation, unlike hydration and tube feedings, is typically considered an extraordinary measure that is not ethically obligatory when all hope for a cure is gone.
And yet, these same commentators seem to have a touching faith in the ability of distant courts and hospital ethics boards to choose what surely everyone desires for themselves and their loved ones: A course of action that errs on the side of hope and life.
But it’s impossible to share that faith when in Europe (further along in applying a utilitarian view of life than the United States), hospitals in countries like Belgium increasingly perform involuntary euthanasia, the unethical practice that errs on the side of death and hopelessness.
The traditional approach to end-of-life issues in Western medicine, which most American physicians and patients would like to preserve, is that decisions like pursuing another course of chemo, continuing life support or seeking slim-hope treatments should be left to the judgment of the patient or the patient’s proxies. This is especially the case when the patient is not in great pain and will not be gravely harmed by further interventions, and it is most relevant when the patient is a child, as children have a remarkable capacity for healing and recuperation.
Of course, there is the very real and human problem of denial in the face of painful realities. Sometimes, we struggle to “let go.” Sometimes, out of fear of death and separation, we grasp at straws, refuse to accept the inevitable, and prolong an already painful process.
Many of us have seen situations where a terminal diagnosis is rejected by loving family members who demand yet another round of punishing chemotherapy, even if the patient has accepted their fate and is prepared to part in peace. This problem is exacerbated by an increasingly secular culture that has largely lost faith in a loving providence and the hope of meeting beloved ones in heaven.
Physicians and nurses who accompany patients and their families at the end of life know that they are going through a difficult process that requires gentle explanations, patience and compassion. Every individual and family moves at a different pace along the painful path of accepting death. In the most humane and least traumatic scenario, an intimate relationship between the suffering and their caregivers enables the patient “to go gently into that good night” without unseemly haste and certainly without force.
But in the case of baby Charlie, we are confronted by the sight of the mighty state using force, choosing the exact moment when the ventilator is removed and the baby will suffocate. And this is despite the fact that the boy’s miserable mother and father are not even asking for state funds to keep their child alive. As they said, “We’ve … never asked the hospital, courts, or anyone for anything, only permission to go.” Such use of force is so disturbing it can create a sense of trauma felt by complete strangers across the world.
It may very well be that the treatment his parents so desperately desire for him cannot or will not help Charlie Gard. Nevertheless, millions of people across the world are rooting for Charlie, hoping he gets the chance to at least try. This baby boy has become an icon in the battle to keep our end-of-life path grounded in the appreciation of the great value of each human life. So may it be that the tug-of-war ends such that he, and everyone else, is kept far away from the soulless, utilitarian grasp of bureaucracy, and is instead allowed to be supported by the compassionate care of doctors and the love and devotion of family.