The failure to distinguish medical from moral authority is the same overreach we witnessed during the pandemic.
The failure to distinguish medical from moral authority is the same overreach we witnessed during the pandemic.
N othing could have prepared Dean Gregory and Claire Staniforth for the devastating diagnosis they would receive on behalf of their infant daughter. Since her birth in February, Indi Gregory has been treated at the Queen’s Medical Centre in Nottingham, England, for an incurable and degenerative mitochondrial disease.
During her short life, the eight-month-old has experienced progressive brain damage. She has holes in the two main chambers of her heart and fluid in her brain. She’s had multiple surgeries and seizures, ten treatments of needles drilled into her bones, eight trips to intensive care, three cardiac arrests requiring CPR. She is on eight different medications for pain relief and has been on full life support (i.e., intubation and ventilation) since September.
The doctors have been saying for months that none of this is helping. In their professional judgment, it is in Indi’s best interests to be moved to palliative care, to be made as comfortable as possible, and to be allowed to die naturally in the company of her family in a medically controlled setting (either a hospital or hospice).
Indi’s parents strenuously disagree. They say that she brings great joy to her family and derives what pleasure she can from her surroundings. Last month, they argued that Indi does not show signs of serious pain but is stable and showing small signs of improving. They believe that the current degree of intervention may not be permanently necessary, that more time and investigation are needed to be sure of the cause of her condition and the best treatment going forward.
Sadly, Indi’s medical prognosis appears to be accurately characterized by her doctors; their ideas for treatment are sound. But there are two issues here. First, what is in Indi’s best interests. And second, who ultimately gets to decide, given that she cannot decide for herself.
The doctors may be better positioned to judge Indi’s physical condition. The judge and court-appointed guardian — a third party brought in when a child’s best interests are in dispute — may be more objective in their review of the facts. But clinical judgment should not be endowed with power of attorney. And medical expertise should not be taken to mean moral authority. Doctors can make recommendations. They can certainly refuse to do what they consider bad medical or ethical practice. But in the end, the patient — or, in this case, the patient’s family — must be free to go elsewhere.
Out of love and desperation, Indi’s parents wished to leave no stone unturned. After the U.K. High Court granted the hospital permission to remove Indi from life support, Indi’s parents secured a place for her at the Bambino Gesù children’s hospital in Rome, where doctors are willing and ready to receive her. But the judge intervened again to say she could not leave. The Italian government responded by granting Indi citizenship. On Wednesday, the judge stated in a new decision that “my decisions and orders are unaffected by this development.”
If a parent’s actions are endangering a child’s life, the state has a right to step in. But if a parent’s actions are endangering her death — or rather, the kind of death deemed most ideal from a medical standpoint, then it does not. Not least since doctors are neither medically nor morally infallible. (Consider, for instance, the clinical “advice” given to women whose unborn babies are predicted not to live past their first birthdays.)
The failure to distinguish medical from moral authority is the same overreach we witnessed during the pandemic, when family members were prevented from visiting their sick loved ones, resulting in countless people in hospital wards and nursing homes dying alone.
Indi Gregory is not the first critically ill patient to be claimed by the British medical and legal establishment, nor will she be the last. There was the case of Charlie Gard in 2017, and of Alfie Evans in 2018. Alfie, like Indi, was granted Italian citizenship but prevented from leaving the U.K.
Perhaps more disturbing still is the ongoing case of a critically ill 19-year-old in the U.K., who wishes to go to Canada for an experimental therapy she hopes might help her rare mitochondrial disease but was told by a judge that she does not have the capacity to make the decision for herself.
On Wednesday, Indi’s parents were denied their final request: to have her extubated at home. The judge explained that it would be “too dangerous” for Indi, exposing her to the risk of “complications and sudden agitation.” If that’s the case, why not let her go to Rome?
Doctors are entitled to act according to their best professional judgment. Sometimes palliative care, not life support, is the more appropriate course. But Indi’s doctors might have told her family, “We cannot do as you ask, for the reasons we’ve explained,” then let them leave at their own expense.
What is difficult to parse is the refusal to allow Indi’s parents to exercise their best judgment in taking their daughter elsewhere.