There is a controversy going on in England over a child with a fatal disease. The child, Charlie Gard, was born with a mitochondrial disorder that causes brain damage and eventually death. He is currently on a respirator and his parents want to bring him to the U.S. for experimental treatment. The British health service (the NHS) has insisted that Charlie’s respirator be removed and that he be allowed to die, and they have denied his parents permission to take Charlie out of the country for treatment. British courts have sided with the NHS, and it appears that Charlie will soon be removed from the ventilator to die, against his family’s wishes.
There are complexities to the case from an ethical standpoint. All parties agree that due to his disease, Charlie has little to no chance of survival. His parents’ plea to take him abroad for treatment is a desperate one, and is highly unlikely to save his life. However, the parents are not asking the NHS to pay for the experimental care. They have raised funds privately. They are merely asking for the custody of their child so they may pursue treatment elsewhere.
Yet the NHS and the British courts refuse to release Charlie to his family, and the NHS plans to disconnect his respirator.
Here, in my view, are the ethical principles involved.
First, there is no ethical obligation to prolong the process of dying using heroic treatments. Removing a respirator from a dying patient with his/his family’s consent is perfectly ethical. I have complied with such requests from families many times, and I believe that for many dying patients removal of heroic care (such as ventilators, surgery, antibiotics, etc.) is appropriate and compassionate. I hope that my own family doesn’t put me through heroic treatments that will merely prolong my death when my time comes.
I make a clear distinction between heroic care and ordinary care. Ordinary care includes hydration, nourishment, clothing, shelter, and hygiene, and I believe that all people, including dying people, have a right to ordinary care. I would no sooner remove nourishment from a dying person than I would remove clothing or shelter from a dying person.
But I believe that removal of heroic extraordinary care can be ethical for the dying, if they or their family consent.
The problem with the NHS’s and the courts’ decision in Charlie’s case is that the decision to remove the ventilator is being forced on Charlie’s family, against their will. Decisions to remove heroic care from the dying can be ethical, but these decisions must be made by the patient or his family, not by the hospital or by the government. Final end-of-life decisions are personal and private, and are not the purview of the medical profession or of the government. It is the responsibility of medical professionals and the government to advise and support the terminally ill in accordance with their wishes, not to hasten their death.
And just a word on the notions of “quality of life” and “futility.” Both concepts seem central to ethical decision-making in terminal illness, but acceptance of these concepts runs great risks. “Quality of life” can mean different things: it can mean that a person is suffering, and it can mean that the person’s life is judged to be of lesser value than the lives of others. All too often an ethical statement that a person has a “poor quality of life” — which may be true in the sense that the person is suffering — is twisted to mean that a person’s life is intrinsically worth less than that of another person in better circumstances. “Poor quality of life” must never be intended or taken to mean that the life of the suffering person is of diminished value, or that their life may be extinguished because of its “poor quality.” The ethical standard in the West for the better part of 2000 years has been that the least among us — those who are dependent or suffering — deserve greater protection and care, not less. People with “poor quality of life” need help and care, not death.
The other term that can be misused is “medical futility.” It is a term employed to mean that further heroic treatment is unlikely to be of value to the patient, and in that sense it can be true. But “futility” should not be a basis for denying routine care — hydration, feeding, clothing, shelter, hygiene — to seriously or terminally ill persons. It may be futile to provide someone with another round of chemotherapy or with another operation, but it is not futile to feed someone who is dying.
In the de-Christianizing West, we are facing dangerous trends in medical ethics. The rising acceptance of euthanasia and the devaluation of the lives of disabled and dying persons is a manifestation of those trends. The behavior of the NHS and the British courts in the case of little Charlie Gard is emblematic of the growing disregard for the sanctity of life and the dignity of seriously ill people. End-of-life decisions should be left to the patient and his family, and it is the responsibility of the medical profession and the government to protect the dignity and the right to life of patients with terminal illnesses.
Photo credit: © kavzov — stock.adobe.com.