Reflections on the Charlie Gard Case

The legal battle over the treatment of Charlie Gard, a gravely ill baby in the United Kingdom, recently ended. Charlie’s parents, Chris Gard and Connie Yates, and the Great Ormond Street Hospital disagreed over whether to pursue an experimental medical treatment. The parents had wished to pursue the treatment, while the hospital wished to instead shut off the ventilator allowing Charlie to breathe. Charlie’s death was the likely result. Charlie’s parents gave up their efforts on July 24. Charlie’s condition had deteriorated too far for the treatment to offer them hope. The ventilator was withdrawn July 28, and Charlie died.

Charlie’s case attracted international attention and generated a surprising degree of controversy among pro-life opponents of euthanasia/assisted suicide, some of whom disagreed about the correct course of action in this situation (see the varying assessments of Jana BennettCharles CamosySimcha FisherAusten IvereighMichael Redinger, and the Anscombe Bioethics Centre). These differing opinions were understandable given the case’s complexity. My own judgment is that Charlie’s parents should have been allowed to pursue that experimental treatment. The right course of action was by no means obvious, however, and neither side was necessarily approaching Charlie’s treatment in a way pro-lifers should wholly support.

Charlie's Situation

Charlie’s medical situation was described in the first major court ruling on the case, on April 11. Charlie, born August 4, 2016, was diagnosed with infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). This condition is extremely rare: an expert said Charlie’s case is one of only six pediatric cases she’s encountered. Infant onset is still rarer. Charlie’s condition had left him without the ability to move his arms or legs, open his eyes, or breathe on his own. He was dependent on a ventilator to breathe, and was deaf. Tests didn’t show signs of responsiveness, interaction, or other normal brain activities. Charlie also began, to suffer from seizures, indicating brain function deterioration.

Charlie’s parents learned of nucleoside therapy from Dr. Michio Hirano, an American professor of neurology at Columbia University Medical Center. It’s apparently had some success with a related mitochondrial disease, TK2. Yet it’s never been tried on humans or animals with Charlie’s condition . Dr. Hirano  said it’s “very unlikely that [Charlie] will improve with that therapy.”

 

Moreover, Dr. Hirano and the expert representing the hospital agreed Charlie’s condition was likely terminal. Hirano commented “I think he is in the terminal stage of his illness. ” The hospital expert said Charlie’s seizures suggested death might be six to nine months away.

 

The court found in favor of the hospital’s  application to remove the artificial ventilation and provide palliative care only, with Charlie’s death likely to follow. Charlie’s parents continued their challenges through the British court system and to the European Court of Human Rights. The courts consistently found for  the hospital and against Charlie’s parents, before the parents finally gave up their legal efforts on July 24.

Principles for Defending Life

 

Appropriate pro-life principles should guide medical care for disabled or seriously ill people:

  1. Intentionally killing someone who is sick or disabled to end that person’s suffering constitutes euthanasia and must be rejected. Intentionally aiding someone in killing herself or himself out of the same motivation constitutes assisted suicide and must also be rejected.

  2. These types of killing can be direct, such as giving someone a lethal overdose, or can be more indirect: depriving someone of water or food, for example.

  3. Depriving someone of life-saving medical care can also be a form of euthanasia or assisted suicide.

  4. Preventing euthanasia or suicide by medical deprivation doesn’t mean patients must always pursue every possible treatment. Someone might justifiably refuse a treatment because it’s too painful, invasive, expensive, or has too little chance of benefit. A terminally ill patient might refuse a burdensome treatment that will only delay (now inevitable) death.

 

A Question of Intent

 

Given both Charlie’s condition and these principles, what would have been appropriate? Reasonable arguments could be made for different approaches. Because multiple doctors thought Charlie’s condition might be terminal and the therapy unlikely to work, foregoing the therapy and removing the ventilator could be justified: the therapy was futile and the ventilator merely delayed inevitable death, possibly causing Charlie pain. Nevertheless, an argument could be made for the opposite approach. While unlikely to work, nucleoside therapy doesn’t appear to be inherently inhumane or painful , and keeping Charlie on the ventilator long enough at least to try the therapy could be justified.

 

Another consideration is the question of intent. Regardless of which approach was adopted, what was the rationale? The question is important because of a subtle distinction in why certain medical decisions might be made. This distinction was highlighted by Charles Camosy, a theology professor at Fordham University and Consistent Life Network endorser. His analysis and the statement of the Anscombe Centre, a Catholic bioethics organization (cited above) both inform my comments below.

 

To decline further medical treatment or remove life-sustaining equipment because they’re burdensome to the patient and don’t offer enough benefit is an acceptable choice. What isn’t acceptable, however, is to do so because the patient’s life is judged, for whatever reason, to be no longer worth preserving.

This unacceptable approach to medical care is sometimes defended by use of that slippery phrase “quality of life.”

 

Judging a person’s life to be of such low quality as not to be worth maintaining is wrong. Such a rationale opens the door to lethal discrimination against people with chronic illness or severe disabilities. Someone’s life has value even if that person is immobile, dependent on machines, unconscious, or in pain. Withholding or withdrawing medical treatment because a person’s life is deemed not worth preserving would qualify as  euthanasia. Distinguishing between euthanasia and the legitimate refusal of burdensome or futile treatment, while difficult, is necessary.

 

Therefore, the April 11 ruling on Charlie’s case is disturbing. The judge, Mr. Justice Francis, cited previous court rulings. One held “it is not in the interests of the child to subject it to treatment which will cause it increased suffering and produce no commensurate benefit”—a reasonable stance. Another held the need to prolong life “may be outweighed if the pleasures and the quality of life are sufficiently small and the pain and suffering or other burdens of living are sufficiently great”—a far more problematic position

 

A doctor whose opinion on Charlie’s condition was solicited said, “sadly, Charlie’s life is therefore limited both in quality and quantity and there is no reasonable prospect for recovery.” Francis characterized the doctor’s opinion: “in his view, the severity of his condition is such that it could be argued that Charlie would derive no benefit from continued life.” A similar view came from the hospital’s recent statement: “since his brain became affected by [his particular condition], Charlie’s has been an existence devoid of all benefit and pleasure. If Charlie has had a relationship with the world around him since his best interests were determined, it has been one of suffering.” These statements raise serious concerns about whether the choice of foregoing therapy and removing Charlie’s ventilator was made for the right reasons.

 

What complicated matters further—and prevented this from being merely a contest between a “right” and “wrong” approach—was that Charlie’s parents appeared to accept the notion that his quality of life didn’t justify preserving his life. In the April 11 ruling, Chris Gard said “We would not fight for the quality of life he has now . . . We truly believe that these medicines will work. After three months we would want to see improvement and, if there wasn’t, we would let go. This is not the life we want for Charlie.” In the statement Charlie’s parents made announcing the end of their legal efforts, they commented “He still responds to us, even now, but after reviewing the recent muscle MRI it was considered that Charlie’s muscles have deteriorated to the extent that it is largely irreversible . . . Were treatment to work, his quality of life would now not be one which we would want for our precious little boy.”

 

While Charlie’s parents, the hospital staff, and the judge might simply have been imprecise in their language, these statements leave the impression that none of the parties involved approached Charlie’s case with entirely correct principles in mind.

 

Teaching about Respect for Life

 

If we grant that either pursuing nucleoside therapy or foregoing it and removing Charlie’s ventilator could be justified, then Charlie’s parents should have been permitted to decide. Their parental rights should have taken precedence if there were no clearer reasons to prefer one course of treatment over the other. By refusing the parent’s wishes even in the face of their legal challenges—and obvious emotional torment— the hospital acted wrongly.

 

Nevertheless, both Charlie’s parents and the hospital made statements suggesting neither were guided by respect for life regardless of disability or illness. To view the case as a clear-cut struggle between those who championed life and those who didn’t may be an oversimplification.

 

One important lesson may be that to prevent another Charlie Gard case, pro-lifers not only need to consider reforms of laws or hospital policies, but also clearer public education on what principles and approaches to medical treatment are consistent with respecting life.

A version of this essay previously appeared on the Consistent Life blog (http://consistent-life.org/blog/).

© 2017 John Whitehead. All rights reserved.