Charlie Gard and Exercises in Medical Futility


Since the time of Hippocrates, physicians have grappled with the issue of futile care. Medical futility is an ethical judgment of the potential for a therapeutic treatment to positively affect a seriously ill patient.

Two kinds of medical futility are often distinguished: Quantitative futility, where the likelihood that an intervention will benefit the patient is exceedingly poor, and Qualitative futility, where the quality of benefit an intervention will produce is exceedingly poor.

Both quantitative and qualitative futility refer to the prospect that a specific treatment will benefit (not simply have a physiological effect) on the patient. University of Washington School of Medicine

It is the issue at the heart of the case of Charlie Gard, an 11-month-old baby suffering from a rare degenerative brain disease called mitochondrial DNA depletion syndrome (MDDS).  Charlie is receiving care under the National Health Service (NHS) at the Great Ormond Street Hospital for Children (GOSH) in London. His plight has commanded the attention of Pope Francis, President Trump, and a vast international audience. Charlie’s story is summarized here.

Should doctors discontinue Charlie’s life-support system or should his parents be allowed to pursue a privately-funded, experimental treatment? The involvement of the NHS means a judge will make the final decision.

The legal statement presented by GOSH defending its position is very sobering. It illustrates a perspective on health care that is rapidly spreading throughout the world. As control of medical treatment is given over to governments and huge insurance companies, the definition of “significant benefit” is becoming vague. It is compromised by issues of cost-efficiency and increasingly secular attitudes regarding the intrinsic value of human life.  In many places, medical futility is becoming a common excuse for assisted suicide and euthanasia.

A Quality of Life

According to GOSH’s statement, qualitative futility is compelling the doctors to discontinue life support.

It … remains the unanimous view of all of those caring for Charlie…that withdrawal of ventilation and palliative care are all that the hospital can offer him…because…he has no quality of life and no real prospect of any quality of life. (Paragraph 14)

They emphasize that Charlie’s parents agree on this point. Mr. Gard did give evidence acknowledging, “[Charlie’s] not got a quality of life. I’m not going to stand here and say he’s fine.” However, he continued, “But that’s not what we’re fighting for. We’re fighting for a chance to give him the treatment that he needs to possibly improve.” (Paragraph 5)

Wesley Smith, writing for First Things, believes this is the worst problem with futile care.

[Futile care] authorizes doctors to refuse or withdraw wanted life-sustaining medical treatment over the objections of family and patients when [they] and/or a bioethics committee believe that the patient’s quality of life makes that life not worth living—or, lurking in the subtext, not worth the resources required to sustain it. [Moreover, a] patient’s decision—whether it be the desire of an infant patient’s guardians or written in an adult patient’s advance directive—matters less than institutional and professional opinions.

In countries where euthanasia and assisted suicide are legal, the efficacy of medical treatment is increasingly a judgment of value rather than of physiological outcome.  Initially, only those who had a terminal illness could be euthanized. Now, in the Netherlands, assisted suicide is offered to persons with non-life threatening conditions, such as mental illness, dementia, autism, and addictions to alcohol or drugs. Frequently, these patients choose euthanasia because the alternatives are perceived to offer only a minimal improvement to their quality of life.

Ordinary vs Extraordinary Intervention

The GOSH statement continues:

As to the disagreements [with Charlie’s parents], one is a difference of opinion about the risks, benefits and ethics of providing four compound nucleoside treatment for Charlie after a time when his brain had become profoundly affected by his genetic disease. (Paragraph 6)

The teachings of the Catholic Church regarding extraordinary medical intervention are stated in Evangelium Vitae (Paragraph 65) and the Catechism of the Catholic Church (Paragraph 2278). A patient may refuse, in good conscience, any medical treatments that are “particularly wearing and burdensome for the sick person, condemning him or her in fact to an artificially prolonged agony” (St. Pope John Paul II).

However, as is noted in the National Catholic Bioethics Center’s statement about the Gard situation,

[Paragraph 65 in Evangelium Vitae]  restates the Church’s position that disproportionate treatment is not obligatory; thus, an individual declining such a treatment on the grounds of its burdensomeness would not be committing suicide. [However,] Evangelium vitae does not argue that if a treatment is aggressive and disproportionate, there is an obligation to reject it. Nor does the encyclical reject the possibility of trying experimental treatments.

The Redefining of Basic Care

Unfortunately, around the world and, increasingly, in the United States, what was once available as basic care may now be considered excessive. In two reported cases in California and Oregon,   insurance companies denied patients chemotherapy and other potentially life-saving treatments, offering instead to pay for less expensive assisted suicide drugs.

Even the provision of hydration and nutrition are being called into question. In June, the Oregon state senate adopted a bill altering the state’s advance directive statute. The bill removed safeguards that guaranteed patients with dementia or mental illness would receive ordinary food and water when they are no longer competent to make decisions about their own care.  Furthermore, instead of electing on an advance directive to opt-out of receiving ordinary food and water, Oregonians will likely need to specifically opt-in to ensure they continue to receive essential nutrition.

Whose Decision Is It Anyway?

The second, and most chilling, disagreement between GOSH and Charlie’s parents pertains to who has the right to make the final decision. The GOSH statement phrases it this way:

Charlie’s parents fundamentally believe that they alone have the right to decide what treatment Charlie has and does not have… They believe that only they can and should speak for Charlie.

GOSH holds and is bound by different principles. A world where only parents speak and decide for children and where children have no separate identity or rights and no court to hear and protect them is far from the world in which GOSH treats its child patients.(Paragraphs 7-8)

The Catholic perspective on a patient’s autonomy is in stark contrast to this position. In both the Catechism as well as the Ethical and Religious Directives for Catholic Health Care Services, it is clear that “the free and informed judgment made by a competent adult patient [or their representative] concerning the use or withdrawal of life-sustaining procedures should always be respected and normally complied with” (59).

The primacy of the parents was emphasized in the statement made by Pope Francis as well.

The Holy Father follows with affection and emotion the case of little Charlie Gard and expresses his own closeness to his parents. For them he prays, hoping that their desire to accompany and care for their own child to the end is not ignored.

Pope Francis’ prayers will be needed. Victoria Butler-Cole is the state-sponsored lawyer who, by British law, represents Charlie’s “separate identity and rights” before the court.  It was just revealed that she heads a charity called Compassion in Dying that advocates legalizing assisted suicide in the UK.

Taking Futile Care to an Inevitable Conclusion

The latest euthanasia report from the Netherlands revealed that over 400 persons were “euthanized without their consent” in 2015, an increase of 100 people from their 2010 report. Again, the majority of these people did not have a terminal illness, but some other chronic condition which a third party determined made their life unbearable. Remarkably, there are advocates who don’t believe this compassionate policy goes far enough. They want to completely remove the necessity of having any medical condition, terminal or otherwise, to access assisted suicide.

A new bill called the  “Completed Life Law” is under consideration by the Dutch parliament. It would allow perfectly healthy people over the age of 75 to choose assisted suicide simply because they believe they’ve lived long enough. According to a Dutch MP, Alexander Pechtold, passing this bill would be “taking the next step for civilization.”

So Goes the United States?

It is an interesting coincidence that the story of Charlie Gard is emerging at the same time the United States is wrestling with its own health care issues.  The stalemate continues in Washington DC in efforts to repeal and/or replace Obamacare. Those who prefer to have the country adopt a European-style, single-payer system are gaining strong support.

But neither plan will succeed unless the United States clearly reaffirms its belief in the sanctity of human life from conception to natural death. To that end, Charlie’s case provides a glimmer of hope. In a bipartisan effort, Congress worked quickly to grant Charlie permanent US residency should his parents be permitted to bring him to this country for treatment. Perhaps this potentially life-saving gesture will spark renewed effort to make health care about hope and life rather than futility and death.

To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.                                                                                                            –Pope Francis, via Twitter @Pontifex, 6/30/17

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