bioethics, pop culture

Charlie Gard: Right Verdict, Wrong Methodology

Charlie Gard was born August, 2016, with a rare genetic disorder called mitochondrial DNA depletion syndrome. Charlie’s rare genetic mutation has affected about 20 people in the world and has a very poor prognosis. Mitochondria are known as the “powerhouse of the cell”.Without them performing as needed, a person will have muscle weakness, respiratory failure, brain damage, and ultimately death in early childhood.

Charlie has slowly succumb to the disease and has been hospitalized since October, 2016. His parents, Chris Gard and Connie Yates, have appealed to take their son home and bring him to the United States for treatment after Charlie’s doctors have declared him terminal and want to remove life support (his ventilator which controls his breathing). Charlie’s parents appealed to multiple courts with their final hearing at the European Court of Human Rights. However, the European Court of Human Rights declared Tuesday, June 27th, that the Great Ormond Street Hospital for Children in London can remove life support.

Before we dive into the ethics surrounding this case, let us take a moment to pray for Charlie, Chris, and Connie, who are undoubtedly suffering immensely during this difficult time. Let us pray for his doctors, nurses, respiratory therapists, pharmacists, PTs, OTs, case managers, social works, chaplains, and anyone else who was involved in his care and came to care for Charlie and desire what they think is best for him. Let us pray for Charlie’s family and friends of the family as they grieve.

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Obviously, living in the United States, not taking care of Charlie, knowing the full story, and coming in with a particular experience with medical futility, my opinion may be inherently biased. I have no doubt this case has been extraordinarily difficult for the courts and medical staff as well, though I cannot imagine the difficulty this has been for Charlie’s parents. However, I cannot keep my opinions to myself.

As Charlie’s case has progressed, commentators have swooped in written their opinions.

  • Julian Savulescu, Australian philosopher and bioethicist: “The judgement thus seems to assume that a life with severe cognitive impairment is a life which is not worth living. “
  • Dr. Melissa Moschella, a Catholic University of America philosophy professor: “It’s the same ideology that underlies allowing euthanasia or physician assisted suicide.”
  • Matt Walsh, American conservative columnist: “Courts in Europe have sentenced a baby to death.”

Well, that last one is more than a bit harsh.

From what a brief round-up of the interwebs has shown me, a lot of what people are arguing about Charlie is is his quality of life and that the decision to withdraw his ventilator is based on this methodology.

However, as the domestic court declared:

“The domestic courts concluded that it would be lawful for the hospital to withdraw life sustaining treatment because it was likely that Charlie would suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement, and the experimental therapy would be of no effective benefit.”

Charlie’s cause ought not to be compared to Terri Schiavo who was in a vegetative state and died in 2005 after her feeding tube was removed after a long legal battle between her husband and her parents. Why? Simply put, their cases are the difference between ordinary and extraordinary means.

In the encyclical Evangelium Vitae, the last formal document written by a pope about bioethics, St. Pope John Paul II wrote,

“Certainly there is a moral obligation to care for oneself and to allow oneself to be cared for, but this duty must take account of concrete circumstances. It needs to be determined whether the means of treatment available are objectively proportionate to the prospects for improvement. To forego extraordinary or disproportionate means is not the equivalent of suicide or euthanasia; it rather expresses acceptance of the human condition in the face of death” (65).

Ordinary or proportionate means are those procedures and goods owed to every person because of their innate dignity and worth as a child of God. As the United States Conference of Catholic Bishops wrote in the Ethical and Religious Directives for Catholic Health Care Services (aka the document that guides ethical medical practice for Catholics in the United States):

“A person has a moral obligation to use ordinary or proportionate means of preserving his or her life. Proportionate means are those that in the judgment of the patient offer a reasonable hope of benefit and do not entail an excessive burden or impose excessive expense on the family or the community” (56, citing aforementioned EV 65).

My favorite definition of ordinary care comes from bioethicists Germain Grisez and Joseph M. Boyle in Life and Death With Liberty and Justice: A Contribution to the Euthanasia Debate,

“[Ordinary means] includes those thing patients would do for themselves if the strength and will to act were not absent; in the case of infants it includes those things which a mother would do for her child. Thus nurses see to it that their patients are fed, kept clean, kept warm, changed in position from time to time, and so on.”

Ordinary care is like what a mother would do for her child. Since each one of us is a child of God, we ought to care for others as a mother would for her child. By the same token, we ought to be cared for as a child is cared for by his mother. Being fed, bathed, and cared for is owed to every person.

This is why the Catholic Church opposed Terri Schiavo’s death. She died not due to her underlying medical condition but because of starvation and dehydration. She was denied ordinary means of care, which is immoral and wrong.

However, in the case of Charlie Gard, when his ventilator is removed, he will die of complications due to his genetic disorder. He is being denied an extraordinary means of care, which in particular circumstances can be a moral and right decision.

So, is it the right decision?

An ordinary means again is one that “in the judgment of the patient offer a reasonable hope of benefit and do not entail an excessive burden or impose excessive expense on the family or the community” (ERD, 56).

Since Charlie is a brain damaged 10-month old, he cannot make decisions for himself. The first people to make decisions for him are his parents, but the medical team also has a moral responsibility in caring for an incapicated person.

As Grisez and Boyle write in Life and Death With Liberty and Justice,

“The basic requirement of justice with respect to care for noncompetent persons is easy enough to state: The noncompetent person ought not to be denied that care which any reasonable person who was competent probably would desire in similar circumstances, and the noncompetent person ought not to be given care which any reasonable person would refuse in a like case. The factor of noncompetence as such simply is irrelevant to one’s need for care and the duty of other to provide it. If this factor is taken as an excuse to treat noncompetent persons otherwise than they would be treated if they were competent, an injustice is done.”

The medical team must have reached a point where the individuals concluded they would not want the care Charlie was receiving. He is being kept alive because of a ventilator, and his parents are wanting everything possible (including extraordinary means) to be done. The doctors were acting out of justice when they wanted Charlie’s ventilator to be removed because the ventilator no longer offered “a reasonable hope of benefit.”

Obviously, we ought to care for people despite the cost. That’s why EMTALA and other laws exist so people are not turned away from lifesaving care based on their ability to pay. But healthcare costs money. Months in an ICU is not inexpensive, and Charlie’s care likely will “entail an excessive burden or impose excessive expense on the family or the community.”

His case meets the requirements of extraordinary or disproportionate means, which are “those that in the patient’s judgment do not offer a reasonable hope of benefit or entail an excessive burden, or impose excessive expense on the family or the community” (ERD, 57). Since Charlie cannot make decisions for himself, it is up to the family to make decisions and if the family is unable to make just decisions, it is the responsibility of the medical team.

Such was the case of Catherine F. Gilgunn in 1989. Mrs. Gillgunn was an elderly woman on life support who died after her doctors removed her ventilator against the wishes of her daughter Joan after the ventilator was deemed futile and her case terminal. They case went to  court because her daughter accused the doctors of killing her mother.  The court ruled with the physicians saying futile care is not a legal obligation.

Futile care is not a moral obligation either. As stated in the Catholic document Declaration on Euthanasia,

“it is permitted in conscience to take the decision to refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted.”

Apparently the hospital is refusing to allow Chris and Connie to take Charlie home, but I hope they are giving him all the ordinary, basic care he deserves like being bathed and being kept warm.

Medical futility is an ill-defined concept, but we all must acknowledge that medicine has its inherent limits. Dr. Kasman wrote a helpful guide for providers called, “When is medical treatment futile?” According to Lawrence J. Schneiderman, Nancy S. Jecker, and Albert R. Jonsen in the article “Medical futility: its meaning and ethical implications,” futile care can be defined in two ways :

  • Quantitatively, an intervention whose likelihood of success is equal to that of chance or a placebo intervention is considered medically futile.
  • Qualitatively, medically futile interventions are those that are overall nonbeneficial to a patient.

Charlie’s case met both criteria. The experimental treatment his parents wanted has little to no chance of success, and overall, his care is nonbeneficial and even harmful to him.

Medical providers ought to refuse to offer futile care because it harms patients. It is an act of injustice to knowingly offer a treatment that will likely harm a person more than it helps them.

The only reason I can be comfortable hurting a patient with a needle is knowing the good that will come from understanding their metabolic state from lab work, the relief from various mediations, and the security in having a line in case he or she acutely decompensates. On the other hand, this is why I am so uncomfortable performing CPR on a terminal patient: I know I am doing more harm than good.

Being forced to provide invasive care when it does not do enough good to justify the maleficent means hurts medical providers. It’s not talked about, but performing futile destroys us on the inside. If it doesn’t, it usually means we’re so burnt out we can barely feel anything anymore. I have cried multiple times over performing futile care. It hurts to know I am hurting someone without reasonable benefit.

So, is the decision to remove Charlie’s ventilator the right decision?

I say yes.

From all the facts I have read about this case, I agree with the courts. Charlie is not being sentenced to death. He is terminal and ultimately dying of his disease. It is horribly heart wrenching that a boy this small and innocent will die of an incurable disease, but it is a fact we cannot avoid with many more months of futile medical care.

As Archbishop Peter Smith wrote on behalf of the Catholic Church in England and Wales,

“The tragic situation of baby Charlie Gard is truly heartrending, not least, of course, for his parents and family. Those responsible for his medical care in the UK believe they have done all they can to help him. It is completely understandable, nonetheless, that his parents should also want to pursue every possible chance of extending his life, even when this carries no guarantee of success and would require transfer to the United States. In this, both sides are seeking to act with integrity and for Charlie’s good as they see it. Parental love will so often want to take every possible extra step and this we support.

Where medical treatment becomes disproportionate to any possible benefit, proper palliative care for a sick person must be maintained. Such care must include the provision of nutrition and hydration which is neither treatment nor medicine, unless this itself becomes overly burdensome. Sadly, prolonged terminal illness is part of the human condition. We should never act with the deliberate intention to end a human life, including the removal of nutrition and hydration so that death might be achieved. We do, sometimes, however, have to recognise the limitations of what can be done, while always acting humanely in the service of the sick person until the time of natural death occurs. Our heartfelt prayers and support are with baby Charlie and his parents and family, as well as with those caring for him.”

As the ERDs state, “The task of medicine is to care even when it cannot cure.”

Medicine cannot attempt to cure Charlie anymore, but I pray all involved in his care will do all they can to provide love, care, and support in his final hours.

Updates as of July 3rd, 2017:

Pope Francis issued a statement on July 2nd, 2017, in Italian that read:

“The Holy Father is following with affection and emotion the situation of Charlie Gard, and expresses his closeness to the parents. He prays for them, wishing that their desire to accompany and care for their own child to the end will be respected.”

It’s been falsely reported by news stations including the Washington Post that this is a “reversal” of the previous statements by Archbishop Peter Smith and a statement of the Pontifical Academy for Life. Even The Crux is misinterpreting the message.  It’s poor reporting and a manipulation of Pope Francis’s words. No one from the Vatican has disagreed with the futility argument. The issue here is that the family should be able to spend time with Charlie during his last moments, but they are able to bring him home to die there.

The statement from the the Pontifical Academy for Life:

The matter of the English baby Charlie Gard and his parents has meant both pain and hope for all of us.  We feel close to him, to his mother, his father, and all those who have cared for him and struggled together with him until now.  For them, and for those who are called to decide their future, we raise to the Lord of Life our prayers, knowing that “in the Lord our labor will not be in vain.” (1 Cor. 15:58)

The Catholic Bishops’ Conference of England and Wales issued a statement today that recognizes above all the complexity of the situation, the heartrending pain of the parents, and the efforts of so many to determine what is best for Charlie.  The Bishops’ statement also reaffirms that “we should never act with the deliberate intention to end a human life, including the removal of nutrition and hydration, so that death might be achieved” but that “we do, sometimes, however, have to recognize the limitations of what can be done, while always acting humanely in the service of the sick person until the time of natural death occurs.”

The proper question to be raised in this and in any other unfortunately similar case is this:  what are the best interests of the patient?  We must do what advances the health of the patient, but we must also accept the limits of medicine and, as stated in paragraph 65 of the Encyclical Evangelium Vitae, avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.  Likewise, the wishes of parents must heard and respected, but they too must be helped to understand the unique difficulty of their situation and not be left to face their painful decisions alone.  If the relationship between doctor and patient (or parents as in Charlie’s case) is interfered with, everything becomes more difficult and legal action becomes a last resort, with the accompanying risk of ideological or political manipulation, which is always to be avoided, or of media sensationalism, which can be sadly superficial.

Dear Charlie, dear parents Chris Gard and Connie Yates, we are praying for you and with you.

–  Vincenzo Paglia, President, Vatican City, June 28th 2017

July 17th, 2017 update:

According to various news sources, the Great Ormond Street Hospital has allowed American doctor Dr. Michio Hirano to examine Charlie. Hirano, a neurologist at Columbia University Medical Center in New York City, has offered Charlie an experimental treatment called nucleoside.The hospital has used nucleoside therapy in other patients with mitochondrial disease and is honoring the family’s request for an outside opinion. This comes after the hospital appealed for a new hearing on July 7th about Charlie.

Within the statement for the hearing, the hospital wrote, “Despite all the advances in medical science made by GOSH and the other hospitals around the world, there remain some conditions that we cannot cure and we cannot ameliorate.”  The hospital states it remains the unanimous opinion of Charlie’s providers to withdraw life-sustaining therapy, but I think they are attempting to close all venues of false hope for the family and strengthen their own resolve about this decision.

July 21st update:

The Gards are back in court, and new brain scans do not look promising. Hirano, who previously reportedly said that there was “11% to 56% chance of clinically meaningful improvement” in function has not commented officially on what he has learned yet. However, the Gards stormed out of court after calling the GOSH lawyer “evil,” and tensions remain high.

July 28th update:

The family announced that Charlie has passed away in hospice while at GOSH. The BBC appears to be reporting that on Monday, Dr. Hirano said the nucleoside treatment would be too late to work.  According to this summary called “the tragic case of Charlie Gard,” Dr. Hirano was invited to examine Charlie in January but did not do so until July and gave his support in favor of the nucleoside treatment without fully examining his medical record.

The Gard family asked to bring Charlie home to die, but their appeal was denied.  As Pope Francis said on July 2nd, 2017, “The Holy Father…prays for them, wishing that their desire to accompany and care for their own child to the end will be respected.” I sincerely wish that in this sad, sad circumstance, the family could have had the comfort of their son dying in their own home without strangers (and likely enemies from all the court battles) beside them but family and friends instead.

Many prayers for the Gard family and the soul of baby Charlie. May you receive in death the peace you did not receive on earth.

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