Charlie Gard, the 11-month-old English boy with fatal mitochondrial DNA depletion syndrome, is at the center of an international debate about who has the right to turn off a patient’s life support system. Charlie’s care team at Great Ormond Street Hospital in London applied for permission to remove him from life support, arguing that he should not be forced to suffer any further since he is sure to die from the disease. Both the British High Court and the European Court of Human Rights supported the request, arguing it would be cruel and inhumane to force Charlie to suffer through further treatments that will not help him. Charlie’s parents want him to stay on life support so they can try an experimental treatment.
What may be disturbing to Americans is the idea that a legal body can decide to withdraw life-sustaining treatment from a patient.
At its heart, this is a classic ethical issue. As someone who has served as a clinical ethicist, I can tell you that such cases occur often in hospitals across America. I have often encountered families who wished to keep a loved one on life support indefinitely even as doctors explained there was nothing more that could be done for the patient. I have even encountered cases involving newborns, some younger than Charlie.
Modern ethicists have debated how to handle such issues for decades. Controversial thinkers like James Rachels and Peter Singer have extensively discussed the distinction between killing a patient and letting him or her die. They have argued that, all other things being equal, patients should not be forced to suffer any longer than they have to if there are no further treatments available. Within frameworks of medical ethics, it is commonly held that physicians should not offer therapies that are unlikely to benefit patients and that are likely to cause significant harm. As far as medical ethics theory goes, the justifications of the High Court and the European Court of Human Rights are comparatively uncontroversial.
In America, however, numerous state laws explicitly state that quality-of-life determinations and decisions about withdrawing life-sustaining care must come from the patient, his or her family, or another available surrogate, as in New York’s Family Health Care Decisions Act. In clinical practice in the U.S., ethicists often encounter cases in which the care team thinks that life support should be turned off for the same reasons cited by the British and European courts in Charlie’s case. But as long as there is an available surrogate decision maker, no one other than that individual can decide to withdraw life support.
In the American system, clinicians can decline to offer a treatment. They can decide, for example, not to resuscitate a patient or not to offer dialysis if they believe it will cause more harm than good. Clinicians cannot, however, withdraw life support without the consent of a decision-maker. In contrast, such decisions in England have largely been left to courts to decide.
Charlie’s case is somewhat complicated by an extra safeguard in British law. Under the Children Act of 1989, patients in Charlie’s situation can be assigned their own independent legal representative to ensure that their interests are met, rather than the interests of their families. Charlie’s guardian agreed that life support should be withdrawn, generating a complex legal case involving the hospital, Charlie’s appointed legal guardian, and his parents.
The case may trouble many Americans because our system essentially holds that only the patient or a surrogate that he or she has chosen has the final say in such decisions. Institutions might sue for guardianship, say to ease discharge planning or to get access to further treatment, but never to withdraw life support if a surrogate is available to make that decision.
Charlie Gard’s case raises significant ethical questions about health care, experimental treatment, quality of life, and end-of-life decision-making. It is a sad reality that families all around the globe must confront such terrible situations every day.
The case is also far from over: The hospital has asked the High Court to reconsider Charlie’s situation as more evidence for experimental treatments has been made available. As we watch it continue to unfold, it is crucial to consider the ethical frameworks involved and to remember the sharp legal distinctions between the American and British systems.
Charlie’s case also raises serious questions about the authority of states to enforce ethical standards based largely on medical speculation. We can never be completely certain of clinical outcomes, so can a state be justified in determining when a life will end? While we might be suspicious of any legal body determining the manner of someone’s death, it’s important to keep in mind that such decisions are based on perhaps the most essential and cherished element of ethical care and human concern: the alleviation and minimization of suffering. We can only hope that Charlie, his family, and everyone in similar positions receive help with that burden.
Michael S. Dauber is a bioethicist who has served as a clinical ethicist and a member of an institutional review board.
GRAVY TRAIN
This is such a complicated subject and for all the points someone could make there will be a sensibility offended. Life is a continuum which includes death. Some fear the slippery slope of placing value or ability to pay or others objecting to tax dollars going toward someones choices. Just because we can keep you alive will not mean it is a good idea in every situation. What about the person that has to do the care? Inflict pain as ordered while artificial means that may keep blood pumping and 02 perfusing and pain still felt. What if suddenly, we were transported back in time a century or two, the problem would be moot.
A real conversation and better education about health and lifestyle choices, possible outcomes, preventions and eventualities is sorely lacking and oh so needed. Every person from an early age must understand and should wittiness stages of life, results of choices so the foundation is better laid so a reasonable ‘when to say when’ is understood from an early age. Lets ensure one does the care for those unable or without the help, sees or rather smells the facility’s they end up in. Just a few years, like with Israel and how every one must serve in the army.
Women cant get certain health treatments, services or medications because some have beliefs that pregnancy ending or preventing is wrong. How is keeping grandma and grandpa alive who repeatedly get infections leading to sepsis which are resulting from the body trying to die. The body is no longer managing or effectively functioning in the way designed. Often treatment is a fan trying to put out a house fire. Mostly you have spread embers that only increase the size of the fire and the path of damage left behind. The cause of infection becoming more resistant to treatment. The rapid reproduction of these bacteria enables rapid mutation to resist treatment, longer or more opportunities to spread to others, Often, that person like the house, is never the same, mental deficits compound, falls and other complications or reactions to treatment happen. There is a wicked little saying in healthcare that we do treatment to cause complications so we can make money.
Women die everyday from complications of pregnancy and birth, it has a higher risk than many medical treatments. The answer is not in my reflections but the decision is too often made by people that dont really have a good picture of all the repercussions. Ensuring respectful awareness of all the details and possible outcomes would go a long way in helping people accept or choose the lengths in which the manner in which the inevitable occurs for them, that does the least harm for all involved.
The treatment is an oral medication. How is it “likely to cause significant harm”?
You make it sound as though the parents are the only ones who believe in this treatment. This is false. Michio Hirano has credentials from well respected schools, this treatment has had clinical success in the past. It’s a ridiculous illusion to pretend that medical professionals don’t frequently make mistakes or disagree with one another on courses of treatment, especially with such uncharted territory.
The real issue is that the state is asserting ownership over Charlie’s body under the guise of protecting his interests. Hirano and the parents aren’t suggesting anything harmful.Ultimately, this comes from a hatred and fear of disability and disabled people. Yes, if the treatment were successful Charlie would live with a disability. So does a huge portion of humanity.
Treating illness isn’t cruel. Allowing ill people to die isn’t mercy. Living with a disability isn’t a horrible, worthless life. Quality of life should be something that healthcare professionals seek to improve (pain control, mobility aids, therapy, etc.). Healthcare professionals shouldn’t decide patients ought to die because patients don’t have enough quality of life.
When an oral medication is available that might treat a patient and the government will not allow the patient to have the treatment because he might suffer– that is nonvoluntary euthanasia. The fact that it’s passive nonvoluntary euthanasia doesn’t make this case better. The patient is a baby, utterly dependent regardless of his health. You might just as easily say you’re not killing him if you deny him food (and by the way, if the ventilator is taken off won’t he asphyxiate? Is that a dignified death with no suffering in it?).
Only 5-6 States have Death with Dignity laws.
As mentioned in your article as well, The decision is left generally up to the patient and their surrogates, however what you have left out is that it is hilariously easy for family, spouses or other representative individuals to claim that the patient is incapable of making a rational and thus legally binding decision, taking that decision away from them.
So in a way, it does end up going to the courts in the end. We just like to close our eyes to it.
“But as long as there is an available surrogate decision maker, no one other than that individual can decide to withdraw life support.” – This didn’t apply to the now infamous Terry Schiavo situation.
“In the American system, clinicians can decline to offer a treatment.” Whilst the American system does not allow for refusal, it can be said that in a free market healthcare framework – there are many routes to refusal.
I believe in that case there were two legal surrogates: Terry’s husband and her parents. The majority of their case, aside from George W. Bush’s antics, was the fight over who would be recognized as the official surrogate in the matter.
I would have to read up to make sure I have that detail correct however, but I do recall the parents essentially creating false evidence of Terry “reacting” to stimuli. by cutting videos together.
And yes, ironically while it is not allowed for refusal, they can however simply…not mention all options available in the first place.
This has become a political game for trump. Unless there is a reasonably good chance of recovery, extension of life, AND quality of life, the British court was correct. Otherwise it would only prolong the suffering of this unfortunate child who cannot physically or legally speak for himself. Furthermore, if there was a reasonable chance, why can’t the NY doctors either go to the U.K. to do the treatments or direct a U.K. doctor to do it. First, if it works, that will bolster the researchers’ findings and notoriety that this was done in a multi-center, international application. Second, if the U.K. says no on safety/efficacy concerns, what does that say about the US standards? Both our countries derive their human research/experimental treatment directives from the international Declaration of Geneva with additional nation-specific regulations. Futile care should not be given because it prolongs the inevitable with intervening suffering for the patient and because it wastes finite resources. Again, this is based on politics and not science or bioethics. As for the different systems, in the US a court can intervene in the healthcare decisions if a patient is incapacitated like Charlie, the legal representatives are not acting in the patient’s best interest like the parents, or there is conflict in the law like with the disagreement between the guardian and parents. Parents rarely do things that later are seen as wrong out of love and their own fears but that is why an independent party assigned by the judiciary is necessary. I think this should be left to the clinicians, scientists, and lawyers not politicians or the general public.
The doctors in England are perfectly capable of doing this treatment on their own. Were planning on starting it back in January, were simply waiting for regulatory approval, when Charlie had a series of setbacks that they believe resulted in severe brain damage. They now refuse to do the treatment believing it will only prolong the babies suffering. Note the American’s doctors offer of treatment was also conditional on getting the same regulatory approval the English doctors were waiting for.
There is a doctor (Michio Hirano) willing to do treatment. The family has money to pay for the treatment. The treatment already exists. It’s an oral medication, not anything invasive. It’s had some clinical success.
It’s not just the doctors vs the parents. Just because it’s experimental doesn’t mean it’s unscientific.
Although it may seem strange and cruel to Americans, the law in the United Kingdom is very clear; the rights of the child always take priority over the rights of parents. Charlie is his own person, and the doctors and courts must balance what is right for him vs. what his parents think is right for him. The expert doctors believe that getting this treatment would simply prolong his suffering and prevent a dignified and peaceful death, his parents disagree. In this instance I think the parents’ judgement is clouded by their love for him and clinging to any hope, no matter how desperate.
It’s Charlie’s rights that are the problem here, actually. Charlie has ownership over his own body. But since he can’t speak for himself, the government doesn’t automatically own him, the parents are his advocates. In cases where the parents are abusive, the government should intervene. But the parents aren’t doing anything unreasonable here.
It’s not the doctors vs. the parents. Treatment exists in America. It’s an oral medication. Doesn’t Charlie have a right to a chance at life? How is that going make him suffer?
Also, prolong his suffering and “dignified and peaceful death”– He’s an infant. What part of his life is especially undignified?
He might be in pain, but pain can be controlled, at least to a degree, with medication. Other than that, what does a “dignified and peaceful death” with no suffering look like, for a baby? If the trend of the past few days continues, the staff of the hospice center will unhook Charlie’s ventilator and he’ll asphyxiate.
No such problems in the US. Even more so, when the new healthcare law will be enforced. When the insurance will not cover the life support any longer, the plug will be unplugged.
Sorry, US hospitals are not allowed to pull the plug simply because a patient can’t pay. They have to swallow those costs. They can refuse to start new treatments, ‘accidentally’ give the patient too much pain medicine, or not enough pain medicine, ignore bed sores for limited periods, and try to talk a guardian into pulling the plug