Alfie Evans and the Medical Ethics of Suffering

Alfie Evans and the Medical Ethics of Suffering

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Sadly, the case of Alfie Evans came to a close this week, as he passed away in his hospital room surrounded by his parents. The debate over the medical ethics involved goes on.

Ultimately, there are extensive moral, philosophical, and medical issues involved with the policies over these cases. They are complicated, messy, and often times heart wrenching. But let’s put some misconceptions aside to begin with, some propagated by the most extreme and emotional participants in this debate.

Those of us that took issue with the handling of this case for the most part do not believe the doctors involved were evil, murdering individuals. There was no malicious intent from the NHS or physicians involved. I am sure the physicians meant well, from their point of view.

A second point: this was not a case about preservation of resources for the greater good. In this case, the parents had found alternative sources to fund the care they wished for their son.  So those arguing that we need to make such decision to prioritize money for those that can be aided the most is largely off target, and not relevant to the case at hand. I also don’t believe that the single payer system of the NHS in England inherently caused their mistakes; I think any system that is blind to its own deficiencies could lead to such mistakes.

That said, what were the issues that were in dispute here?

First and foremost, what was the ultimate intent of the care providers in this specific case?  Both sides basically admitted, early on, that Alfie’s prognosis was dire.  The reality is this child was likely going to die, and even the experts preferred by the parents readily admitted this in court documents.

Why is this important? Some have raised other scenarios in which health care providers supersede the decision making of parents, for the welfare of the child. I personally have used the example of a bleeding child of a Jehovah’s witness, who was prevented from getting a blood transfusion. A similar example would be a child with a severe deadly infection, like meningitis, being prevented from receiving life saving antibiotics because of religious reasons.

However, that wasn’t the issue in this case. There was no path which provided a clear method to improve the child’s prognosis.  All the choices in front of the decision makers were about treating a child that had no long term prospects whatsoever. In the court proceedings, all sides agreed on the medical facts of the case, including the parents. So this was very different from the cases above, for that very reason.

So, what was the primary intent of Alfie’s doctors, if not to cure him, or prolong his life?

The primary intent stated over and over again in court documents was the focus on reducing Alfie’s suffering to the minimal amount possible.

The ethics of suffering is a deep and complex issue, in and of itself. A widespread view, especially in non-Western traditions, is that “happiness” consists of the absence of suffering. In Hindu and Buddhist belief, tranquility or contentment are amongst the most valued sentiments.

However, there is a distinction to be made between an obligation not to cause suffering and an obligation to prevent suffering. Suffering-focused ethics is a belief that places primary or particular importance on the prevention of suffering. Most views that fall into this category are pluralistic in that they hold that other things besides reducing suffering also matter morally.

The problem with suffering based ethics is, the absolutist view of such thinking takes you to strange, even dark, places. For example, some countries have begun to start programs that actively intend on…eradicating Down’s Syndrome. Down’s Syndrome  is a genetic defect cause by Trisomy 21, which causes mental defects and delayed intellectual maturity, among other issues. Some societies have deemed it ‘suffering’…for such people to exist.

For most people, this is an extremist view that seems unacceptable. Even in the UK, support for such a policy is a minority position. But again, if your primary goal is to reduce suffering, in any sense of the word…then there is a sort of dark logic to it.

Therefore, if you feel that such a policy is going too far…you are admitting that suffering cannot be used an absolute criteria for making end of life decision. You are basically stipulating there are other issues that also matter.

The UK court and the Royal College of Pediatricians itself reviewed the question of when it was appropriate to remove life sustaining medical assistance, and came up with three clear scenarios. The first is when death is immediate and/or imminent; that was not the case here, as Alfie survived for several days even without ventilator assistance. A second reason is informed consent for withdrawal of treatment; the parents actually opposed withdrawal of support.

Now here is the remarkable point: the third reason, the argument they finally made, and that the judge finally accepted in this case, states that even if absence of suffering or pain, if life is limited in quality, support can be removed; in short, the child would be better off dead than alive.

Now, this is problematic on several levels.

First…what is the scientific basis of quality of life? Is there some medical method to quantify how much ‘quality’ of life exists in a person, objectively?

Obviously, the answer is ‘No’. The physicians, and the judge in the case, are making a faith based decision.  They are basing this on their own moral, religious, and personal beliefs. There is no practical scientific method they are pursuing here.

If suffering is not critical to making this decision, what is?  Who exactly are we benefiting in such a case?  We are not benefiting the child.  The people benefiting are the doctors, the medical system, possibly the parents.  The judge is stipulating here that the child’s benefit is not necessarily critical in these cases. That is a shocking admission.

Frankly, I would have preferred a more logical and sensible medically based argument from the government and the court. The judge repeatedly made unscientific claims to defend his position. For example, at one point when the parents wanted to fly the child to Italy, the judge claimed that the flight may itself cause seizures. Notably, he never provided any evidence for this claim. It was a irrational statement, based on nothing, and because he was the judge…such irrational non-scientific claims were acceptable.

A second sound, logical, but harsher argument: that in a system such as the UK NHS, where there is limited funds to take care of everyone, the needs of the many outweigh the needs of the few, and therefore, rationing care makes sense. At least that would be a logical explanation of their decision. The decision, as it stands, lacked logical cohesiveness, and certainly has no objective science basis.

The second major philosophical issue in this case is the concept of parental rights, and how paternalism in medicine is a growing trend. This case illustrates the worst abuses of the archaic medical philosophy of paternalism.

Paternalism is the belief that physicians and medical professionals, being more educated and knowledgeable about health issues, should decide what is in the patient’s best interests, without regard to the patient’s own wishes.

Paternalism was a common practice among doctors before the middle part of the 20th century. But as individual freedoms grew in the Western world, patient autonomy (the belief that patients were intelligent and knowledgeable enough to make decisions for themselves) became predominant.

Paternalism becomes problematic as you further and further narrow the rights of parents to make medical decisions for their child. This process has a long history in the United Kingdom. In England, the Supreme Court has ruled that in any legal conflict about what is in a child’s best interest, the child must have an state appointed ‘voice’. This was an abuse of an original law that was passed to help care for children when two parents disagreed over the care of a child, especially in divorce proceedings. It has now grown to mean the government can interfere with decisions, even when both parents agree.

The specifics of the legalities aside, what becomes an issue for medical providers is, where do parental rights start, and where do they end?

Defenders of the NHS and physicians in this case continue to argue that to reduce Alfie’s suffering even one iota is moral. That in and of itself is not as white and black as it appears at first glance, as argued above. To compound this error, the judge specifically states suffering of the child is not necessary to remove life sustaining medical efforts.

If as the judge says suffering of the child is not necessary to remove parental rights, what exactly is the ‘red line’ he is willing to draw to protect parental rights? In short, he is admitting that there is no such line. The whims of the court and doctors, in his opinion, can always supersede any wishes of the parents, with logic, reason, or medical evidence notwithstanding.

Once there is no clearly definable limits to parental rights, what the UK is generally saying is that no true parental right exists. The simple fact is, they are reducing the concept of parent rights to a new definition: parental rights until such time the government decides it is inconvenient. That is no right at all.

For physicians, this is extremely problematic. Physicians rely on the decision making of families, because we have deemed them as the best arbiter of the feelings and intent of the patient. If that isn’t the case anymore…where does that leave us?

This leaves us with a gray area in which Alfie was likely to die, and likely to die very soon.  His suffering was not dramatically more or less with one course of action versus another, no matter how hard his physicians were trying to claim it as such.

So ultimately, when this is distilled down to the basics, the question largely resides on whether you believe parental rights are a true cornerstone of society…or those rights are simply a suggestion that can be ignored upon the whim of government officials and doctors, based on their own flexible moral code.

It would be another matter if there was clear evidence of harm with the parental choices.  If a parent is abusive, or illogical, then the state may have the right to intercede. But short of that evidence, where is the evidence that doctors somehow have a superior moral code to the parents? We have already shown that medical evidence was not the pre-eminent basis for making the final decision to pull all medical assistance to Alfie…and as such, all that is left is morals and faith.

Ultimately, physicians must realize that their knowledge, regardless of how extensive it is, is limited. Science can only go so far. And frankly, doctors must admit they are flawed. Some argued that the parents were so emotionally invested, they couldn’t possibly make a logical choice in this situation. But any physician that has treated a child knows, we are human and we are emotionally invested too.

In their piece on The Case For Suffering-Focused Ethics, Lukas Gloor and Adriano Mannino put it this way:

Given the difficulty of this task, it is important that we do not make it even more complicated by placing unreasonable formal demands on our values. Likewise, it is important that we do not hastily subscribe to some particular view without remaining open to reflection. Ultimately, choosing values comes down to finding the intuitions and guiding principles we care about the most – and if that includes a number of different intuitions, or even some form of extrapolation procedure to defer to better-informed future versions of ourselves – then the solution may not necessarily look simple. This is completely fine, and it allows those who agree with (some of) the intuitions behind suffering-focused ethics to care about other things in addition.

Nations must decide for themselves whether or not they think parents are the cornerstone of their society. The right of a parent to make decisions for their child is one of the most basic belief systems that is universal throughout the world.

Physicians are experts on medicine and science. What they are not experts on is values, religion, ethics and personal morality, and they shouldn’t pretend to be experts on such things. And in cases where the science leaves us questioning the truth of the situation, and we are left in a gray area of doubt and uncertainty, physicians would be well served to openly admit their limitations, and defer to the people most fit to make such determinations: a patient’s loved ones.

About the author:

Pradheep J. Shanker M.D., M.S. is a practicing Diagnostic Radiologist in Columbus, Ohio. In addition to medicine, he is an activist on health policy and educational reforms.

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28 Comments on "Alfie Evans and the Medical Ethics of Suffering"


Member
William Palmer MD
May 18, 2018

As Allan says, the issue here is more than suffering and the quality of life; it is essentially parental rights.

And, even larger than this, it is individual rights vs community rights, enlightenment values vs progressive values, communitarian vs individual rights, et al, all the way back to the ideas of John Locke and Hume and the other thinkers of the Enlightenment vs the communes of the middle ages. See Florence, Italy.

And, ever since someone put into the Hippocratic Oath the idea of “Justice” [ that we should be mindful of the needs of the community in our pursuit of health for our own patients], we have desperately needed a long and healthy discussion of these two avenues in attaining justice and welfare in our medical world.

The problem with community and communitarian rights is empirical and historical. Every time the world has tilted too far this way, tyranny and the numbers of murderous deaths have soared.

Every time we tilt toward individual rights, capitalism, productivity and wealth has soared (this is not to say there is perfection anywhere.)

But the theory of communitarian rights is still alive and well and everlastingly seductive. See it in Critical Theory and in Postmodernism.

Member
Peter
May 18, 2018

Does Alphie have any rights?

Member
Allan
May 18, 2018

That is what a guardian ad litem is for, but that never became a question.

Member
Peter
Today 7:20 am

The court acted as guardian.

“The primary intent stated over and over again in court documents was the focus on reducing Alfie’s suffering to the minimal amount possible.”

Member
William Palmer MD
May 14, 2018

As a thought experiment, look at what these two alternatives do to us, not the patient:

When we try to prolong life is it good for others to see? …does it make for a kinder citizenry? or the reverse? Does it teach great respect for, and awe of life? Or, is it showing a righteous cruelty in maintaining a tortuous existence?

If we routinely did the opposite–give up when illness becomes unequivocally terminal–would this be a bad lesson to instill in others? Would it teach that life prolonging is only a matter of weighing costs? Or maybe it would teach that we know all about suffering and that it is the epitome of bad experience …and we are trying to help everyone avoid this? Maybe this path shows more kindness?

How can we learn which of these is the most ethical course to take ?

Member
Allan
May 14, 2018

Bill, maybe a lot more of these ethical decisions should be left to the individual or the family. The state is only as ethical as its leaders and its leaders are tainted with self-interest.

Member
Allan
May 14, 2018

Excellent piece. The core point: “Once there is no clearly definable limits to parental rights, what the UK is generally saying is that no true parental right exists. The simple fact is, they are reducing the concept of parent rights to a new definition: parental rights until such time the government decides it is inconvenient. That is no right at all.”

Any payment argument is false because of the judges’ opinion and the money raised for the child’s care.

Member
Peter
May 16, 2018

Allan, what if the parents had no resources to extend Alfie’s life putting all the expense on the state or insurance – where would your suffering emotions and parental rights argument be then?

Member
Allan
May 17, 2018

Peter, while you are thinking in terms of emotions I am thinking in terms of individual rights. A person’s property exists for that person to legally use for his own benefit as long as he is not creating obligations for others. Do you deny that?

Member
Peter
May 17, 2018

Babies are not property.

But I greed with the decision to stop Alphie’s care. Parental rights are not limitless. But rights should not be determined by ability to pay. That’s not a right, but a privilege.

You are wrong when you say the parents found people to pay so that did not consume resources. The fact that Alphie needed a hospital bed and 24/7 medical care IS consuming resources that someone else could have access to.

The question was also what suffering was Alphie enduring. A far more valid argument.

Member
Allan
May 17, 2018

“Babies are not property”, nor do they belong to the state. Most believe the care of babies should be in the hands of their mothers and fathers.

“But rights should not be determined by ability to pay. ”

I don’t know what right you are talking about. There is such a thing as property rights. “Right to life, liberty and happiness” Jefferson’s happiness includes property which is also included in amendments 5 and 14.

” people to pay so that did not consume resources. The fact that Alphie needed a hospital bed and 24/7 medical care IS consuming resources”

That is what you wish to believe. No one would be kicked out of a bed because of Alphie. In fact he likely would have added private money that in part helps capitalize new beds or better treatment. He would have been placed in an empty bed that was losing money.

“The question was also what suffering was Alphie enduring. A far more valid argument.”

In other words you are agreeing that your initial argument was invalid and that property rights should not be taken away because of emotional situations.

This last question is the one that should be argued, however, do you think yourself a God that can make such decisions as life and death? Shouldn’t the burden of proof fall on your shoulders not the parents?

Member
Peter
May 17, 2018

“however, do you think yourself a God that can make such decisions as life and death?”

It appeared God made that decision by allowing Alphie to die when removed from life support.

Member
Allan
May 17, 2018

I guess you are suggesting that all people be removed from life support since God will make the decision.

I don’t think your suggestion will fly.

Member
Peter
May 17, 2018

You said people shouldn’t play God, then why doesn’t God play God?

Member
Allan
May 17, 2018

“…why doesn’t God play God?”

God does, but apparently not to your liking.

Member
Barry Carol
May 16, 2018

That’s a very important point, Peter. Suppose there were 100 or even 1,000 similar cases with all parents wanting the full court press and none of whom could contribute anything out-of-pocket toward the cost? What then? Moreover, suppose providing this care crowded out the ability to provide more useful care to other very sick patients? The inconvenient truth is that society can’t afford to give everything to everyone when it comes to healthcare even though cost was not the most critical issue in this particular case.

Member
Allan
May 18, 2018

“The inconvenient truth is that society can’t afford to give everything to everyone when it comes to healthcare ”

This is a rare case. Better to not cloud the waters as to where the rights of parents (individuals) conflict with the rights of everyone. I don’t see how he created obligations to others that weren’t voluntary in nature.

Member
Peter
Today 7:22 am

But you only believe that parents have absolute rights when they can afford to pay. They have no rights when society has to pay. So much for Alphie.

“The primary intent stated over and over again in court documents was the focus on reducing Alfie’s suffering to the minimal amount possible.”

Member
Peter
May 18, 2018

Barry, I agreed with the decision to remove life support. Yes, any society cannot afford to spend endless dollars on hopeless cases with emotional parents wanting limitless rights. But we don’t just pull the plug without some deep ethical and medical questions being answered.

A rational society can also be a compassionate one.

Member
Barry Carol
Today 1:11 pm

This is one of the reasons why hospitals have ethics committees, isn’t it? Even a compassionate society needs to set limits but it needs to set them in a moral, ethical and rational way. .

Member
Allan
Today 2:29 pm

“This is one of the reasons why hospitals have ethics committees”

Barry, ethics committees do not necessarily have all the answers nor would one committee at one hospital necessarily agree with another committee at another hospital. In any event ethics committees do not exist to usurp parental rights.

Member
Peter
May 17, 2018

So in your world parental rights (parental rights until such time the government decides it is inconvenient. That is no right at all.) and extending care to hopeless babies would only be for those with the ability to pay the full cost out-of-pocket?

Member
Allan
May 17, 2018

Peter if the care is hopeless then the family is wasting their money since no one is harmed or benefitted. Do you wish to legislate that people cannot waste money? Can you define “waste of money” for all people and all situations?

Member
Peter
May 17, 2018

The discussion was about unnecessary suffering. We can legislate when anyone, rich or poor, is causing suffering so that an end is better for the patient. For gown ups a living will communicates their level of acceptable suffering. For Alphie, the courts had to intervene. Just because people have money to waste it does not give them rights over those with no voice.

Member
Allan
May 17, 2018

“The discussion was about unnecessary suffering.”

No. The discussion is about parental rights. You were willing to let the poor baby “suffer” if the state were willing to pay and only felt the situation unfair because these parents were paying and other families couldn’t pay

The issue not under discussion is “suffering”. The judges didn’t rule based on that account..

Member
pjnelson
May 14, 2018

What was the basis before the Court to establish Alfie’s suffering or distress? Was it solely on the basis of his worsening cardio-respiratory homeostasis? Was it solely on the basis of his already notable deficits in his reflective-Cognition CLUSTER of human capabilities? Or, was it solely on the basis of his profound deficits to his combined CLUSTERS of human capabilities, Innate temperament, and Baseline homeostasis that could not support survival as a dependent person for becoming an independent person? Let us not forget that 200 hundred years ago, altered only by intervening technology and ecologic evolution, a person’s HEALTH began in one’s immediate Family by its Caring Relationships, matured by the Family Traditions through the person’s Extended Family, and sustained by the Common Good of the person’s Community. Remarkably Alfie went home and lived longer than anyone expected. Clearly, he went home to the most powerful therapy for everyone’s survival, the Caring Relationships of his family.

Here is one view of a Caring Relationship:

A variously asymmetric and usually repetitive interaction, occurring between two persons with a mutually understood purpose, that each person perceives as representing a beneficent intent to enhance the other person’s autonomy by communicating with Warmth, Non-critical acceptance, Honesty and Empathy.

Do the courts in Great Britain ever appoint a “Guardian Ad Litem?” If so, why not for Alfie?

Member
Peter
May 14, 2018

“Those of us that took issue with the handling of this case……”

Please state then what your “solution” to this case would have been?

“this was not a case about preservation of resources for the greater good. In this case, the parents had found alternative sources to fund the care they wished for their son.”

Not completely true. The maintaining of Alfie’s life consumed a bed, hospital room and medical staff, time better spent on patients who actually had a chance of recovery.

“The first is when death is immediate and/or imminent; that was not the case here, as Alfie survived for several days even without ventilator assistance.”

How fast should death occur to be viewed as “imminent”? One minute, one day, two days? What constitutes “several” days? After two days should artificial care have been restored?

“Both sides basically admitted, early on, that Alfie’s prognosis was dire. The reality is this child was likely going to die, and even the experts preferred by the parents readily admitted this in court documents.”

Then what was their point of prolonging Alfie’s life with artificial intervention? If this were their pet dog what decision would they make and why? Would they deem the animal needed to be euthanized to reduce it’s suffering?

It’s impossible to jump inside Alfie’s brain to experience his suffering, but one clear point is, death alleviates any suffering. I just cannot fathom what the parents were trying to accomplish?

My wife was a neonatal nurse and saw her share of parents exercising their “parental rights” by artificially keeping hopeless babies alive while they waited for God to cure their child. That is not a valid parental right, and it does not give them more insight into suffering.

Member
William Palmer MD
May 13, 2018

Some other angles:

How much do we owe future people?…those folks who have not been born?

How much do we owe science?…so that we find the scientific basis of helping future people? Maybe the control arm in a few of our trials should have a little suffering in them? We can’t drug everyone’s D-3 receptors on both trial and control arms on every experiment, can we? [D-3 receptors are what opioids latch on to.]

People could have a “hive” brain…it is possible…a behavior like ants that suggests that we are acting upon the direction of a larger brain than we each have. A Societal Brain. How much do we owe this entity–if it exists?

How much do we owe the species, H. sapiens? Is it right to kill or harm other species to further our own? Do we have some kind of special purpose in advancing H. sapiens?

Also, if we deny suffering, are we preventing some kind of natural salvation of a person? Could there be some value or spiritual good that the patients gets from a little suffering? Who are we do judge this? Maybe it helps a person in some way?

Fascinating topic, but, alas, good answers are really difficult to achieve. And, do we know when answers are staring at us?