Alfie Evans and the Medical Ethics of Suffering

By PRADHEEP J. SHANKER, MD

 

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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