[My comments in brackets. Bolding done by me.]
A British doctor once earnestly asked whether American physicians carry credit card-reading machines inside their white coats. Myths about the National Health Service (NHS) can be equally comical. British doctors don't prostrate every morning in deference to the NHS, like the citizens of Oceania sang to Big Brother in Orwell's dystopia. Nor, in their daily rounds, do they calculate opportunity costs for keeping patients alive on ventilators.
For the most part, doctors in both systems do their best for their patients—the constraints of biology play a greater role in influencing physician decisions than the economics of fee for service or capitation. This doesn't mean that the system is unimportant. The system sets the stage that shapes decisions systematically—and differences between systems are most evident in gray zones. For instance, British doctors don't relish missing ST-segment elevation myocardial infarction (STEMI) any more than American physicians, but their propensity to get a triple-rule-out study for vague chest pain may be lower.
To wit, if American doctors do more and British doctors do less, it's because they believe, respectively, that more and less are in their patient's best interests. Part of the challenge of analyzing physicians, ever since the Dartmouth studies on variation in physician practice, is reconciling in opposite medical decisions similar intentions…
The crux of the dispute is who has the last say in a child's treatment decisions—parents or physicians. Many believe that in EOL, the right exclusively belongs to parents, which Alder Hey violated by stopping Alfie's transfer to Italy. However, the matter is not as ethically clear cut as it first appears.
Doctors versus Parents
Parent’s right to ignore physician’s management of their child is not absolute. For example, parents can’t stop antibiotics for acute bacterial meningitis just because they have an objection to antibiotics. But they can object to their child being immunized – even though immunization benefits their child. Medical paternalism isn’t absolute but there are zones in which it becomes absolute and zones in which it is ineffective.
Why can doctors treat a child against parent’s wishes for meningitis but not vaccinate a child against parent’s wishes? Intuitively we see the difference – meningitis has a high mortality untreated. Though, with labored reasoning, we can also create an indistinction. An unvaccinated child is also at risk of death from the infection the vaccine seeks to prevent – though the mortality risk is nowhere near that from untreated meningitis, it is not zero.
Thus risk, in and of itself, cannot be what permits medical paternalism in one but not the other. One may reason that it’s not risk per se but the degree of risk which distinguishes the two. This is an argument of degree. The trouble with arguments of degree, as scientific and logical as they sound, is that they inevitably lead to the question: where do we draw the line? By line I mean a threshold of risk – a numerical or even a descriptive threshold of mortality above which medical paternalism is permitted and below which it is not.
No such line in the sand exists though it need not exist for us to see that the risk of imminent death from meningitis vastly exceeds risk of death from an infection one doesn’t have but might have. And here is the important point: one need not have defined a precise threshold of risk over which doctors prevail over parents should a conflict arise, in order that medical paternalism prevails in the treatment of bacterial meningitis. The child is in danger – arguing where imaginary lines are drawn would be silly. Nor do we need to define “danger.” Some things are self-evident – obvious without explicit definitions.
There are situations where the diagnosis is less clear cut than acute bacterial meningitis, where doctors still prevail over parents when it comes to a child’s well-being. Take a child with fever, rigors, cough and weight loss with nodules on the chest radiograph, and the doctors make a presumptive diagnosis of military tuberculosis and ask that the child be admitted in hospital for treatment. The parents cannot transfer the child to Spain for a second opinion if that transfer interferes with the treatment and may harm the child. However, if a child has headaches and the physician decides against an MRI, believing that the headaches are tension headaches, the parents have every right to get the child checked by any physician anywhere in the world.
Let’s return to the case of parents objecting to their child being vaccinated. An unvaccinated child places other children at risk by potentially disrupting herd immunity. Vaccination is for both individual and greater good. Yet NHS doctors, doctors in socialized medicine, a system – let us remind ourselves – in which society pays for the individual, can’t vaccinate children against parent’s wishes even though vaccination increases net societal welfare by building herd immunity. Put it this way – medical paternalism can’t prevail over parents’ wishes to help other children. Doctors only prevail if a particular child’s welfare is in jeopardy. Far from being in service of utilitarianism, of greatest good for the greatest number, doctors in the NHS triumph over parents only when a specific child is in danger.
Medical Paternalism in End-of-Life
To recap, there are three points. First, neither parental wishes nor medical paternalism is absolute. Second, when doctors and parents have opposing views on medical management of a minor there is no explicit line in the sand which separates situations where doctors prevail from situations where parents prevail. Third, increasing net social welfare is not a reason for doctors to prevail over parents.
The question is should parents have the last say in end-of-life decisions about their child. Specifically, when parents wish to prolong the life of a terminally ill child with profound neurological compromise at all costs – by costs I don’t mean financial costs but medical intervention – but doctors believe palliation, not prolongation of life, is in the best interests of the child, who should prevail?
Palliative care is clearly different from the antibiotics-meningitis example in which the doctors prevail because antibiotics save the child’s life. At first it may seem odd, not just to a restless logician, that medical paternalism prevails over parental wishes both to extend a child’s longevity and not to try to extend it. Surely, there’s a distinction between starting treatment and stopping treatment.
The distinction between palliative care and antibiotics for meningitis is not a distinction of degree but a categorical distinction. Palliation seeks not so much to curtail life but to relieve it from suffering. If the appropriateness, or lack thereof, of medical paternalism in EOL decisions is to be explored, we must explore the role of doctors in palliative care.
The goal of medical care isn’t always to prolong life by any means necessary. It is often just symptom relief, and sometimes to keep the terminally ill comfortable, to ensure that they’re treated with dignity. These goals aren’t always congruent, and sometimes oppositional.
There are fates worse than death. Keeping the cardiorespiratory system intact by aggressive modern medical techniques in persistent vegetative state may seem humane to some but does seem inhumane to many. End-of-life is at best an ethical gray zone – by that I mean you can understand both the stance of the family and the point of view of the doctors. As the patient, the rightful decision maker, by the very nature of their terminal and profound neurological compromise is unable to articulate their preferences, someone must make a decision.
The role of medicine in palliative care is not absolute – there is much to palliation which is metaphysical. But doctors do have an important role in determining prognosis, in ascertaining that prognosis is indeed hopeless, and establishing that palliation, whatever may comprise it, is appropriate.
The conclusion that Alfie's neurologic deficit was substantial, progressive, and incurable was fundamentally a medical analysis that Alfie's physicians, world experts in pediatric neurology, made by their in-depth understanding of biology and careful assessment of Alfie. It would be humane to include Alfie's parents in the decision-making, encouraging and indulging all the questions they have. It would be naive to conclude that they knew more about Alfie's prognosis than his physicians…
I am very dubious of the argument about Alfie’s suffering. How did his suffering manifest itself? He wasn’t writhing or grimacing with parents oblivious to the same. Was he tachycardic or hypertensive? In his minimally conscious or unconscious state how much suffering did his seizures cause? Was he in an existential distress because of his profound disability? I am suspicious that any claim of suffering is largely a projection that has nothing to do with Alfie.
Let's reframe the first question. In a person in a vegetative state, is there something inherently inhumane about constantly changing artificial feeding and respiratory access, manipulating support lines, fighting infection, getting numerous x-rays and CT scans, and breaking ribs in attempts at cardiopulmonary resuscitation? The question isn't whose call it is to switch the ventilator off—though that's an important question, too—the question is whether there is indignity in prolonging the life of someone in a vegetative state. Science can't help you here; it's your moral intuitions you have to call upon.
It is the patient, not the doctor, who determines their quality of life. However, if the patient can neither feel (ie, they lack consciousness) nor articulate that they can feel or not, we do not know whether they prefer palliation over prolongation of life. The second question is a paradox. However, when we do not know, we must assume—there is no getting away from assuming—but no normative ethics say that we must assume that a patient in a vegetative state would wish for life to be prolonged rather than assume that they desire palliation instead.[James Comey: "...our judgment is that no reasonable prosecutor would bring such a case."]
Even thoughtful observers can't understand why Alfie's transfer to Italy was stopped. The dispute isn't that Alder Hey violated the parent's right to a second opinion. BGH was not offering a second opinion—and I'm assuming that the Pope wasn't going to reattempt the Raising of Lazarus miracle on Alfie. BGH was offering long-term ventilation and feeding by means of a tracheostomy and gastrostomy, respectively.
The dispute is this. When the Alder Hey physicians knew that Alfie's condition was hopeless, what was the harm in allowing Alfie to be airlifted to Italy? They were not using the public purse; the transfer and care were to be funded by private money. There seems at once little moral, ethical, medical, or financial reason to stop the transfer. Was this an ego battle between Alder Hey Hospital and pro-lifers?...
Were I Alfie's neurologist, I'd have allowed the transfer. I might have written a book, Alfie and Me, taken a selfie with Alfie and the helicopter, and posted it on Twitter. I'd have invited the Pope to bless Alder Hey Hospital—and seen what would happen to the all-cause mortality. If a poor infant's predicament was going to be made into an international circus show, I'd have milked it…
Though Alfie had too little thalamus to feel pain, they could not rule out that he was feeling pain—there's a raging debate, not just of the philosophical nature, whether the brain is even necessary for consciousness.
They speculated, based on their strong clinical judgment, that there was a risk that the helicopter ride would have increased the frequency of Alfie's intractable seizures. Indeed, the physicians in Italy made this assessment, too. [This as an argument against transfer is very specious.]
Though it is hard seeing how Alfie’s physicians were wrong in believing that palliation, not prolongation of life, was in his best interest, the question remains: when family disagrees with doctors in EOL who should prevail? In the US, the family seems to prevail. I need not labor about the brutality of EOL in the US – and American physicians have spoken more lyrically on this topic than I ever could. Suffice to say that no normative ethics supports that the parents have the veto when the ventilator should be switched off in cases such as Alfie’s [James Comey: "...our judgment is that no reasonable prosecutor would bring such a case."]…
Through meticulous reasoning Hayden concluded that stopping ventilation was in Alfie’s best interest because his neurological impairment was advanced, progressive, incurable and, and this is the important addition, that there remained a possibility that Alfie was suffering…
[I am very dubious of the argument about Alfie’s suffering. How did his suffering manifest itself? He wasn’t writhing or grimacing with parents oblivious to the same. Was he tachycardic or hypertensive? In his minimally conscious or unconscious state how much suffering did his seizures or other aspects of his predicament cause? Was he in an existential distress because of his profound disability? I am suspicious that any claim of suffering is largely a projection that has nothing to do with Alfie.]
So long as life is prolonged by modern medical techniques, doctors will be involved in EOL decisions. EOL is an emotive area, and clashes between family and physicians happen frequently. Spare a thought, though, for Alfie's physicians who remain anonymous, who faced a mob outside the hospital, faced death threats, faced accusations of murder, faced vituperative attacks on social media. They are humans, too. Caught between doing the best for Alfie and relinquishing to populism, they chose the former. You may disagree with their choice. But there's little doubt that they were courageous physicians who stuck to their convictions. I, for one, give them a standing ovation.
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...
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…
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…
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.