[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: "...
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: "...
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.
http://thehealthcareblog.com/blog/2018/05/21/the-ethics-of-keeping-alfie-alive/
_____________________________________________________________________
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.
http://thehealthcareblog.com/blog/2018/05/13/alfie-evans-and-the-medical-ethics-of-suffering/
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