Baby Joseph and the Canadian Death Panels

(I can’t believe I’m going to start this post on such a serious and somber topic with a wildly inappropriate joke, but here goes):

No, despite the fact that “Baby Joseph and the Canadian Death Panels” would be an epic band name, this is not, in fact, one of my infrequent posts on music. Instead, it’s about how we in this country – and specifically, our country’s media – deal with aspects of our health care system. Baby Joseph’s full name is Joseph Maraachli. He is fourteen months old. Baby Joseph’s family lives in Ontario, Canada. Baby Joseph has developed a rare medical condition called Leigh’s disease (or Leigh’s syndrome). It is an invariably fatal condition which strikes almost exclusively young children (between several months and two years old). Some infants who develop Leigh’s disease can live as long as early teenage years, but most die within a few years, some even more quickly. This is not a disease that can be “beat,” though, in the way that breast cancer can be. A diagnosis of Leigh’s disease is a death sentence.

The reason that baby Joseph is currently in the world’s (and especially America’s) news outlets has to do with the fact that his doctors in the Canadian health care system concluded, based upon their observation of baby Joseph’s condition, that he was in a persistent vegetative state, near the end of his life, and they presented his parents with consent forms to remove baby Joseph’s breathing tube. The Maraachlis refused to sign the consent forms, and rejected a later court order that the breathing tube be removed.

In the end, several US-based groups, including Priests for Life (which has branches in both Canada and the United States) organized and agreed to pay for a transfer of baby Joseph to a medical center in St. Louis where he could have a tracheotomy performed. This is the procedure that the Maraachlis had been seeking in Canada, without success. Long story short: baby Joseph received the transfer and the tracheotomy, and has been returned to Canada into the arms and home of his family. His breathing is apparently much easier, and he is even breathing on his own now without the aid of a ventilator.

A happy ending, right? I confess, I’m not qualified to judge — and I suspect opinions will vary widely. What I can determine, though, is that this is another instance not too unlike the Terri Schiavo case, in which popular sentiment is mustered against unspecified dastardly forces who, it is suggested, place no (or not enough) value upon human life, and it is only due to the tireless diligence of a small but committed band of life-loving advocates that the patient is saved at the last moment.

Unfortunately, that’s not the way things actually went in the Schiavo case, and it’s not what happened to baby Joseph, either. What did happen here, though, is that various groups here in the states saw an opportunity to dramatize a case they think ought to highlight the cold, callous nature of Canada’s single-payer health care system. Let me explain.

When the Republican-controlled congress brought federal business to a standstill in order to intervene specifically in the Schiavo case, the “pro-life” forces thought they had a winning issue on their hands. Unfortunately for them, when all efforts including a last-ditch appeal to the Supreme Court failed and Terri Schiavo ultimately died on March 31, 2005, an autopsy revealed that despite the repeated insistence of the “pro-life” supporters of keeping Terri Schiavo alive through extraordinary measures in the belief and hope that she could “recover,” portions of Schiavo’s brain were in fact liquefied, as had been suggested as early as 2002 via CT scan. Indeed, Terri’s autopsy revealed…

(t)he brain itself weighed only 615 g, only half the weight expected for a female of her age, height, and weight, an effect caused by the loss of a massive amount of neurons. Microscopic examination revealed extensive damage to nearly all brain regions, including the cerebral cortex, the thalami, the basal ganglia, the hippocampus, the cerebellum, and the midbrain. The neuropathologic changes in her brain were precisely of the type seen in patients who enter a PVS following cardiac arrest. Throughout the cerebral cortex, the large pyramidal neurons that comprise some 70% of cortical cells – critical to the functioning of the cortex – were completely lost. The pattern of damage to the cortex, with injury tending to worsen from the front of the cortex to the back, is also typical. There was marked damage to important relay circuits deep in the brain (the thalami) – another common pathologic finding in cases of PVS. The damage was, in the words of Thogmartin, “irreversible, and no amount of therapy or treatment would have regenerated the massive loss of neurons.”

In other words, there was absolutely no chance, as examining physicians had said all along, that Schiavo would “recover” if the feeding tube were left in long enough or the right combination of treatment(s) were applied.

A similarly grim prognosis appears to be the universal consensus of baby Joseph’s Canadian (and even American) doctors. No one is arguing that baby Joseph will “get better.” In fact, no one is even arguing that with the tracheotomy he received in St. Louis, he will manage to simply not die, even if he remains in a persistent vegetative state. His parents simply wished to pursue the treatment because an earlier child (eight years older than baby Joseph), who also died of Leigh’s disease, was given a tracheotomy, and it eased his breathing.

But no two cases are identical, and the conclusion of both the primary doctors and the medical review board to whom the Maraachlis’ appeal was sent concluded the same thing: that a tracheotomy was not indicated because it would not improve baby Joseph’s condition. It’s true that “improving the patient’s condition” is not the only reason care is provided to desperately ill people. Palliative care is also provided for the terminally ill, to ease suffering in the final stages of life. And indeed, palliative care was being provided to baby Joseph in Canada. It’s just that his parents wished to pursue the tracheotomy and his doctors did not. So the rest of the world is now presented with the specter (again) of a big, bad government bureaucracy denying care to a desperately ill child, against the wishes of his own parents.

How could they, those heartless bureaucrats!!??

This is a very, very easy argument to make. It’s also one which helps advance the right-wing narrative that government-administered health care is bad for people, filled with arbitrary and capricious rationing (even the dreaded, Palin-inspired “death panels”), and does not respect patients own wishes or those of their designated representatives. In fact, in their coverage of the events surrounding baby Joseph’s circumstances, FOX News did exactly that: sensationalize the situation to elicit sympathy for a grievously ill child while simultaneously bashing “socialized medicine,” as they like to refer to it:

The baby who was hours from being pulled off life support at his Canadian hospital has been rescued by the national director of Priests for Life and taken to the U.S. for treatment….

Doctors in Canada said the illness is irreversible and wanted to remove the breathing tube. His parents appealed to Canadian courts, but the hospital’s decision was upheld. (emphasis mine)

Note how the diagnosis that the illness is irreversible is attributed to “Canadian doctors,” as if every reputable medical authority in existence including our own NIH which I linked to above didn’t also concur that Leigh’s disease is, in fact, irreversible. Reporting of this nature serves to make those who are unfamiliar with the disease (which I would guess are most of us; I know I wasn’t familiar with it until now) and who trust that they are being given a “fair and balanced,” unvarnished bit of news on this story, think that it is only those evil Canadian purveyors of socialized medicine who’ve “written off” baby Joseph, instead of it being the confirmed conclusion of medical authorities everywhere.

FOX even gave free publicity to Priests for Life’s advocacy for the Maraachlis by quoting PFL’s web site on the subject:

“The medical board overseeing his case is apparently convinced that giving proper care to ‘Baby Joseph’ is futile,” the website reads. “They don’t mean that the medical care won’t help him. They mean his life in its current condition isn’t worth the trouble.”

Sure, this is a quote, and not FOX’s own newswriters putting this into the article…but there are no counterbalancing quotes from baby Joseph’s Canadian doctors or in fact anyone who isn’t sympathetic to the anti-Canada, pro-baby Joseph cause. For such quotes, one has to turn to ABC News, where we learn that

…a statement given Monday from London Health Sciences Centre where Baby Joseph has been treated since October, 2010, said…”The LHSC position is consistent with the treatment plan approved by Ontario’s Consent and Capacity Board as being in the best interest of Baby Joseph. It involves transferring home, on a breathing machine, and then placing him the arms of his family before withdrawing the machine.”

The statement goes on to say: “The transfer would not involve performing a tracheotomy, which is not a palliative procedure. It is an invasive procedure in which a device is installed in a hole cut in the throat. It is frequently indicated for patients who require a long-term breathing machine. This is not, unfortunately, the case with Baby Joseph, because he has a progressive neurodegenerative disease that is fatal.”

Seems much less sinister and anti-baby than the conclusion one would have gathered to be true had one read only the FOX News page on the story. The Canadian health care system listened to the diagnosis of baby Joseph’s doctors (that his condition was terminal, irreversible, and near its end), and was therefore willing to pay for palliative care including even a transfer with a ventilator to his home before removing the ventilator so that he could die in the arms of his family. The reason, as you can see from the above quote, Canada’s health care system refused to authorize the tracheotomy is that it was neither palliative nor had any chance at “curing” baby Joseph.

The ABC article also notes, crucially, that the Canadian medical system (and government) objections ceased immediately “after Priests For Life offered to pay for Baby Joseph’s medical costs.” As soon as the issue of payment was resolved, “the infant was able to get the tracheotomy on March 21. The cost of the jet to the hospital, chartered with Kalitta Air, was donated to the family.” In other words, prior to that time, the Maraachlis had been attempting to have the tracheotomy performed through the Canadian health system, at its expense.

I have absolutely no problem with anyone spending their own money to prolong their life, extend their penis, transplant their hair, whatever medical procedures they wish that are elective. And, contrary to what both Priests for Life and (apparently) FOX News would like you to believe, neither did the Canadian government. What they objected to was paying for baby Joseph’s tracheotomy. It is here where baby Joseph’s case begins to diverge significantly from Terri Schiavo’s, and the divergence can be attributed to the difference in the two countries’ medical insurance/financing systems. Baby Joseph, being born to Canadian parents, is subject to that country’s laws regarding health care, and it is those laws which put his parents in the position of having to fight against the decision of their son’s doctors not – as PFL’s quote has it – that baby Joseph’s life and his condition “wasn’t worth the trouble,” but that it would not either help him “get better” or ease his burden in the final stages of his disease enough to involve taxpayer money to pay for it.

It is also here where the vast majority of conservative paranoia (and misinformation) about “government death panels” comes into play. If a tracheotomy, conservatives would point out, allowed baby Joseph to breathe on his own for the moment, then surely that’s an improvement, however marginal or incremental. It is therefore autocratic and possibly evil for a panel of government bureaucrats to decide unilaterally that he cannot have this treatment, such conservatives would conclude. Only, that’s NOT what the government panel decided. As soon as the Maraachlis (or, more accurately, PFL’s fundraisers) agreed to shoulder the costs of flying baby Joseph to St. Louis as well as the cost of his tracheotomy, the government relented in its opposition to the procedure, and it went ahead as scheduled. For a group of people, and a political philosophy which is so reliably spittle-flecked in the vehemence of their outrage when it comes to the idea of people leeching off public services at taxpayer expense, the right wing sure seems to have a blind spot when it comes to the unborn and those at or near the very end of their lives. Consider, for example, that in the Schiavo case, Terri remained on exceptionally expensive feeding tube and ventilator care round the clock from the day of her collapse in February of 1990 until her death in March of 2005. Even if one removes the period of time during which her fate was being litigated and contested – say, from about January 2000 onward – that is still just under a decade’s worth of incredibly expensive care, for a woman whose primary doctor diagnosed persistent vegetative state almost exactly one year after her collapse.

That’s nine years of care AFTER the unanimous conclusion of the medical community that Terri was not going to get better. Regardless of whether the state paid for that care, or whether it was borne by private insurance which Terri had at the time of her collapse, it’s unquestionable that the cost of keeping Terri alive all those years was borne by either the taxpayers of Florida or the ratepayers of whatever insurance plan Terri had. The United States health care system has been the subject of much debate over the past couple of years, but one thing that’s not in debate is that we in America spend more – much more – than any other country on earth for our health care, no matter how you look at the numbers. Whether expressed as a percentage of GDP, on a per-capita basis, we pay a pretty penny, collectively, for our health care. Part
of the health care reform argument these past two years centered around the notion that while we are paying for the best care in the world, according to many measures, we aren’t getting it. But even leaving aside those arguments about quality of care, it simply cannot be denied that Americans pay much more for our health care than do the citizens of any other country.

It comes down, in the end, to a simple question of priorities. Most economists who aren’t trying to sell you something will tell you that the largest driver of our unsustainable increase in government spending has to do with health care costs that continually are rising at several times the rate of other budget areas. Most other first-world nations have addressed the costs of health care by implementing, with varying degrees of success, different approaches to some form of sensible rationing of care which aims to provide the best and most appropriate care to the greatest number of people by avoiding paying for things like decades’ worth of extremely expensive, round-the-clock life-support measures for the permanently brain dead, and by limiting covered services to those deemed medically necessary by doctors themselves as well as by government review boards composed of medical professionals. That’s what Canada has done, and it’s part of what allowed them to escape the recent economic downturn which afflicted the US and many other countries.

The right in this country may like to portray this as sinister, creeping socialized medicine, with vulture-like government “death panels” deciding who lives and who dies based upon their utility to the state, but these are merely scare tactics. In Canada, as in the USA, you are welcome to all the medical care you wish to spend money on, whether it is medically indicated by your physician or not. Baby Joseph was never being “forced to die by the state,” they simply weren’t willing to pay for his parents’ desire to provide him with certain forms of care at taxpayer expense, in the way that either the taxpayers or the ratepayers of Florida WERE forced to shoulder the increased costs in their own taxes/rates from paying for over a decade of round-the-clock care for a woman whose brain was half the weight of what it should have been, and much of that was liquefied. Which, ultimately, is crueler?

2 thoughts on “Baby Joseph and the Canadian Death Panels

  1. As for your ‘Post Tenebras Lux’, after reading your self-esteemed world view of health care ethics, I’m convinced that what you meant to say was:

    “Lucerna corporis est oculus. Si ergo fuerit oculus tuus simples, totum corpus tuum lucidum erit; si autern oculus tuus nequam fuerit, totum corpus tuum tenebrosum erit. Si ergo lumen, quod in te est, tenebrae sunt, tenebrae quantae erunt!”

    To save you the trouble of looking it up:

    “The eye is the lamp of the body. So, if your eye is sound, your whole body will be full of light; but if your eye is not sound, your whole body will be full of darkness. If then the light within you is darkness, how great will the darkness be!”

    All people certainly have the right to offer their ungodly and mammon serving opinions regarding health care ethics as the center of the universe, especially after rising from the dead and appearing to their world view fans.

    Shame on me.

    The problem is, opinions and mammon cannot save us!

    Only Jesus Christ can! And He shed His blood for each and every person who has been called forth into existence from our nothingness – unique, precious and unrepeatable!

    God created knees for the express purpose of humiliating our fallen human nature and diabolical perspective on Life issues – such as the Democratic and Planned Parenthood notion of calling abortion (killing unborn children) simply “A woman’s choice” or “A woman’s right.”

    “Father forgive them, for they know what they do.”
    Life is short, eternity is forever!

    But ALAS!, God’s name is MERCY – and He will forgive!

    “Though your sins be as scarlet, they shall become white as snow.” That of course goes for me as well.

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