There is a very sad story going on that involves a terminally ill one-year-old boy in a persistent vegetative state, whom doctors give no hope of recovery.  Worse still, little Joseph Maraachli's condition is deteriorating, and both the doctors and the family know that he will die.  At the time of this writing, he may have already died. There is no silver lining to this story.  It is altogether tragic, though that word seems barely able to fit.

The doctors were unable to obtain consent to remove Joseph's breathing tube (which was keeping his airway clear of mucus), so they are seeking consent from the Office of the Public Guardian and Trustee (OPGT)  Joseph's parents want to bring their son home to die in comfort, surrounded by loved ones, and not in a hospital.  But in order to safely bring Joseph home, he needs a tracheotomy performed.  As if this story couldn't be any sadder, Joseph's parents, Moe and Nadar Maraachli went through this before, eight years ago, as their daughter had the same condition Joseph has.  Then, the tracheotomy was performed, allowing their daughter to spend her last moments of life at home.

But doctors have concluded that a tracheotomy is too risky for Joseph, and would surely cause great discomfort, pain and infection, leading to a very painful, extended death.

  • If the doctors leave the breathing tube in, Joseph will deteriorate and slowly die as parts of his brain die off piece by piece.
  • If the doctors remove the breathing tube, the fluids in his body will fill into his lungs, and he will choke and die.
  • If the doctors perform the tracheotomy, Joseph will experience a great deal of pain, get an infection, and die painfully.

Like I said, this is a terrible, tragic story, and there is no silver lining.  Joseph will die, and there seems to be no way that this story could get any worse.  One would have to be a heartless cynic to use this story to further their own ideological goals.  What kind of despicable human would exploit the desperation of the parents of a dying child? And yet....

Oh no.  Not this again.
As if on cue, the Fox News propaganda machine jumped in and attempted to re-frame the story as another reason to fear 'Obamacare.'

They've used a Canadian story before in order to scare Americans from public health care.  In the Summer of 2009, there was a story of Shona Holmes, who was suffering from a brain cyst.  She was put on the waiting list to have the cyst removed, but was unable (or unwilling) to wait for the procedure. The type of brain cyst that Holmes had was definitely bad (causing temporary partial blindness and discomfort), but would have caused no permanent injury, and was not fatal.  Fox News declared that it was not a cyst, but a brain tumor, and told American audiences that our heartless Canadian socialized medicine was willing to let the brain tumor go unoperated because it's too expensive.  A lie that Holmes was only too happy to perpetuate.

Unlike the Holmes story, this story can have no happy ending.  There is no operation waiting, at great expense, for him at the Mayo Clinic. Still, the Fox News pundit, Megyn Kelly (shown here, talking about the "news") brought Joseph's father onto her show to get his story, and afterwards had a discussion about how the Canadian Courts intervened because of a 'cost issue.'
 

Obviously, the father's story seems heart-wrenchingly desperate.  All things considered, he is being remarkably brave and thick skinned as he is trying everything and anything he can to act in what he believes is in the best interests in his son and family.

However, in the segment after Joseph's father, Kelly spoke to two others, and it didn't take long for the discussion to go where Kelly was leading:

MEGYN KELLY: Dr. London, do you think that there is something going on here in terms of Canadian health care system, which pays -- you know, they pay for all of the medical care. Do you feel like that's playing any role here?

DR. KATHLEEN LONDON: I can't believe that it would, because again, a tracheostomy is such a simple procedure, and the parents are saying they are going to care for this child at home. So I'm not really sure how this could be a cost issue or anything else. And I'm actually quite confused and wondering what details are we missing, and is there something else?

KELLY: What do you make of it, Wendy?

WENDY MURPHY: Well, look, I think it absolutely is a cost issue because putting in the tracheotomy will allow the child to live longer which costs the hospital that daily cost care. Please --

LONDON: No. They're taking him home.

KELLY: But he could come back.

MURPHY: No, but I understand. But they also then have oversight responsibilities. Whether the child were -- have a tracheotomy and stayed in the hospital or go home, they still have oversight responsibilities, which costs money every single day that that child is alive.

This is what I'm worried about with Obamacare. You know, it's not quite likely to be that bad. We don't really have death panels as people have come to understand that term. But we are going to have government agencies and panels making decisions based on cost, and that's a lot closer to the Canadian model than we've ever seen in this country. So we should be worried. It won't get this bad, but it will come close. [Fox News, America Live, 2/22/11]

This is hardly an earth shattering revelation, but it's clear that the facts don't matter to Kelly and Fox News.  The story has nothing to do with the costs incurred by our health care system, but is about the rights of the parents, the rights of an infant in a persistent vegetative state, and the knowledge and expertise of the doctors involved.  This is a discussion worth having.

The Office of the Public Guardian and Trustee (which I'm assuming is the "Death Panel" Kelly and company is referring to) is a public protection safeguard designed to intervene when the best interests of a person are not protected.  It doesn't just intervene (on request) with cases that involves patients in a persistent vegetative state, but also in matters of estates, guardianship issues, and in making substitute health care decisions (such as intervening when a person gets in a car accident, and no known next of kin is able to be reached).  The OPGT exists for one sole purpose: to protect Canadians who aren't being protected for one reason or another.

This sad case of little Joseph may fall under their scope, and they may intervene.  Whatever their decision, it's not about the costs.  If they decide that the doctors should not remove the breathing tube, or perform the tracheotomy, they will be doing so out of protection of Joseph, not in consideration of the costs.  The OPGT is an office of the Attorney General, which makes is part of the Judical branch of government.  The scope of the judicial branch cannot, by constitutional convention, encompass decisions of financial costs of the health care system, which falls under the legislative and executive branches (Canada has a fusion of powers, not a separation of powers like the US does) of the Federal and Provincial governments. That's why the judicial system exists:  It protects the laws and rights of Canadians no matter what the elected bodies decide...it is outside the scope of popular opinion, because it has to be.

If any organization were to intervene due to costs (which isn't happening), it would be the one of these branches of government, NOT the court system.  Of course, if the legislative branch were to make a decision based on the costs, the OPGT would block the decision, because when it comes to individuals constitutional rights, rights trump costs. Any discussion of "death panels" or the supposed overburdened costs of Joseph's care crowds out the serious ethical and legal discussion that needs to be made.

Make no mistake, this issue is not about our socialized medicine, or the idiotic scare-mongering of death panels.  This is a case of the rights of the family to chose the manner of death for an infant in a persistent vegetative state.  I'm not weighing in on whose voice should take precedence: the family's or the doctors'. I'm not an involved party, and I think it irresponsible for anyone to question or condemn the parents or the doctors involved.  I have as much sympathy as I am able towards all involved party, and I hope that something, anything that is not terrible comes of this, but I'm not too hopeful. This story is bad all over.

This story is gut-wrenchingly sad enough as it is, and it doesn't need cynical politicking and scaremongering from Fox News to scare people away from socialized medicine.


__________
Sources:
Media Matters
The National Post
The Calgary Herald
CTV News




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8 comments:

Really great post. Really disheartening, but very well done.

tattytiara said...
February 24, 2011 9:29 PM  

This is a well researched, thoughtful and heart-wrenching blogpost.

Thank you for exposing the venality and opportunism of FoxNews.

deBeauxOs said...
March 1, 2011 9:34 PM  

It is most definitely not well researched. Their daughter was more deteriorated than their son, received the trach, and went home and lived 6 months before peacefully dying in her father's arms.

These are the SAME DOCTORS who gave another dying child with "no hope", in the same ward in a bed beside him, a trach because "it's better if she dies at home". The mother has openly questioned this on his facebook group because her daughter was as bad as him and died shortly after being at home. She even argued against the tube because she didn't want her daughter to have it.

In many cases of "no hope" children they have argued to the "death board" to force the parents against their wishes to place trachs because it was in their best interest. Saying that it was no more painful than any other surgery, was routine and the best course of action, was more comfortable than the endo tube. Oh and yes there was a higher risk of infection but that could be treated with meds and shouldn't factor into the decision.

Canadian doctors have routinely disconnected or denied care to kids (and adults) with "no hope" and disabilities. My son for one with the amount of brain damage he had was to, at best, have spastic quadriplegia. Yes he's mainly in a wheelchair but his only "disability" is he can't walk right. He was not allowed proper therapy and was only allowed palliative therapy because intense therapy was futile. We, like many other parents here, paid for the therapy needed and he excelled. Next step is spinal surgery to cut the nerves that are preventing him from walking long periods (spasms). It was denied in Canada based on his dx, it did not matter how well he was doing or how he has overcome all obstacles and has done everything they said was impossible it was a no based on a dx written on a piece of paper. We now have to go to the USA and pay for the surgery.

This is also the same system that four times argued up and down he was "fine" and didn't need a chest x-ray only for them to do it because we wouldn't leave without one only for them to discover we were right, he had severe pneumonia. Argued once that the swelling in his face was an allergy reaction and they had no clue why his body temp and BP were low but they would give us antibiotics "just in case" they were wrong. We were phoned two days later and told he had an iGAS infection and needed to get back ASAP for assessment because the low body temp and BP were actually signs he was going into shock, the only thing they said saved him was the antibiotics we were giving him. We brought him in for blue spells and were told his EKG was "completely normal" only for the head of the ER to phone us a few days later after reviewing cases to tell us we needed to get him into cardiology ASAP because his heart was "way too fast". This is also the system that told us his hip and leg pain was because we weren't stretching him enough. It took SIX MONTHS and a routine x-ray for hip development for them to go "oops, his hip is actually dislocated".

Why not read about Annie Farlow who was killed by the hospital
http://www.whathappenedtoannie.com/index.html

Or how about Lisa Shore who the hospital suggested that her pain was "all in her head" and she should seek physiological counseling, it took 20K and a trip to a Boston hospital to get a diagnosis. Only for them to come home and one of our lovely hospitals to kill her. The coroner's inquest ruled "homicide"

http://www.lisashore.com/Media/Liberal/Liberal991012.pdf

http://www.cbc.ca/news/story/2000/02/25/homicide000225.html

Anonymous said...
March 2, 2011 6:50 AM  

Outstanding comments. very insightful.

To correct above, their daughter died in a Windsor hospital after repeated pneumonias and at the end, after chest compressions.

In this case, the hospital offered to transport the child to allow for a peaceful death in their home. They rejected.

Anonymous, leave your own agenda out of this. Once again, a brilliant article.

Anonymous said...
March 2, 2011 9:37 AM  

How about YOU stop twisting things to your own agenda because I think her parents know better than you how and when she actually died.

The hospital ONLY offered the transport to them AFTER they fought (on the 28th of Feb) and NOT before hand. They did even OFFER to transport home at the CCB. He was to have his breathing tube removed IN HOSPITAL.

Ontario Superior Court's decision to deny the Maraachli family their appeal to bring their child home to die a peaceful death. Even then the hospital made NO ATTEMPTS to tell the family they would do it in their home. It was ordered that it would be removed with their forced consent IN HOSPITAL on Feb. 21st at 10am but the family STILL withheld consent. They have asked their family members to consent for them to have the tube removed IN HOSPITAL and failed. They than moved to ask the Office of the Public Guardian and Trustee to remove it IN HOSPITAL.

It wasn't until the 28th that the hospital tried saying it was always an option. It NEVER was before that point.

Anonymous said...
March 2, 2011 4:50 PM  

Anon, just because you had a bad experience and bad doctors does not reflect on the whole Canadian system. My uncle had a car accident and was to be in a vegetative state, the doctors said. My grandmother refused to give consent to pull the plug and they gave him excellent care and rehabilitated him and he is now able to walk and lead a semi-normal life. Your experience must be painful, but it is in no way a reflection of our health system at large. We can all individually pull up anecdotal evidence, or we can look at the facts: our health care system operates as well as it can on the very limited funds it is given by successive neoliberal governments both provincially and federally. It has nothing to do with a private vs. public health care debate.

Stefan said...
March 3, 2011 7:19 AM  

There are six comments before mine, and three of them are anonymous.

I turned on anonymous posting in the hopes that people wouldn't post anonymously just to attack me (or others).

People: Post with a pseudonym....anything at all that is consistent, or will remove the offending posts.

The last anonymous poster is coming very close to violating my commenting policy on jerks and CAPS.

Steve Thoms said...
March 3, 2011 10:37 AM  

This just made me angry. Even if there are problems with our healthcare system, it's not like America doesn't have its own.

At least here if I break my arm I'm not worried about paying fees to get it fixed. There may be a wait time, but it will be free.

An American I know refused to see a doctor about his sinus/ear infection (very serious issue that was causing a lot of pain) because he'd have to pay for the visit.

When your country's health care policy is not allowing sick people to get help because they can't afford it, and you are one of the richest countries in the world, I don't care what you say, something is wrong.

And Fox News doesn't make it any better -- what codswallop, and how horrible it must be for the parents to be turned into a public example for something that has nothing to do with their situation.

Jo said...
March 7, 2011 1:39 AM  

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