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As a few may note, usually I write about environmental catastrophes-in-the-making. But over the last two months I've been completely absent, on a rollercoaster called "cavernoma."

Two years ago my family and I were given Permanent Resident status in Canada -- we bought a house and some fairly pristine land in rural Nova Scotia, and have begun the process of shifting to a sustainable, predominantly agrarian lifestyle up north.

A month ago, my 20-year-old daughter was diagnosed with a rare brain malady -- a "cavernous malformation" pressing against her brainstem. A cavernoma is functionally akin to a benign tumor. Located in the middle of her brain, it required delicate brain surgery. Consequently, my wife and I got a chance to see the Canadian healthcare system from up close. And very personally.

Below is an overview of what we learned, having lived with both a "great" US HMO, and now a great Canadian HMO, known locally as small-m "medicare."

Spoiler alert: this story has a truly happy ending.

Contextual background: My wife and daughter have been living in Nova Scotia for five years (during my wife's Master's program, and then as a Resident) -- while I stayed in the DC area, continuing my work (and a necessary salary) at a nonprofit research organization. I've been spending more and more of my time in Nova Scotia, telecommuting when I can, using vacation time when I can't.

A cavernous malformation -- aka "cavernoma" or "cavernous angioma" -- is a pocket of blood/fluid mass that can, at any moment, begin to "bleed out" -- putting additional pressure on whatever it's near.

In my 20-year-old daughter's case, a recent "bleed" meant that her brain stem -- which controls the "lizard brain" functions like respiration, heartbeat, balance, and fundamental kinesthetic sensation -- was being pressured, making her dizzy, numb on her left side, and prone to passing out for no good reason.

Initially, the diagnosis (at a rural Canadian emergency room) was Manier's disease -- an inner ear inflammation -- and her dizziness was designated as "hysteria." My daughter (a willful, spunky, strident, purposeful spirit, thank goodness) thought it was bullshit, but took the five-day course of drugs anyway.

Once it became clear that this diagnosis didn't match the facts, and we pushed for more response, the system kicked into gear. Another emergency room doctor (with the help of my wife and daughter), noticing the one-sidedness of the numbness, requested a CAT scan, which showed a mass on her brainstem; this was followed in short order (a handful of hours) with an MRI, which was then transferred to the neurospecialists in Halifax for diagnosis.

Though there was some waiting -- some 30+ hours -- it was the result of the chief neurosurgeon being called away for emergency surgery. Once she had seen the MRI, she spent as much time as we needed, to explain what she was seeing, what was required, and what our options were.

My daughter, like my wife and I, has become a Canadian Permanent Resident, so she has basic HealthCanada coverage. Once the system was provided with her Health number, the rest went forward completely unimpeded with questions of coverage, insurance, or "ability to pay" as we dealt with specialists.

The preliminary plan was to delay the surgery (going in through the back of her head, into the very middle of her brain, to remove the cavernoma) until the irritation and swelling of the "bleed" went down -- this to give the operation the best chance of success. Like many things, this was frustrating, but also sound medical advice (according to a number of doctors and specialists within our extended family, with whom we were privileged to be able to confer).

Once it became clear (about a week later) that my daughter's condition was actually getting worse (trouble swallowing food, worse dizziness, further numbness), we received on a Tuesday the message that surgery was scheduled for the immediate upcoming Thursday, at 6:30 am.

What that set in motion was an array of events, of course, all emotionally fraught -- a 12-hour surgery by a world-class surgeon, followed by another day on the "armored" breathing tube in the ICU, followed by another day in the ICU, breathing on her own... and then a move into standard care, with IVs and an eventual NG tube (to get her nutrition) because her trachea and epiglottis were bruised and slow to get back to "normal"...

But notably, after providing the hospital her HealthCanada number once upon admission, everything else proceeded without hindrance, and without further proof of insurance, and without obstruction. No counting of band-aids, no "we'll have to see if you're insured for that drug," no tabulating of disposable icepacks.

Need a blood test? It's done, without bureaucratic hindrance. Need a real-time X-ray swallow test? It's just scheduled, no need to have a patient insurance interview.

The doctors, the nurses, at every stage (in pre- and post-surgery, in the ICU, and in the recovery ward) all took what time and effort was required by the patient's need for recovery, not by the insurer's ideas of insurable procedures.

We were constantly dumbfounded by the raw time that was given by specialists, surgeons, nurses, nurse assistants, almost universally. Nine days after the surgery, her neurosurgeon came by to check in (as she or her associate surgeon has done daily since the operation), to release my daughter. The neurosurgeon not only answered whatever questions we had, but consciously waited until first my daughter, then my wife, and then I had said "that's all the questions I have" before taking her leave.

The motivator in this system is the patient, not the insurance, the cost, nor the potential liability. We were able -- at every turn, and literally -- to hold our daughter's hand, participate in her recovery, even sleep beside her. We have been encouraged to keep our own records of medication, treatments, even behavior. We've developed friendships with the nurses and doctors.

Would we, with a similar diagnosis, have gotten the same treatment in the US?

I doubt it, though I could certainly be wrong. I've got great family coverage through my job; I've always leaned toward paying more for better insurance for my family, and have always gotten the top-of-the-line available coverage. So overall, I'm in a privileged position... yet I don't think the experience would have been equivalent in the US system.

Her first "bleed," we realized, had happened 3.5 years previously, when she was 17 (she said to me "did you feel that?" I said "hunh?" and she said "that earthquake.") When we took her to our high-quality US HMO, they looked at her symptoms (constant low-grade dizziness, occasional nausea, occasional numbness), did a few blood tests, and sort of shrugged: "we can't find anything wrong, we'll have to wait to see if other symptoms develop."

Because the US's privatized healthcare system is predicated on profit, enormous energies are expended confirming that the for-profit HMO, the for-profit hospital, the for-profit specialist's office, and everyone in between, all get paid -- and not paid just for the work, but paid for the confirmation process itself.

At its core, the US for-profit healthcare system has an intrinsic motivation to withhold treatment; it has a motivation to put bureaucratic barriers in front of ill patients; it has a motivation to restrict access to care, to medicine, to treatment regimens.

I shudder to think of what "out-of-policy" costs there might have been, if this procedure had been done in the US system. I would likely have been on the hook for tens of thousands of dollars.

The Canadian system is different -- it's got cost controls it needs to follow, of course, but it's primarily beholden to the citizens, not the stockholders. And this simple distinction produces dramatic differences in the way that patients are treated.

As a Canadian friend of mine said, "for life-threatening emergencies, it's great. But if you want to get your knee or hip repaired so you can play 55+ senior hockey, well, there'll be a wait."

And there lies the nub. What we experienced was a life-threatening problem. If my daughter had waited around twelve to twenty months, she could have been paralyzed, lost the ability to swallow, become something less than human, become (in fact) a drain on the Canadian economy. Therefore it made sense -- from the "triage" point of view -- to fix her.

But if the procedure is cosmetic, or "mere" quality of life, a procedure may not be prioritized. Therefore, there's likely to be frustration about "the long waits" in the Canadian system.

Let me be clear: we had no long waits for procedures. Sure, we waited from Friday to Monday to have a swallow test, during which weekend my daughter had a hospital bed, pain meds, an NG tube feeding her nutrition, and her parents immediately available. But we did not wait for any procedure that might have affected her "patient outcome."

Every healthcare system has complainers. Canadians are frustrated that they can't get their knees fixed, their scar treated, their carpal tunnel addressed... in general, people will complain if they can't get what they want when they want it.

But when push came to shove, and my daughter's functional life was on the line, I almost could not have asked for a better healthcare system response than what she received. What minor quibbles I have are a few points from perfection.

My daughter is now not only 100% in terms of mental functioning, she's rapidly recovering her full strength, and is a stronger young woman because she's faced possible mortality. We were extremely lucky: this problem was treatable, will not recur, we were blessed with a world-class neurosurgeon at a center of excellence, and we were blessed with a world-class healthcare bureaucracy.

But it also showed me the differences between a profit-based healthcare system and a people-based healthcare system.

How lucky that we didn't have to fight with the US healthcare system. I love this country, but I also admire Canada, and am learning quickly to love its approach to its responsibility as a government to its people.

I hope the US can recognize the opportunity it has for beginning to fix what's broken in its healthcare system.

Originally posted to mwmwm on Wed May 20, 2009 at 03:22 PM PDT.

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