Baby Kaylee Brings to Light the Danger of Doctors not knowing how to say, "I Don't Know"

I'd like to preface my remarks by saying I've never liked Sick Kids Hospital. From the first time I encountered the evil nurse who twisted my broken arm to get it into the right position on the x-ray machine, I've rarely encountered anything redeeming at that hospital. The resident who plastered my arm is the closest. Nice guy, created to look after kids, a rarity.

And so it didn't surprise me to read about baby Kaylee. I said nothing to anyone about my thoughts until someone reflected that her parents ought to have kept this all private. I could not keep quiet at that. The problem we have as a society is that we don't know what goes on behind the closed doors of hospitals and doctors' offices until the day we're thrust through that doorway and the door slams shut behind us. As healthy people, we see only the big, dramatic stories of hope and heartache, the kind that fit a Hollywood plot, but we don't see the day-to-day fear and conflict created by the medical machine that thinks it knows all, but does not, that thinks it doesn't need to spend the time to listen and talk to the patient, that doesn't understand that the patient is ultimately responsible and must be part of the health care team.

Kaylee's parents were right to bring their terrible situation into the open, to force the doctors to rethink their position, to force a fearful public to see what happens, to get people talking.

The doctors thought they knew exactly what would happen to Kaylee; they had preconceived ideas about what kind of transplants were OK despite the apparent changes in protocols made by the Canadian Blood Services in the last few years; and they decided for the parents the end result. The problem is that no one knows very much about the brain. Doctors have this nasty habit of telling you, with absolute conviction, what is going to happen to you when you have anything wrong with the brain, and then are floored when it doesn't happen.

I think of that relatively recent story -- a person wakes up after decades, and everyone pronounces it a miracle. Yet back in the 1980s, when I was studying neurophysiology, scientists already knew of a cell in the brain whose specific task was to repair brain damage. It acted like a healing bridge through which neurons could regrow and reconnect with each other, meaning a vegetable may not always be a vegetable. The only problem with the cell was it acted very, very slowly, slower than frozen molasses one could say. So the person waking up after decades is not unforeseen at all, and the aim of scientists ought to be how do we speed up that cell? Not how much bad news we can heap on a person's head.

And then I learnt that Kaylee's breathing problems only happened at night, sort of like sleep apnea. And I wondered why they would use an invasive method like a respirator, which introduces the problems of infection, to solve a part-time problem that the CPAP machine is designed the help. The CPAP, being non-invasive, is safe and is used only when needed. Aren't there CPAPs for babies or toddlers? It's like they chose a sledge hammer when a tap would do. And so having chosen an extreme life-support method to keep her breathing, Kaylee's doctors were apparently certain she was going to die and when once taken off it; they convinced the parents she was going to die. But how could they? The brain is too mysterious, too much the unknown for anyone to predict exactly what is going on in it and when it's going to happen. They had no idea whether she was going to take 30 minutes, 2 hours, or decades to die.

And that was proven by the next morning when Kaylee continued to breathe on her own, the radical little girl.

Doctors need to learn three words: "I don't know." They need to practice them in the morning, every morning, before they head off to meet their patients. And they need to use them as a driver to inform themselves better and their patients about whatever problem they're dealing with in order to turn that "I don't know" into an honest "I know." The biggest obstacle to good care is that doctors don't know those three big words and so are unwilling to learn from unconventional sources like their patients, like non-physician or non-surgeon colleagues, and even like foreign research to change that status. And we the patients suffer.


Aerodoq said…
Hmmm, a bit harsh perhaps. Although I've been disappointed by the performance/behaviour of doctors I think a large part of the problem is that we, as a society, hold doctors up to an impossible standard.

The body is complicated. There is perhaps no other thing in the world that has been more studied than the human body, and there is much that doctors don't know. The best that they can do in many circumstances is offer their best opinion. And, sometimes, they are wrong.

In this case, I'm certain it wasn't the decision or the opinion of any single doctor. I'm sure a team of doctors got together and discussed the case, and in the case of being at TO's Sick Kids, by definition it would have been a team of the best pediatric doctors in the country and certainly one of the best in the world.

And they got it wrong.

But we'll never know how wrong they got it! I mean, if there was a 99% chance that this poor child was going to die, it only takes that 1% for the doctors to be wrong. Certainly, the best thing for the parents and everyone involved was to be told what, in the best opinion of the best experts in the country, was going to happen.

But, how can we expect them to be right all the time? You say that doctors need to learn "I don't know" but it seems to me that this was a case of "in our opinion, here's what's likely to happen".

Having doctors say "I don't know" is rather like having them give up on trying to solve a problem.

Now, my beef is with doctors that find "answers" to problems and then lose interest in following up.
"Having doctors say "I don't know" is rather like having them give up on trying to solve a problem." -- Perhaps, but one of the things I learnt when researching my book about why my father was so popular was that he wasn't afraid to say "I don't know" and he wasn't afraid to spend time with his patients understanding their needs, fears, and problems and helping them understand their condition as far as he understood it. He was also not afraid to look for answers beyond the usual sources -- after all he discovered the role of chromium by reading up on animal studies!

From your comment, I can now see why some docs would use that as an excuse to give up. Perhaps the real problem is how too many don't want to spend the time to understand and solve the problem, or if insoluble, work with the patient to adjust.

As for Sick Kids, I've seen and heard too much to have much respect for the doctors there. I also doubt they're the best pediatric docs in the country; they just have that reputation.

They did get it wrong, you're right there! If you read Rosie's article (I linked to it in my post but I'll copy it here again: ) you get a sense of how the parents feel about what happened and how the docs were unwilling to learn about Joubert's, relying on their own inadequate knowledge. Having had waaaayyyy too much personal experience as a patient, I can tell you it's a happy day when doctors DO say "in my opinion" and then take the time to discuss it with you and learn from other sources.

You're right, the body is complicated, but medical training is inadequate to equip new docs with the knowledge they need to keep up with what we're learning. My father back in the 1950s and me as a B.Sc. student decades later learnt more about basic human physiology than medical students have for the past two decades, at least. How can you physick a human if you don't understand the basics fully?

The worst part of it is that more and more, specialists see the body as a bunch of parts, and if you happen to have a problem in the engine (brain) or many parts (like heart and lungs), you're screwed because no doc seems to understand the whole, just their own part, and they don't talk to each other either, even when in the same friggin hospital.

Thanks for your thought-full comment!
Aerodoq said…
Hey Shireen,

I read through the post you linked. I don't draw much from it though -- it's commentary from someone removed from the situation; interesting but as much speculation as anything else. I'm sure there was conflict and confusion between the parents and the doctors. How could there not be? The doctors usually end up being cold and emotionally uninvolved while the parents were at the other end of the extreme. In normal situations between doctors and patients, there tends to be poor communication -- I can only imagine that in this circumstance that communication was even more difficult.

Communication is the biggest thing I think all doctors (and lawyers, engineers, and pretty much anyone else, but especially people who claim to be experts in any particular field) need to work on.

I've had four friends go through paediatrics in med school. First let me say that, wow, while all technically very good, communication skills is clearly not the biggest filter on the med school interviews. But it's also given me an interesting window into how the medical system trains new doctors in Canada. Very problem oriented. And a considerable tendency for them to specialize. Simply completing med school is more like completing high school. Doing a specialty is like completing university. And in doing a specialty it seems they become even *more* focused on the parts and not the whole.

Communication between the doctors seems to be as much as an issue as communication to the patients in situations involving specialists.

At any rate, I doubt we'd be having this conversation if the outcome was "as expected". I just wonder how unlikely this outcome was.

Anthony: I'm enjoying this conversation! You're so right, communication is so important, for any profession, but particularly medicine where one's life can hang in the balance. I don't know what it's like in BC, but in Ontario OHIP doesn't encourage doctors to spend time with patients. People say that salaries are the answer, but doctors on salaries (like in the UK) have a habit of spending less effort on their patients. They take the easy road.

We're in an era where medicine knows enough to help people live but not enough to cure them. So OHIP needs to change its payment structure to reflect the need of patients with chronic illnesses so that doctors can earn enough to spend the time and effort needed to figure out difficult, chronic, morphing problems.

You've hit the nail on the head with medical school training, the lack of communication and interpersonal training and lack of being able to see the whole. The other thing missing too is nutrition. Nutrition is so important in helping people either recover from trauma or have good quality of life. Or even "cure" conditions.

Docs not talking to each other is beyond frustrating!

I got the feeling Rosie was being circumspect due to legal reasons, but reading her column, I gathered that the experts in the US would've predicted the outcome. It was only because Kaylee took a turn for the worse that they started believing the Sick Kids staff about her life expectancy. Unfortunately, chronic problems are like that, up and down and up.

On a side note: when it comes to brain issues, I have found that the medical establishment here is so backwards, it's not funny. I am able to read what you wrote because of psychologists and their treatment methods not because of rehab or docs (reading still a big problem though). My doc did encourage me to relearn how to write through an online writing course as medical rehab was very limited. Medicine can help with the obvious -- formation of letters, reading letters -- but not with comprehending words or being able to remember from word to word and learning. That's a complicated brain process, involving several areas. I also found more online help from US sources than Canadian. So it doesn't surprise me that Kaylee's parents found more up-to-date practical help from US experts than docs here. Still, it's inexplicable to me as to why Canadian medicine is so far behind.
staceymacdance said…
Shireen: I have to say that I love your article. I have a son that is 2 1/2 with joubert syndrome and has many of the same issues with the breathing situation. What I don't understand is how these doctors can be told over and over again that these problems are common in JS children and it is not as severe as them are making it out to be, and they still say that she is going to dies and that they should just stop feeding her because there money and time would be better spend on another child who has a better chance of living.

Am I wrong or are doctors supposed to be there to save lives, any and all lives possible. Not to pick and choose the ones that they want to save.

I strongly agree that most docs communication skills suck, you would think that with all that money that they would be able to take a class or something.

I the case of JS children, as with any other extremely rare disorders, Docs need to talk to the parents about the issues because as I have learned with my son. I know a hell of a lot more about JS then they do because I live with it every day.

I am so happy that you are so honest when it comes to the important issues and will just put it out there. And for all the people out there that are criticizing the parents for any dicisions that they have made need to step back. Because until you are in a position similar to theirs you have no right to judge. I have been there and I know I have made dicisions that I never thought I would have before I was put in that situation. SO back off people.
patrick said…
I'd use one word to describe most doctors: HUBRIS