Okay, so maybe just one more post about doctors... I know it's awfully boring. The last one was in play format to make it more palatable. But it's tedious because I feel so middle class to just now awaken to the fact that the health care system is in crisis. My ignorance is embarrassing. (So is my need to vent.)
The problem I'm going to ramble on about today is that it seems some health care professionals sometimes act out of fear of litigation, or fear of stepping on toes, or something, and it's having a damaging effect on patient care. Erin Anderson wrote about this problem in ERs years ago:
Then Anderson wrote about Toronto doctor Brian Goldman's excellent TEDTalk about doctors refusing to admit to mistakes:
The video is so good, I'll embed the 20 minute talk here. It's all about the problems that happen because of a fear of admitting our mistakes:
Goldman says we need a "redefined medical culture" where physicians know they're human, point out others' mistakes in a supporting way so everyone can benefit, and recognize that since there will always be human error, we need a system of backups to detect the mistakes. Absolutely.
I was in ER a week ago Friday, then again the following Wednesday. Both times they told me I was temporarily fine regardless the pain and swelling, and "it's better if your surgeon decides the course of action." WHY is it better? On my first ER visit last Friday, I specifically asked if there was a way to drain the hematoma - a couple of huge, swollen lumps of fluid and clotted blood in my armpit, big enough to make it necessary for me to hold my arm out from my body, with my hand constantly on my hip, throwing my body on an angle resulting in an ongoing tension headache. The report description: "a large complex fluid collection... measures 7.7 x 5.0 x 7.6 cm." Yes, that says centimetres. But the ER doctor wanted the surgeon to make the call. Just in case. Yesterday, finally able to meet with my surgeon again, he suggested we drain the hematoma, and I'm scheduled in for next Thursday. Yay!
But had the ER doctor felt comfortable making a decision in lieu of the surgeon, then I might be drained and recovering by now. I might have been able to ride my bike this weekend! Instead I'm in a state of coping and tolerating and waiting. And I'm disgusting, constantly dribbling out of an open wound in my side, which is a good thing, but a gross thing.
But I get it. As a teacher, if a student came to me about an essay for another teacher, I would be very hesitant to comment. I won't really know what the teacher's assessing with the assignment, so my advice might put the student down the wrong road. And I wouldn't want to comment in opposition to the teacher for fear of the student perceiving it as a collective undermining of the teacher's evaluation (as they sometimes hope to create). I totally get that. But if the student were struggling, and the teacher unavailable for a time, and they just need advice on something relatively clear and unequivocal, like grammar and mechanics, then I'd be up for the task. And if my decision bought them an extra week of time, then I'd be remiss if I refused to make the call on those semi-colons. I know this is not entirely analogous because it means making the call to have someone stick a long needle in me, but the decision-making analysis - to make a call on a colleague's ward - is the same.
And I really wished I had been more persuasive: complained about the pain more, suggested the surgeon probably wouldn't mind and might love that the ER doc was so competent, that kinda thing.
That ER doc also sent me for an ultrasound to check for blood clots in my bloodstream, which could cause problems. He reported that they didn't find any, and sent me home. But then my family doctor gave me a copy of the report, and the ultrasound technician indicated that that "veins are poorly seen" because of that mass of fluid. So, yes, they didn't find any clots, but apparently they couldn't really see my veins, either. When I mentioned the "poorly seen" part of my test to my medical oncologist the next day, she had them add on a doppler while they're at it next week to check blood flow. But that whole thing gives one pause. It hurts when I breathe deeply or laugh, so, of course I think I've got a pulmonary embolism! My family doctor assured me that it's just the pain from my hematoma radiating, but if I keel over between now and Thursday, avenge my death! No, actually, don't. That's the whole point here. I've seen seven medical professionals in the last seven days, so I'm bound to be fine. Right?
As a teacher, I'm ever relieved that my mistakes don't cost lives. If I give a wrong date for a philosopher, I just correct it the next day. I rarely give out a test without a missing number or a typo somewhere. I check and check, but there's usually one little error in there somewhere. We just all fix it and go on. But the fact that doctors are as fallible as I am is a little panic-inducing.
But imagine if we could be less litigious. I never call Telehealth anymore because they always always tell me to go to emerg. If they tell me I'm probably fine, then they run the risk of me dropping dead, and then getting sued. But it's a useless service if it can't actually perform the function as an alternative to the hospital triage. They need to have the medical know-how, but be as protected as moms are. Moms never get in trouble for giving medical advice. My mom wouldn't let me see a doctor unless my arm was pretty much off. She had a quick remedy for everything. It was mainly bed, a cold washcloth, and some hot lemon that she made from scratch (secret recipe: lemon juice, orange juice, and hot water) that seemed to cure everything. I think my mom could stand at the doors of the ER and convince 70% of the people there to go back to bed. We need a system that can operate like that without fear of reprisal. After some hearty mom advice: clean it off and put a bandaid on it, take a couple aspirin and go to sleep, and, the ever popular, try to go to the bathroom, they can just end every call with, "I think you should go back to bed, but it's ultimately up to you," to shake off some responsibility.
Or maybe I just need my mom right now. Over twenty years gone, and I'm still at a loss to figure out what to do without her. Anyway...
Beyond risking actually making a decision, how the doctor reacts makes a significant impact. We are all human, and we pick up on cues. If they seem annoyed at such a petty case, like the ER doctor did, then it affects how much the patient might complain. If they openly express shock at what they're seeing, like the CCAC nurse and my family doctor did, then they can make a patient absolutely terrified that they're about to drop dead. Many doctors have offered me options stone-faced, making it all my responsibility. I hate that! But if they don't, then they get blamed for a bad call.
The patient makes a difference too. There are all sorts in the ER. As suggesting in the TEDTalk, a hint of alcohol changes everything. But also being a trooper and hiding pain stoically is a bad idea. Being loud and abusive takes up everyone's time and patience, but being completely silent and complacent doesn't work either. You have to be just the right amount of a pain in the ass to get treated instead of just being sent home with some Advil.
When I saw the surgeon after my dramatic week, he seemed a little bit wary of me at first, like he thought I'd be angry with him. He kept thanking me for my patience in all this, and apologizing for how it all went. Apparently all it took to open a little blood vessel was too much arm movement in the first day or two after surgery. I wish I had known why it was important to not move the arm. It would have made a difference for sure. I was careful not to lift anything, but I made myself a salad on day two, and cutting vegetables involves a lot of little motions even though I didn't bear any weight. I was disappointed he couldn't just lance this mass and get it over with, but one more week and one more procedure, and I should be on the mend.
My medical oncologist is so warm that her flip-flops on my case can easily be forgiven. She sounds just like Demi Moore, and she always touches my knee just so. She originally told me not to do the surgery at all because the chances of the cancer having spread were about 1%. Then, a couple months later at a random check-up, she was adamant that I have surgery immediately because she recalculated and found the chances were actually closer to 25% or so. And she was just so sure. And yesterday she told me they were all clear. No sign of cancer anywhere. Yay.
It's all so bittersweet. Maybe it's just that I love to complain, and hurray I don't have cancer and all, but... I was very close to never having this surgery in the first place. Most of the doctors I saw told me there was no point. Then she convinced me. And then the surgeon shook his head at the naysayers. And then I did it. Now that I have, and found out I didn't need to (except for peace of mind), I will have to worry about lymphedema and infections and any minor thing happening to my left arm for the rest of my life. Apparently, getting lymphedema after this surgery is a total crap shoot. There's no rhyme or reason to it, so my surgeon told me to just enjoy myself. Go backwoods camping and hiking, but be just a little more vigilant about cleaning bug bites or minor scrapes or cat scratches. And keep moisturized to avoid skin peeling around the cuticles. And always use sun lotion. And I am so bad at doing all that!! It means finally breaking my revolting habit of biting my hangnails off! And I still have to take the estrogen blockers, which give me impressive hot flashes. The alternative to the surgery was knowing that the cancer might spread and having to check for recurrences in what's left of my chest.
Holy buyer's remorse, Batman. At least it was all free.
Ack, it's always something! If it's not one thing, it's another. Either you risk having cancer, or you risk having lymphedema. Either way, we're all just bags of bones trying to extend our stay here as long as possible. I'm just grumpy because I couldn't ride my bike on this glorious day!
ETA: Apparently overcapacity at my local hospital and others is becoming an election issue. I wrote this in response:
The problem I'm going to ramble on about today is that it seems some health care professionals sometimes act out of fear of litigation, or fear of stepping on toes, or something, and it's having a damaging effect on patient care. Erin Anderson wrote about this problem in ERs years ago:
An Ontario study published [in 2011], which looked at 22 million patients visits from 2003 to 2007, found that the longer patients waited in a crowded emergency room – only to be discharged and sent home – the more likely they were to die or be admitted to hospital within seven days. That's disconcerting when we know that more Canadians, unable to find family doctors, are using the ER as an alternative. The problem may get only worse.I was so taken aback with how crowded the hospitals were. A five hour wait seems to be normal now. And my experience was to just be sent home only to be sent back by my family doctor five days later.
Then Anderson wrote about Toronto doctor Brian Goldman's excellent TEDTalk about doctors refusing to admit to mistakes:
“The culture of medicine has an almost immunological response to error: The first instinct is to send out the antibodies and try to contain the contagion and get rid of it,” Dr. Goldman says, citing a survey of 1,800 American physicians released this month that found 20 per cent had kept mum about a mistake. Clearly they fear lawsuits, but that's not all. “Underneath is this terrible insecurity that many physicians feel, that they'll be caught out on a mistake and people will find out that they are not perfect, and somehow admitting you make mistakes is the first step in being asked to leave the profession. … We're ashamed to talk about it.”That the second ER doctor I saw actually insisted on a chaperon, a random nurse, to come in while he examined my armpit, illustrates dramatically the fear of lawsuits. We need to get back to trusting one another. It's hard, though, because doctors do make mistakes. What do we do about that?
The video is so good, I'll embed the 20 minute talk here. It's all about the problems that happen because of a fear of admitting our mistakes:
Goldman says we need a "redefined medical culture" where physicians know they're human, point out others' mistakes in a supporting way so everyone can benefit, and recognize that since there will always be human error, we need a system of backups to detect the mistakes. Absolutely.
I was in ER a week ago Friday, then again the following Wednesday. Both times they told me I was temporarily fine regardless the pain and swelling, and "it's better if your surgeon decides the course of action." WHY is it better? On my first ER visit last Friday, I specifically asked if there was a way to drain the hematoma - a couple of huge, swollen lumps of fluid and clotted blood in my armpit, big enough to make it necessary for me to hold my arm out from my body, with my hand constantly on my hip, throwing my body on an angle resulting in an ongoing tension headache. The report description: "a large complex fluid collection... measures 7.7 x 5.0 x 7.6 cm." Yes, that says centimetres. But the ER doctor wanted the surgeon to make the call. Just in case. Yesterday, finally able to meet with my surgeon again, he suggested we drain the hematoma, and I'm scheduled in for next Thursday. Yay!
But had the ER doctor felt comfortable making a decision in lieu of the surgeon, then I might be drained and recovering by now. I might have been able to ride my bike this weekend! Instead I'm in a state of coping and tolerating and waiting. And I'm disgusting, constantly dribbling out of an open wound in my side, which is a good thing, but a gross thing.
But I get it. As a teacher, if a student came to me about an essay for another teacher, I would be very hesitant to comment. I won't really know what the teacher's assessing with the assignment, so my advice might put the student down the wrong road. And I wouldn't want to comment in opposition to the teacher for fear of the student perceiving it as a collective undermining of the teacher's evaluation (as they sometimes hope to create). I totally get that. But if the student were struggling, and the teacher unavailable for a time, and they just need advice on something relatively clear and unequivocal, like grammar and mechanics, then I'd be up for the task. And if my decision bought them an extra week of time, then I'd be remiss if I refused to make the call on those semi-colons. I know this is not entirely analogous because it means making the call to have someone stick a long needle in me, but the decision-making analysis - to make a call on a colleague's ward - is the same.
And I really wished I had been more persuasive: complained about the pain more, suggested the surgeon probably wouldn't mind and might love that the ER doc was so competent, that kinda thing.
That ER doc also sent me for an ultrasound to check for blood clots in my bloodstream, which could cause problems. He reported that they didn't find any, and sent me home. But then my family doctor gave me a copy of the report, and the ultrasound technician indicated that that "veins are poorly seen" because of that mass of fluid. So, yes, they didn't find any clots, but apparently they couldn't really see my veins, either. When I mentioned the "poorly seen" part of my test to my medical oncologist the next day, she had them add on a doppler while they're at it next week to check blood flow. But that whole thing gives one pause. It hurts when I breathe deeply or laugh, so, of course I think I've got a pulmonary embolism! My family doctor assured me that it's just the pain from my hematoma radiating, but if I keel over between now and Thursday, avenge my death! No, actually, don't. That's the whole point here. I've seen seven medical professionals in the last seven days, so I'm bound to be fine. Right?
As a teacher, I'm ever relieved that my mistakes don't cost lives. If I give a wrong date for a philosopher, I just correct it the next day. I rarely give out a test without a missing number or a typo somewhere. I check and check, but there's usually one little error in there somewhere. We just all fix it and go on. But the fact that doctors are as fallible as I am is a little panic-inducing.
But imagine if we could be less litigious. I never call Telehealth anymore because they always always tell me to go to emerg. If they tell me I'm probably fine, then they run the risk of me dropping dead, and then getting sued. But it's a useless service if it can't actually perform the function as an alternative to the hospital triage. They need to have the medical know-how, but be as protected as moms are. Moms never get in trouble for giving medical advice. My mom wouldn't let me see a doctor unless my arm was pretty much off. She had a quick remedy for everything. It was mainly bed, a cold washcloth, and some hot lemon that she made from scratch (secret recipe: lemon juice, orange juice, and hot water) that seemed to cure everything. I think my mom could stand at the doors of the ER and convince 70% of the people there to go back to bed. We need a system that can operate like that without fear of reprisal. After some hearty mom advice: clean it off and put a bandaid on it, take a couple aspirin and go to sleep, and, the ever popular, try to go to the bathroom, they can just end every call with, "I think you should go back to bed, but it's ultimately up to you," to shake off some responsibility.
Or maybe I just need my mom right now. Over twenty years gone, and I'm still at a loss to figure out what to do without her. Anyway...
Beyond risking actually making a decision, how the doctor reacts makes a significant impact. We are all human, and we pick up on cues. If they seem annoyed at such a petty case, like the ER doctor did, then it affects how much the patient might complain. If they openly express shock at what they're seeing, like the CCAC nurse and my family doctor did, then they can make a patient absolutely terrified that they're about to drop dead. Many doctors have offered me options stone-faced, making it all my responsibility. I hate that! But if they don't, then they get blamed for a bad call.
The patient makes a difference too. There are all sorts in the ER. As suggesting in the TEDTalk, a hint of alcohol changes everything. But also being a trooper and hiding pain stoically is a bad idea. Being loud and abusive takes up everyone's time and patience, but being completely silent and complacent doesn't work either. You have to be just the right amount of a pain in the ass to get treated instead of just being sent home with some Advil.
When I saw the surgeon after my dramatic week, he seemed a little bit wary of me at first, like he thought I'd be angry with him. He kept thanking me for my patience in all this, and apologizing for how it all went. Apparently all it took to open a little blood vessel was too much arm movement in the first day or two after surgery. I wish I had known why it was important to not move the arm. It would have made a difference for sure. I was careful not to lift anything, but I made myself a salad on day two, and cutting vegetables involves a lot of little motions even though I didn't bear any weight. I was disappointed he couldn't just lance this mass and get it over with, but one more week and one more procedure, and I should be on the mend.
My medical oncologist is so warm that her flip-flops on my case can easily be forgiven. She sounds just like Demi Moore, and she always touches my knee just so. She originally told me not to do the surgery at all because the chances of the cancer having spread were about 1%. Then, a couple months later at a random check-up, she was adamant that I have surgery immediately because she recalculated and found the chances were actually closer to 25% or so. And she was just so sure. And yesterday she told me they were all clear. No sign of cancer anywhere. Yay.
 |
| Stage 3 Lymphedema |
Holy buyer's remorse, Batman. At least it was all free.
Ack, it's always something! If it's not one thing, it's another. Either you risk having cancer, or you risk having lymphedema. Either way, we're all just bags of bones trying to extend our stay here as long as possible. I'm just grumpy because I couldn't ride my bike on this glorious day!
ETA: Apparently overcapacity at my local hospital and others is becoming an election issue. I wrote this in response:
I'm glad someone's tracking this. It's a mess in there! We need way more money in health care to make sure it rivals the best in the world. But we also desperately need better organization in the system so there's less duplication of services and way less of a run-around trying to get the right treatment. I need to see a specialized physiotherapist that I can only get with referral from my medical oncologist, but I need a referral from my family doctor to see HER, so I'm looking about 4-6 months of waiting before I might actual get into physio so I can deal with an issue that needs immediate attention. I'm actually using Google for all my medical needs! It worked great to help me figure out how to build a studio in my backyard, so this should be fine! This is ridiculous.
4 comments:
The only way to correct mistakes, Marie, is to admit them in the first place.
Yes, that TEDTalk is excellent for elucidating the barriers to that and providing actual solutions.
You're caught in a grinder, Marie. My daughter is enduring a seemingly endless medical condition that leads to test upon test with no effective solutions. Because she's young and reasonably fit a succession of doctors and specialists, unable to find a remedy, wrote it off to anxiety. Then she was sent to a rheumatologist, a woman, who noticed the blood work revealed a major anomaly that meant this had nothing to do with anxiety. She said young female patients are often dismissed with diagnoses of anxiety and then she wrote letters to my daughter's GP and her specialists basically saying, "hey guys, you can't ignore the blood work. this is not anxiety."
So now, more tests.
I'm so sorry to hear that. It's always worse when it's your child. There has to be a better way with more transparency and open discussion between colleagues to make the system more effective.
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