4 ms·

I understand your family’s frustration but it’s hard for me to think that the only presentation (both by history and hematologically) was a Hgb of 4-5 and physi

I understand your family’s frustration but it’s hard for me to think that the only presentation (both by history and hematologically) was a Hgb of 4-5 and physicians just proceeded to transfused with no further questioning or consideration for the large number of diseases in the differential diagnosis. Did she have low platelets (thrombocytopenia)? Had she had a rash previously? Was she outdoors in areas where ehrlichiosis or rickettsia carrying tIcks are known to be endemic? I’m sorry but you provide minimal information and then dump on physicians. Yes, it’s possible that you dealt with dozens of careless physicians but what information did your wife provide to that one female physician, which triggered the battery of serologic tests, and that no other doctor could elicit in the flood of previous medical evaluations. It’s not as if your wife just shows up with vague malaise and fatigue but everything else is normal in her history and in the examination. She has a Hgb of 4-5. Was a hematologist called in? Was ID called in after she remembered that fever and rash she’d previously experienced, for example.

s1artibartfast 4y ago
The deficit of knowledge is bilateral. Sure clinicians don't know about patient risk factors, but people get things like rashes very commonly from a wide array of sources. Either way, the parent post was saying that people should inform and advocate for themselves. This is entirely consistent with your message. I agree with your greater sentiment that people place unreal expectations on their doctors. The point is that doctors are fallible and not omniscient. This is just reality, patients need to be their own advocate. Blame is beside the point.
cameronh90 4y ago
There are quite a few incompetent doctors, sadly, and they stick together and support each other. While I'm generally reluctant to bring up identity politics, it does appear that women and people of colour tend to experience this worse than others. My mum had abdominal surgery, and one night following the surgery, she felt an extremely painful tear sensation in her lower abdomen and shortly afterwards noticed a big asymmetric lump in the intestinal area. My partner is an ICU nurse and suspected a hernia so we took her to the local hospital and the doctor said it's just post-surgical swelling. It didn't go away, rather it got bigger, more painful and frequently gurgled, so we went to the GP. The GP said it's probably just because she's had kids 30 years ago (!?) and that my mum needs to get used to not looking attractive any more, and to lose weight. What followed was months of doctors visits trying to get them to even accept there was even an issue. Bear in mind, this was a significant, painful gurgling lump, around the size of a tennis ball. Yet doctor after doctor said there was nothing wrong with her and she should consider therapy and antidepressants instead. After a few more months, she began experiencing such bad pain that she couldn't walk, and finally a junior female doctor suggested she had a hernia. However, she got overruled by her senior and sent home with paracetamol. The junior doctor quietly told her to go to another hospital. We managed to convince my mum this was ridiculous and brought her to London, where she got looked at by a hernia expert, who was very concerned about her treatment thus far and sent her for a CT and - obviously - found a large hernia. Due to the time it was left untreated, the repair was very challenging with many complications. Back home again, while recovering, she was having the early warning signs of an infected surgical wound (hot swelling, pus, smell, chills etc.) and again the local hospital fobbed her off and said she's overreacting, didn't swab the wound or change the dressing and sent her home. That night, she called me incoherent and I called for an ambulance - turns out she had sepsis and nearly died. I can promise you that we made sure everyone treating her had a full medical history at every point, but they still blatantly ignored what was right in front of them. There is actually a ton more to this too - the surgery in the first place which triggered all this was due to a medical error and wasn't necessary. It's been five years so far. She's currently suing the local hospital and doctors.
- vo2maxer 4y ago
  I’m sorry to hear this and of the incredible suffering your mother and her loved ones have had to go through. I am quite aware that there is a significant number of physicians who are careless, apathetic, rushed, eager to get home after long working hours. Many are incompetent but I would venture to say that a larger number is plenty competent. It’s just gotten to a point in their career where they are “burnt out” for whatever reason and they are aiming for speed. It becomes another consumer transaction and as the patient load increases during the night, the clinician just tries to simplify things as much as possible, taking shortcuts, working under weighty incorrect initial diagnoses. Once you’re seen by that first doctor who makes what should be a tentative diagnosis, that opinion carries a great deal of psychological force. Of course this depends on the docs seniority. In your mom’s specific case, it is inconceivable to me that any trained physician would see her post-surgical history and subsequent development of an abdominal mass and not think immediately of a hernia and possible strangulation as it grew. A first-year medical student can palpate the abdomen and readily tell there is herniation through the abdominal wall. Is it reducible or not? An abdominal CT scan should be reflexive. It’s even more maddening when more than one physician misses the obvious or at least the way it sounds to me given the information you’ve provided. Physician burnout is a real alarming phenomenon with emergency room doctors having one of the highest rates. This was already an issue pre-COVID-19. I can’t help but worry about how worse it may get.
  - danachow 4y ago
    From my reading of that story what was interesting was that shit hit the fan with a post-op infection after the hernia repair. A reducible hernia isn't an automatic indication for surgery these days - and post-op risks outweighing benefits is one of the reasons why. It's also weird why the "time left untreated" would have any bearing on the repair and risk of complications - people go through life with uncomplicated hernias for years - if they're complicated they declare themselves pretty rapidly. There are many other reasons I can think of that would increase risk though. When I hear a story like this it is very hard for me to believe the entire pertinent medical history is being conveyed.
    - 4y ago
pixl97 4y ago
After seeing a relative go through hell for years of mistreatment and misidentification of Ehlers-Danlos syndrome that had not been identified earlier in life and went to specialists for a number of years with a ream of information, I just really have less faith in proper identification of anything that falls out of normal.
- haldujai 4y ago
  I think you’re hitting the nail in the coffin. As physicians were trained on the common and the deadly. We’re not that great at rare non-immediately life threatening conditions due to the nature of the discipline. We’re trained that when you hear hooves, think horses not zebras. This does unfortunately mean that patients with zebras are often misdiagnosed for a while, but that’s because our approach isn’t intended to catch every zebra (which would be impossible). The other element is to avoid unnecessary harm. Often the tests for zebras are nonspecific and overlap with other conditions (I.e. to be considered after exclusion of other aetiologies). A late diagnosis of EDS fits in the zebra categories and probably wouldn’t have been picked up until you saw a rheumatologist or vascular specialist at a centre which deals with these.

s1artibartfast 4y ago

The deficit of knowledge is bilateral. Sure clinicians don't know about patient risk factors, but people get things like rashes very commonly from a wide array of sources. Either way, the parent post was saying that people should inform and advocate for themselves. This is entirely consistent with your message. I agree with your greater sentiment that people place unreal expectations on their doctors. The point is that doctors are fallible and not omniscient. This is just reality, patients need to be their own advocate. Blame is beside the point.

cameronh90 4y ago

There are quite a few incompetent doctors, sadly, and they stick together and support each other. While I'm generally reluctant to bring up identity politics, it does appear that women and people of colour tend to experience this worse than others. My mum had abdominal surgery, and one night following the surgery, she felt an extremely painful tear sensation in her lower abdomen and shortly afterwards noticed a big asymmetric lump in the intestinal area. My partner is an ICU nurse and suspected a hernia so we took her to the local hospital and the doctor said it's just post-surgical swelling. It didn't go away, rather it got bigger, more painful and frequently gurgled, so we went to the GP. The GP said it's probably just because she's had kids 30 years ago (!?) and that my mum needs to get used to not looking attractive any more, and to lose weight. What followed was months of doctors visits trying to get them to even accept there was even an issue. Bear in mind, this was a significant, painful gurgling lump, around the size of a tennis ball. Yet doctor after doctor said there was nothing wrong with her and she should consider therapy and antidepressants instead. After a few more months, she began experiencing such bad pain that she couldn't walk, and finally a junior female doctor suggested she had a hernia. However, she got overruled by her senior and sent home with paracetamol. The junior doctor quietly told her to go to another hospital. We managed to convince my mum this was ridiculous and brought her to London, where she got looked at by a hernia expert, who was very concerned about her treatment thus far and sent her for a CT and - obviously - found a large hernia. Due to the time it was left untreated, the repair was very challenging with many complications. Back home again, while recovering, she was having the early warning signs of an infected surgical wound (hot swelling, pus, smell, chills etc.) and again the local hospital fobbed her off and said she's overreacting, didn't swab the wound or change the dressing and sent her home. That night, she called me incoherent and I called for an ambulance - turns out she had sepsis and nearly died. I can promise you that we made sure everyone treating her had a full medical history at every point, but they still blatantly ignored what was right in front of them. There is actually a ton more to this too - the surgery in the first place which triggered all this was due to a medical error and wasn't necessary. It's been five years so far. She's currently suing the local hospital and doctors.

vo2maxer 4y ago
I’m sorry to hear this and of the incredible suffering your mother and her loved ones have had to go through. I am quite aware that there is a significant number of physicians who are careless, apathetic, rushed, eager to get home after long working hours. Many are incompetent but I would venture to say that a larger number is plenty competent. It’s just gotten to a point in their career where they are “burnt out” for whatever reason and they are aiming for speed. It becomes another consumer transaction and as the patient load increases during the night, the clinician just tries to simplify things as much as possible, taking shortcuts, working under weighty incorrect initial diagnoses. Once you’re seen by that first doctor who makes what should be a tentative diagnosis, that opinion carries a great deal of psychological force. Of course this depends on the docs seniority. In your mom’s specific case, it is inconceivable to me that any trained physician would see her post-surgical history and subsequent development of an abdominal mass and not think immediately of a hernia and possible strangulation as it grew. A first-year medical student can palpate the abdomen and readily tell there is herniation through the abdominal wall. Is it reducible or not? An abdominal CT scan should be reflexive. It’s even more maddening when more than one physician misses the obvious or at least the way it sounds to me given the information you’ve provided. Physician burnout is a real alarming phenomenon with emergency room doctors having one of the highest rates. This was already an issue pre-COVID-19. I can’t help but worry about how worse it may get.
- danachow 4y ago
  From my reading of that story what was interesting was that shit hit the fan with a post-op infection after the hernia repair. A reducible hernia isn't an automatic indication for surgery these days - and post-op risks outweighing benefits is one of the reasons why. It's also weird why the "time left untreated" would have any bearing on the repair and risk of complications - people go through life with uncomplicated hernias for years - if they're complicated they declare themselves pretty rapidly. There are many other reasons I can think of that would increase risk though. When I hear a story like this it is very hard for me to believe the entire pertinent medical history is being conveyed.
  - 4y ago

pixl97 4y ago

After seeing a relative go through hell for years of mistreatment and misidentification of Ehlers-Danlos syndrome that had not been identified earlier in life and went to specialists for a number of years with a ream of information, I just really have less faith in proper identification of anything that falls out of normal.

haldujai 4y ago
I think you’re hitting the nail in the coffin. As physicians were trained on the common and the deadly. We’re not that great at rare non-immediately life threatening conditions due to the nature of the discipline. We’re trained that when you hear hooves, think horses not zebras. This does unfortunately mean that patients with zebras are often misdiagnosed for a while, but that’s because our approach isn’t intended to catch every zebra (which would be impossible). The other element is to avoid unnecessary harm. Often the tests for zebras are nonspecific and overlap with other conditions (I.e. to be considered after exclusion of other aetiologies). A late diagnosis of EDS fits in the zebra categories and probably wouldn’t have been picked up until you saw a rheumatologist or vascular specialist at a centre which deals with these.