by garciasn 5 hours ago
Semi-related: my father has complications from a motorcycle accident ~25y ago that crushed arteries in his leg coupled with diabetes (insulin / kept sugar at ~100 and his A1C was kept under 6.7 for ~15y). 6w ago had to have his toes removed due to dry gangrene; they eventually (2.5w ago) had to remove his leg below the knee because of the severe blood flow issues below the knee.
Between the toes and the below the knee amputation, there were no less than 15 different doctors and PAs / related personnel who COULD NOT COME TO A CONSENSUS. They would just tell my mother and I (PoA) the details; they refused to come up with a singular plan of action moving forward, leaving it up to us to make 'an informed decision,' something that's IMPOSSIBLE when you have to take up to 15 different opinions into consideration.
What exactly are we supposed to do as patients/family members when medical personnel cannot give reasonable paths forward and instead just throw a bunch of shit over the fence at you and tell you, "you decide what to do from here," regardless of how many VERY DIRECT conversations I had w/the 'care team' on doing better to provide a limited array of options and reasons/likelihood of 'positive outcomes'.
I'm used to dealing with a wide variety of stakeholders/SMEs in decision-making; it's my job to apply my extensive industry experience to present our clients with their options, ranked and reasoned. Doctors, in my experience and most recently with my father, clearly do NOT do that (I assume due to liability; but, no real idea, honestly). So; when dealing with LIFE CHANGING circumstances, what are we supposed to do except rely on what might be able to offer more analysis and option narrowing w/AI?
I certainly don't want to make the job of medical staff more difficult by putting out crazy theories I found on the interwebbernets through my own research, etc; but, when we're having to deal with uncertainty and insanity, what else can we do?
This lines up with my experience with my mother, though it played out differently. In her case, she would switch doctors every ~5-10 years and each time they'd basically say everything the previous doctor said was wrong. First it was "you have Lupus", second it was "actually it's some other autoimmune disease", then it was "actually whatever you had has been in remission for some time now and you've been taking brain-numming medicine for no reason." Then it was "you have cancer", "it's a rare one", and "oh turns out the brain-numming meds have a correlation with rare cancers". The cancer part was handled well (albeit unsuccessful) though. After such a bad time with rheumatologists, I was shocked by how competent people were when it came to cancer.
All of the above was intertwined with brief stints with doctors that would just berate her for being a painkiller junkie, even though she hated the stuff and just wanted to find/fix the problem.
Kind of a rant, really. I'm not sure how to tie it back into AI. I do wish we had AI at the time so that we could at least cross-check, but I also understand that doctors are already sick of patients self-diagnosing on the web and that AI probably just makes that worse. At the same time, if our medical system could catch up a bit (more doctors? less corruption/paperwork? not sure what it needs) then maybe people would be less inclined to take matters into their own hands.
I'm sorry to hear that. The accusations of drug seeking are particularly galling.
AI is absolutely a god send for patients navigating the medical system.
I know the US system is horrible and I sympathize with doctors doing their best within it. But we must admit, they are also responsible for the countless stories just like yours, and have contributed to the public's deteriorating trust of medical institutions. It's not just the insurance companies and conglomerate CEOs.
Probably liability... on the amputations I indicated and contraindicated, it's increasingly difficult to navigate trough patient perceptions while not disclosing so much as to give them rope to hang us. Some decisions are a game of probability that often we don't have clear numbers. In trauma, I have both cases where I recommended an amputation and at last minute decided to see that happened and the patient is walking with their leg today; and cases where I didn't recommend and later had to amputate as the lesion evolved. With cancer it's more straightforward, the cancer is what dictates the surgery... some cancers have poor response to other treatments, so we amputate. Some cancers had invaded the neurovascular bundle, so curative options involve necessarily amputation to get good margins. In cancer there's less doubt in the prognosis, so less chance of legal ramifications.