Re: Guest Post - "Shared" Cancer Decision Making


In the United States, this will be about explaining insurance coverage to the patient.

Posted by: Moby Hick | Link to this comment | 07-30-20 5:28 AM
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Shared-decision making is one of those things that sounds so great in theory but feels useless once it encounters administrative bureaucracy.

In my organization we are judged on the percentage of our patients who get recommended care for cancer screenings or statins for diabetics. The individual doctors get a pass if they tried to talk to the patient but they declined.

So there's an automatic phrase "the patient declined after a discussion of the risks benefits and alternatives using a process of shared decision making."

Some huge portion of the time you see that phrase, no meaningful discussion happened. Just - don't want a pap, colo or stool testing.

It's just another metric to check off. Meanwhile, nobody is really engaging with the Muslim women at a community health center who are uncomfortable with cervical cancer screening or offering alternatives like self-collected HPV testing.

"I told them what the test was for, and they declined."

Posted by: Pretty obvious who this is but pres | Link to this comment | 07-30-20 6:06 AM
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This seems like a good process if you have a lot of relevant knowledge and informed friends/family/strangers on your blog. But that's not everyone and would tend to be in already privileged groups. Also, isn't making these decisions why people go to med school? Granted, medical people have biases about treatment but I got my education in something else. If I wanted to make medical decisions, I would have got to medical school.

Anyway, I couldn't budge the doctors about getting induced even though I cited my work and was okay with the odds. I had all the options, until I wanted something different.

This is really just me being cranky about financial and tax stuff. At least medical stuff is somewhat interesting so I would read about it in my free time.

Off to read the article now!

Posted by: hydrobatidae | Link to this comment | 07-30-20 7:10 AM
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And having started reading, I bring up my PhD and biology background early in my medical appointments and the change in doctors' behaviours and attitude is noticeable. I'm very thankful for my privilege and am horrified to think what treatment is like for those who can't throw those achievements around. I can only assume that an older white cis male with a PhD gets even better, less paternalistic treatment.

Posted by: hydrobatidae | Link to this comment | 07-30-20 7:18 AM
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4: you are both correct and anticipating the conclusion of the piece.

Posted by: NickS | Link to this comment | 07-30-20 7:22 AM
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I guess I can't get Vicodin for my castration anxiety because I never finished my dissertation.

Posted by: Moby Hick | Link to this comment | 07-30-20 7:24 AM
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Okay. Reading the second (correct) post, I see my point was indeed made, although a bit more narrowly since my point didn't involve technology, but the initial face to face bits. I guess I'm unsurprised that tech recapitulates the issues at earlier stages.

The Epic campus outside Madison is amazing. Heebie, if you get a chance to go, definitely do to see the carpets. I have some pictures but they don't do it justice. Each building is themed according to a non-copyrighted story like non-HarryPotter or non-Startrek. They have a huge auditorium in underground that fits thousands decorated with layers of the earth and a slide and a great cheap cafeteria and gyms and a tree house and no day care. Anyway, health dollars at work!

Posted by: hydrobatidae | Link to this comment | 07-30-20 7:50 AM
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I came to this post just after reading about the death of Herman Cain from COVID, likely contracted from going maskless at the Tulsa rally. NMM.

While Cain was politically vapid, I can't help but imagine his being Black in the medical system being related to his being, as far as I can think, the most prominent U.S. political figure to have actually died of COVID. (Nine congressmembers and one governor have been diagnosed to date, mostly Republicans. Some state legislators have died.)

Posted by: Minivet | Link to this comment | 07-30-20 7:57 AM
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I guess I did shared decision-making in my cancer treatment, but that was primarily by being contrary and determined as fuck. Also, my two doctors (high risk obstetrician and gyn-onc) were both decent guys. I had all the benefits (of understanding what the decisions are, of having friends I could consult, of stubbornness, of knowing my priorities). I think I came out of it as minimally mutilated as I could have been, so I guess that was worth it.

Posted by: Megan | Link to this comment | 07-30-20 8:51 AM
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4: So, I went to a talk where an Obama health official - maybe the director Of CMMI was talking about hypertension management, and his experience as a white male patient. I think the guy was a family doctor or a pediatrician. He brought in his blood pressure log and asked about meds, and they put him on a BP med that was expensive and kept wanting him to come back but would not accept his log of blood pressures as a substitute. He finally said something like, I heard HCTZ is pretty good, could I try that.

The thing was. He didn't volunteer what he did for a living, and she didn't ask. Privileged, cis white male and still. 2 or 3 extra unnecessary visits with a doctor who knew nothing about his social history.

Posted by: Bostoniangirl | Link to this comment | 07-30-20 10:43 AM
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ms bill had breast cancer as a young woman; I had a sarcoma about 5 years ago. Each time we managed a de facto "shared" decision-making process by talking to numerous specialists about options, getting referrals and second opinions, and then doubling back so that all eventually agreed on a course of treatment. It was exhausting each time, before any operation or treatment. She said once that she felt like a general contractor of cancer care. The breast cancer was pre-kids and the sarcoma was after they had grown and left the house - doing all of the appointments while taking care of little ones would be really hard.

Posted by: bill | Link to this comment | 07-30-20 11:07 AM
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Let's not forget that Epic was also the employer party on this Supreme Court case that eroded workers' rights.

Posted by: md 20/400 | Link to this comment | 07-30-20 7:43 PM
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