A medical student and twin sister of a man with profound autism argues future doctors need to learn about working with patients with intellectual disabilities.

Oliver McGowan was 18 years old when he was hospitalized in England with recurrent seizures and pneumonia. He was autistic, and he and his parents had one specific request for the medical team: no antipsychotic medications. When he had taken them in the past, they made his seizures worse and had devastating effects on his mood. Despite the family’s vehement protests, doctors gave him an antipsychotic. A few days later, Oliver suffered a lethal neurological side effect. A week later, he was taken off life support. An inquest into his death found that the drug had led to the rapid deterioration.

After his death in 2016, his mother, Paula, launched a campaign to mandate training on intellectual disability and autism for health care workers. In 2022, the U.K. National Health Service listened. Now, all health care workers in the NHS must complete both an online module and a live interactive session covering communication and accommodations needed for this population. The U.S. needs to follow suit, starting with medical schools.

  • loopy@lemm.eeEnglish
    30·
    11 months ago

    I’m not sure about “not teaching” but probably not adequately teaching the importance of patient-centered care. I know it’s sort of a buzz word, but I can see in a couple of my nursing classes that it really is a different perspective. Taking people seriously about their goals and preferences for care instead of the semi-authoritarian style of “I’m the medical professional, so this is probably best.” Sure, some people wouldn’t make the same medical decision that you would as a professional, but people should get to decide that for their own lives. Sometimes it’s a lack of knowledge but in my experience, health care workers do not consider the patient’s words as much as they should.

    • Fermion@feddit.nlEnglish
      10·
      11 months ago

      My sister is extra sensitive to anesthesia. A health professional ignoring her or our families input during an emergency could definitely kill her.

      Trusting that doctors won’t override concerns is a major source of worry in an already stressful time for people who have atypical responses.

      One strategy that can work is to find a primary care doctor that takes emergency calls out of hours. Asking emergency care providers to call a primary care physician for details on special considerations seems to be taken much more seriously than a request just expressed by family.

      • Spuddlesv2@lemmy.caEnglish
        7·
        11 months ago

        My wife is the exact opposite - she needs considerably more anaesthesia than most people. Every time she’s gone in for an operation the doctors have ignored her pleas and every time they are shocked when they realise she’s not properly anaesthetised. I have found most doctors don’t listen to their patients, especially women, let alone the family.

    • Nawor3565@lemmy.blahaj.zoneEnglish
      6·
      11 months ago

      Exactly. Patients and their doctors should work together as much as possible, because ultimately it’s the patient’s body and they should get to decide what they want to do. A doctor should be able to answer questions, give recommendations, and discuss treatments, not just say “here’s what I say, and I went to medical school so clearly I know what’s best in 100% of situations.”

      Not trying to say that doctors aren’t the medical professionals or that their opinions shouldnt be taken seriously. But they’re human, just like everyone else, not omniscient beings who never make mistakes or misinterpretations.

      • DessertStorms@kbin.social
        6·
        11 months ago

        Knowing how to treat autistic people isn’t being fucking omniscient, it’s bare fucking minimum knowledge a medical professional should have, jfc… 🤦‍♀️🤦‍♀️🤦‍♀️

    • Poxy15@lemmy.worldEnglish
      5·
      11 months ago

      I work in medicine. Seeing how doctors treat patients is eye-opening. On one hand really good doctors listen to what their patients say and try to find the best solution that the patients would like (after all, if they didn’t like it they wouldn’t follow through, which is even more dangerous sometimes!). Bad ones just prescribe a medicine and move on.

      I think the reason this is becoming more and more common is because people keep pushing doctors to be more and more “efficient” per patient (spending the least amount of time per patient for profit). If we didn’t have that, these events would be more rare.

    • DessertStorms@kbin.social
      4·
      11 months ago

      I am sure about not teaching.
      95% of medical staff I have encountered have absolutely no idea how autism might impact not only communication, but a patient’s needs too.
      Ableism, like sexism and racism are deeply ingrained in to the medical fields, and it’s so fucking frustrating that people, especially those who have no experience of this themselves, brush these kinds of complaints off, or try to minimise them, because “surely not”…
      Maybe just listen?

      • calypsopub@lemmy.worldEnglish
        3·
        11 months ago

        Most of them have no clue about the physical problems autistics often face, such as autonomic dysregulation. Mine include IBS and tachycardia.