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.
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.
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.