Doctor: disability patients left to die

Some GPs and specialists are moving people with intellectual disabilities into palliative care without treatment options.

Some GPs and specialists are moving people with intellectual disabilities into palliative care too quickly, without giving them the same treatment options as those without a disability, a palliative care expert has told the disability royal commission.

The medical specialist, who requested anonymity and is known at the commission as Dr J, listed multiple examples where a person with an intellectual disability­ had not been provided with appropriate levels of healthcare by a GP, a hospital or a specialist, which affected their quality of life and prognosis.

“On several occasions in the case of people with intellectual disabilities … they’re referred to me before they’ve been offered any treatment for their … cancer,” Dr J said. “There are times that they should have been treated, and I’ve come across times when they haven’t been, and this has been very concerning to me.”

Dr J said GPs were too ­pushed for time to cater for the particular needs of patients with an intellectual disability and spec­ialists were often too quick to consider a patient inapprop­riate for treatment other than pallia­tion.

She cited numerous examples, including one case of a 37-year-old man with an intellect­ual disability who had a job and was otherwise content with his life but was diagnosed with a rare skin tumour. A haematologist decided not to offer him any treatment, despite some gentler forms of chemotherapy offering the possibility of controlling its spread.

Dr J said she navigated a second­ opinion for the man, who then entered into a course of treatment, and since the original diagnosis a new immunotherapy drug had become available that he was now responding well to.

“He’s like a new man … not just alive, a lot better. And I cannot­ prove it but I really feel that the first decision (for no treatment) was made on the basis of him having an intellectual disability.”

Dr J suggested the education of doctors and nurses needs to be overhauled with regard to training in intellectual disability, and to better understand that quality of life is a subjective concept, so that patients with disabilities can lead active and contented lives.

And she criticised hospitals for failing to understand the ­particular needs of people with a disability in such a setting.

“I don’t feel hospitals are safe for people with intellectual disabilities, especially when they are non-verbal,’’ Dr J said. “I once went into a local hospita­l and there was a man screaming loudly, and there must have been at least a hundred people around and no one questioned it.

“And I said, ‘What’s wrong with him?’, and they said, ‘Oh, that’s the man with a disability.’ And I said, ‘But there’s got to be something wrong, that’s a cry for help’ … no one did anything …

“Patients with an intellectual­ disability face a profound struggle with the healthcare system from the moment they are born to the moment they die.”