Ignorance masquerades as care

TheStar.com – Disabilities – Ignorance masquerades as care
April 19, 2008. Helen Henderson

Bobby Sarlina was about to leave for work, sipping hot chocolate, hurrying because she was running a little late. She is a social services case manager but she never made it to the office that day last November.

A drop of hot chocolate found its way into her lungs and, the next thing she knew, she was at Scarborough General Hospital.

Because she has muscular dystrophy and her throat muscles are getting weaker, Sarlina is hyper-vigilant when swallowing. Aspirating anything could lead to fatal choking or pneumonia.

In this instance, she was lucky. Her breathing returned to normal.

“I was fine,” she says. But doctors wanted to monitor her, so she was admitted to hospital – which is when a whole new set of problems began.

Like many people with disabilities, Sarlina, who uses a wheelchair, does not feel safe in hospital because she says health-care workers aren’t educated about how to approach anyone who moves or communicates or processes information outside the boundaries of the majority.

“Hospitals are basically killing or nearly killing us with neglect and ignorance,” says Sandra Carpenter, acting executive director of the Centre for Independent Living in Toronto. The centre has been collecting stories from its members, aiming to use first-hand accounts as a lever for better education, communication and accountability throughout the system.

In Sarlina’s case, one of the key issues was food. “They wanted to put in a feeding tube,” she says. When she protested, emphasizing she wanted to continue eating on her own, she says staff told her they would not give her food orally because she might repeat the hot chocolate incident.

“They assume that if you can’t move or perform your own personal care, you’re not capable of making informed decisions,” Sarlina says. “I’ve learned to cope with and control my condition….They showed no respect for my wishes.”

After a six-day standoff, during which she says she was given no food, Sarlina checked herself out of the hospital.

Sarlina is in the process of filing a formal complaint with the Ontario Human Rights Commission and the College of Physicians and Surgeons. But, ultimately, she says, all she wants is to highlight the need for more education about physical and intellectual disabilities in hospitals across the country. In this mission, she may have some allies in the medical community.

A study in the latest edition of Canadian Family Physician says medical students want more training to help them treat people with intellectual disabilities.

Researchers at Queen’s University and the University of Toronto surveyed 196 medical students. Among findings:

• 88 per cent believe their future practice is likely to include patients with intellectual disabilities.

• 93 per cent feel training in intellectual disabilities should be improved.

• 91 per cent feel training in intellectual disabilities is good preparation for work with other patients, including children, those with brain injuries or dementia, and those who do not speak the same language as the doctor.

The results echo findings from international studies, says lead researcher Philip Burge, assistant professor of psychiatry at Queen’s. So Canada is by no means alone in its neglect.

But Burge hopes the Canadian study, funded with a grant from the developmental disability program at Queen’s, will lead to improved care by underscoring the need for better communication skills and the ability to make patients feel comfortable.

“As Ontario closes its remaining institutions for people with intellectual disabilities and the reliance on physicians in the community increases, it is even more urgent that our future physicians receive enhanced training,” he says.

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