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Family fighting for better end-of-life care for people with severe disabilities after son’s painful death

Saturday, December 8th, 2018

Tristan Lederman, centre, is surrounded by his sister and parents, Mark and Jenn Lederman. (Submitted by Lederman family.)

Tristan Lederman was born hydrocephalic and had cerebral palsy. He could not see, walk or do anything for himself, relying on his parents and at-home caregivers for all his needs.

But like a lot of other young adults with extraordinary medical needs, his health took a turn last year. He developed rashes and suffered seizures. He wasn’t eating and drinking. He slept more during the day and went to bed early in the evenings.

“We knew something was seriously wrong with him,” his father Mark Lederman told White Coat, Black Art host Dr. Brian Goldman.

Tristan’s mother said she’d repeatedly tell the family doctor her son was constantly moaning and in pain.

“I think Tristan was trying to tell us that he was on his way out,” said Jenn Lederman. “Tristan never cried but he … sometimes just burst into tears. I think he was very aware that he was going.”

The Ledermans say they believed their 34-year-old son was dying, but the doctors wouldn’t provide a diagnosis or prognosis. They say the doctors provided inadequate at-home palliative care to manage their son’s pain right until his death on Oct. 8, 2017.

Click here to read the story originally published by CBC Radio.

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