Toronto Family Fights for Better End-of-life Care for People with Severe Disabilities

An interesting article about Tristan Lederman, a man born hydrocephalic who 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.

However, 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.

Tristan\’s mother said she\’d repeatedly tell the family doctor her son was constantly moaning and in pain. His mother noted that, \”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.

Tristan\’s case doesn\’t surprise advocates and experts who say his case illustrates some of the failures in both the health-care and education systems, which haven\’t prepared doctors, nurses and health-care professionals to care for severely disabled patients at the end of their lives.

By the time the family doctor agreed in late August 2017 that Tristan was dying, he brought in doctors who specialize in at-home palliative care. Their additional efforts to manage the pain, however, also failed, until a pain pump, which could have controlled his pain more closely, arrived shortly before his death.

Kyle Sue, a B.C. physician who works in both adult and pediatric palliative care, said Tristan\’s case is \”very symbolic and actually more common than any of us would like.\”

In the past, patients with severe developmental disabilities did not live to middle age, and were often institutionalized. Now that health care has improved, many like Tristan are living longer than ever before in their own communities. But doctors don\’t tend to see these patients in their practice and only some schools have adapted their core curriculums to include end-of-life care for patients with disabilities.

Canada is lagging behind other Western countries when it comes to palliative care for adults with severe disabilities, Sue said.

The United Kingdom has teams that are specifically trained in palliative care for adults with developmental disabilities. And they have outreach programs that spread to more rural places.

In May, the Ledermans filed a complaint with Ontario\’s College of Physicians and Surgeons — part of which deals with Tristan\’s doctors. The physicians have filed responses, but a decision by the college isn\’t expected for months.

The Ledermans are also lobbying the premier and health minister in an effort to improve palliative care at home for people with exceptional medical needs.

This is an interesting case to watch so we can see if there is any change in Ontario and if that will filter out to other parts of Canada, including here in B.C.