White Coat, Black Art

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

Tristan Lederman, 34, spent his final months in pain and distress before he died. His parents say he got inadequate palliative care from his doctors. His case doesn't surprise advocates who say it illustrates some of the failures in both the health-care and education systems.

Toronto parents say adult son with cerebral palsy received inadequate at-home palliative care

Tristan Lederman, centre, is surrounded by his sister and parents, Mark and Jenn Lederman. (Submitted by Lederman family)
Listen to the full episode26:29

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."

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

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.

'You have to prepare yourself'

It was Jenn's sister, a doctor, who first speculated that Tristan may be at an end-of-life stage, although she was not treating her nephew. 

"She said, 'I hate to tell you. Tristan is dying ... This is the way a lot of disabled kids go. The system starts breaking down. I think you have to prepare yourself. I think he's dying,' and she told us that early in 2017," Jenn recalled.

But the Ledermans say they and Tristan's family doctor and palliative care physicians didn't see eye-to-eye on his care, particularly when it came to pain management.

"We put to them questions: 'Is Tristan possibly in a dying stage?' The doctors would not answer that question," Mark said. "We said, 'Our goal is to maximize the pain killing. Will you accede to the substitute decision makers' wishes — that's Jennifer and I — to say that we want more for Tristan to ease his pain?' Unfortunately, the doctors would not answer that question, either."

We put to them questions: 'Is Tristan possibly in a dying stage?' The doctors would not answer that question.- Mark Lederman , Tristan's father

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.

Nelson Raposo, 40, who has cerebral palsy, said when the time comes he wants to die at home where he lives with his parents. (Submitted by Nelson Raposo)

Nelson Raposo, 40, a member of Community Living Toronto's board of directors, said Tristan's case underscores gaps in the health-care system for disabled Canadians facing the end of life.

Raposo has cerebral palsy and said when the time comes, he wants to die at home where he lives with his parents.

"More and more people like us are living longer, and more and more people like us want to be at home. They should be more educated for people like us, and they're not."

Tristan's case 'very symbolic'

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.

Dr. Kyle Sue, a B.C. physician who works in both adult and pediatric palliative care, said Tristan's case is 'more common than any of us would like.' (Submitted by Kyle Sue)

"There needs to be more awareness, more education and more exposure in order for them to fully understand the breadth of the difficulties that these patients have and how best to support them," he said.

'A lack of expertise in the community'

Dr. Adam Rapoport, medical director for Emily's House in Toronto — one of the few hospices across Canada for children with exceptional needs — said it's a challenge.

"There is a lack of expertise in the community and among adult clinicians when it comes to looking after the complex needs of adults like Tristan," he said.

The bulk of patients at Emily's House have chronic complex neurological problems, such as intellectual disabilities and  developmental disabilities, similar to Tristan. But it provides care for children with complex needs, not adults like Tristan.

Both Rapoport and Sue said palliative care teams should talk to the families and spend time to understand their concerns and how best to help them and the patient.

Sue added that if palliative care doctors are unable to manage an adult patient's problem, they should consult pediatric palliative care physicians, as well as colleagues across the country.

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

'There is a lack of expertise in the community and among adult clinicians when it comes to looking after the complex needs of adults like Tristan,' said Dr. Adam Rapoport. (Dodge Baena/SickKids)

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.

"We think something positive could have come out of that bad experience. And that's all we're trying to do is get that dialogue going and try to get definitive about what can be done, when it can be done, how it could be done," Mark said.

Written by Showwei Chu. Produced by Sujata Berry.

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