Held in hospital to avoid dying in the cold: Physicians say case of Toronto brain tumour patient shows gaps in end-of-life care

·6 min read

Inside North York General Hospital, a 56-year-old man dying of an untreatable brain tumour is being held against his wishes — as doctors fear the patient, who has nowhere else to go, would otherwise face homelessness, frostbite and malnourishment in the throes of winter.

He can’t be transferred to hospice, despite having just months to live, until he’s unable to leave on his own. He can’t go home: he was functioning at a “marginal level” in the years before the tumour was discovered in December, was kicked out of a shelter, moved in with his elderly mother, then risked her being evicted due to his erratic behaviour.

His doctors appealed last month to Ontario’s Consent and Capacity Board to keep him bound involuntarily to their psychiatric facility, though he has no known history of psychiatric diagnoses, and his behaviour is believed to be a result of his cancerous tumour.

“His family was unable or unwilling to care for him. He suffered cognitive impairment rendering him unable to care for himself. With nowhere safe to live he would be homeless, disoriented and confused in January weather,” the board wrote in its decision.

The North York case is an illustration of several issues colliding – a lack of available housing, and symptoms akin to mental illness – which medical experts say present barriers to accessing end-of-life care. Those with complex mental health needs often face hurdles to receiving adequate palliative care, they said, and homelessness compounds the problem.

“Our systems are pretty good at supporting (patients) in their last hours and days of life, when they’re bed-bound and not mobile,” said palliative care physician Naheed Dosani, who works with homeless patients. “But when people are more mobile and have the complications of their disease, mental illness or (are) using drugs, and they don’t have a home or family to support them, there really isn’t a safety net, and many people fall through the cracks this way.”

Data on barriers to access is sparse, Dosani said, but other data shows a need for palliative services in the homeless population, including life expectancies roughly 20 years lower on average for men and a higher prevalence of diseases like cancer.

In 2016, Health Quality Ontario found that dying patients in the province’s poorest neighbourhoods were less likely to receive home visits from doctors, and more likely to be admitted to hospital in their final 30 days.

Eyitayo Dada, the North York patient’s lawyer, declined to discuss the case specifically due to an inability to get her client’s consent. But she noted that she often saw concerns about patients with mental health issues “falling through the gap” becoming an issue in discharge planning.

The hospital also declined to speak about the patient’s specific case. But its head of palliative care, Sandy Buchman, said he believes the health-care system overall lacks options for terminal patients with more than a few weeks to live. Layering on mental health concerns and a lack of stable housing only further exposed the system’s weaknesses, he said,

“Patients like that are really stuck. We need to do better to take care of them.”

At the hearing last month, North York General physician Jay Nathanson said that while the cause of the patient’s delirium was physical, it was classified as a mental disorder. He described the man’s confusion, “profound memory loss,” agitation, anger and lack of insight. His symptoms were only expected to worsen, as the cancer continued to spread through his brain.

“Dr. Nathanson’s concern was that, in his current impaired state, (the patient) was utterly unable to care for himself and stay safe,” the board wrote. The patient’s son told the board his father was evicted from a shelter he was staying at, then put his grandmother’s housing in jeopardy. If he walked out, Nathanson said the man would surely be “lost to medical care.”

Hospice was the “logical” end of the road for him, Nathanson said, but that could only happen once the man was unable to leave, or uninterested in doing so. “In his current state of agitated, angry exit-seeking he could not be placed in a hospice setting but had to remain as an involuntary patient in a psychiatric facility for his own safety,” the board wrote.

“Discharge to hospice care was only a future prospect.”

Harleen Toor, a palliative care physician at Sinai Health, said research shows patients with severe mental illness don’t get equitable access to health care in general, due to stigma that she said persists among healthcare providers who don't have psychiatric training. This inequity, she said, extends to palliative care.

“It’s an enormous issue, and it’s only been really in the past five years that the areas of psychiatry and palliative care are really highlighting how we’re both doing a pretty poor job of managing and addressing these patients,” Toor said.

Many people who stay in Toronto’s shelter system grapple with mental illness, with 32 per cent of the city’s homeless population self-reporting mental health issues in a 2018 survey. People who are homeless also often don’t have primary health-care providers who could sooner detect serious, life-threatening illnesses like the North York patient is facing, Toor said.

“This patient’s care needs were not addressed until it reached a critical phase, where the safety of both himself and potentially his mother was in question, and so there was no recourse except to keep him in hospital,” Toor said, when examining the board ruling on his case.

Many patients prefer to spend the end of their life in their own communities, and ideally should be able to with 24/7 access to a palliative care expert, nurses and personal support workers, Toor said. But by the time some patients with complex behavioural needs get a diagnosis, there isn’t time to arrange those supports.

To Trevor Morey, a palliative care physician who specializes in caring for Toronto’s homeless, lack of affordable housing is a key barrier for vulnerable populations looking to access appropriate end-of-life care. Though Toronto gives priority on its social housing waitlist to households where someone has less than two years to live, with 315 households in the queue as of Feb. 21, Morey said those with shorter prognoses might die while waiting for a spot.

Last year, 133 households in Toronto were given housing spots from that priority line.

Housing not only allowed for stable end-of-life care, Morey said, but could be a preventative measure for people with complex health-care needs — offering them enough stability to access consistent medical care, to prevent manageable illnesses from becoming life-threatening.

“If we can’t provide housing and meaningful supports for the people who are dying in our community, what does that say about us as a city?” he said.

Victoria Gibson and Nadine Yousif, Local Journalism Initiative Reporters, Toronto Star