Dan's Law seeks to fill gap in access to palliative care in Ontario

When Dan Duma returned home for his final days, the publicly funded healthcare he grew up with was suddenly gone, and all he did was leave Ontario.

Bill named for Dan Duma, Windsor man who faced delays in publicly-funded care before he died

Dan Duma is the namesake for 'Dan's Law' which is a bill in the Ontario Legislature designed to increase access for publicly-funded palliative care for Ontario residents who move out of province who want to come home at the end of their lives. (Anna-Cornelia Duma/Provided )

When Dan Duma returned home for his final days, the publicly funded healthcare he grew up with was suddenly gone, and all he did was leave Ontario.

He was one of an increasing number of patients falling into a gap in Ontario's healthcare system.

A new bill from Windsor West MPP Lisa Gretzky is aimed at changing that. Called Dan's Law, it would remove the three-month waiting period for access to OHIP funded home and palliative care, for Canadian residents who move or return to Ontario.

Under inter-provincial billing agreements, if someone comes to Ontario from out-of-province, they have to wait three months before being eligible for OHIP.  In that time, the other province is responsible for covering "medically necessary" visits.

Access to physician and hospital services are covered. But the gap lies when patients need home care and do not have access to palliative care.

For Dr. Darren Cargill, this is an "awkward limbo." He provided hospice care to Duma, who suffered from terminal liver cancer.

"When someone has a very limited amount of time to live, asking them to wait three months to qualify for proper end-of-life care just seems a little bit backward to me," Cargill said.

Dan Duma was unable to access publicly-funded palliative care in Ontario because he was living in Fort McMurray. (Ana-Cornelia Duma/Provided )

As the palliative-care leader for the Erie St. Clair Regional Cancer Program,Cargill said he's had to get creative to provide end-of-life services to several dying patients coming from out of Ontario to be with their families in their final moments.

"They are shocked to find out that there is this gap in their health care," he said. "I tell them and their families this is not the way it's supposed to be."

'It was very scary'

But Duma's case was rare.

He and his wife Ana-Cornelia moved to Fort McMurray from Windsor three years ago for his new job. Tragedy struck when he was diagnosed with liver cancer last April.

In May, Duma became short of breath and started retaining fluid. He was hospitalized just as the fires in Fort McMurray broke out.

"It was very scary because he was sending us pictures of fires outside of his hospital room. The timing was horrible," said Laura Duma, Dan's daughter, who is a nurse practitioner in Windsor.

Laura Duma helped her dad Dan Duma come home to Windsor, Ont. to be with his family before he died. Under inter-provincial rules, he was not able to get access to publicly-funded palliative care in Ontario because he was living in Fort McMurray. (Jonathan Pinto/CBC)

He was eventually evacuated by plane and sent to a hospital in Edmonton, where he was told he was going to die. 

"Their doctor said 'it's not looking too good, you only have a short period of time, I would advise that you go and spend some time with your family,'" Laura Duma said.

Duma and his wife decided to come back to Windsor to be with their children, but his wish to die at home was complicated by Ontario's three-month waiting period for palliative care coverage. 

"My dad vocalized numerous times that he wanted to pass away at home with us, and we couldn't make that happen for him because he didn't have any coverage in the province," said Laura Duma.

Normally within the three-month period, patients like Duma would not qualify for any services from their Community Care Access Center (CCAC). That meant nursing services and personal support workers would not be available. Duma did have coverage for drugs through insurance from his job.

Laura, 29,  and her younger sister Andreea, 27, who is a registered nurse, approached Dr. Cargill to provide hospice care to their father.

Cargill admits the care he and his team provided to Duma was disjointed.

Dr. Darren Cargill, says he sees patients struggle to get access to publicly-funded palliative care. (Jonathan Pinto/CBC)

"It was incredibly frustrating because every time we tried to do something for this gentleman it was like reinventing the wheel," he said. "All the tools and supplies necessary to support a patient who wants to be cared for at home just simply aren't there. So a large amount of the stress and duress falls upon the family."

When Duma was in his final days, Cargill found a way to get him into a residential hospice.

"We had to get very creative with how we took care of this gentleman. We brought him in, we bit the bullet and paid out of some emergency funds we had to take care of him," said Dr.Cargill.

"We were able to do that for his final days of life, but what about the two months beforehand at home where he wanted to be?" he asked.

Duma is not the only one to fall through this crack. Cargill treated four other patients in similar situations this year alone.

Duma died on July 18, one month into the three-month waiting period.

"He just wanted to be at home with his family in peace," Laura Duma said. "I wish we could have done that for him."