Liver cancer patient Dan Duma in hospital in Fort McMurray, Alta.Handout
When Dan Duma found out he had incurable liver cancer, he wanted to die at home.
For the Alberta oil-sands worker, that meant moving back to Windsor, Ont., where he and his wife lived for more than 15 years before the closing of the local General Motors plant pushed them west, and where their two grown daughters live now.
Unfortunately for Mr. Duma, crossing provincial lines left him with no access to publicly funded home care for three months, making it impossible for the 48-year-old to be at home when he died on July 18.
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"He made it abundantly clear, over and over again, that he wanted to die at home," said Mr. Duma's daughter, Laura. "But it wasn't an option."
Mr. Duma fell through one of the biggest cracks in Canada's fractured home-care system – a crack that has still not been repaired, despite all the attention political leaders have showered on the issue recently. The problem is that home care is not covered in the first two to three months after a patient moves to a new province.
The federal, provincial and territorial health ministers made home care a priority at their meeting in Toronto last week, and the Liberal government has singled it out as the only area of health care in line to receive new money from Ottawa.
Yet Mr. Duma's case illustrates how the reality of at-home medical care in Canada has not caught up to the rapturous political rhetoric about its potential, said Nadine Henningsen, executive director of the Canadian Home Care Association.
"Even though a lot of provinces are talking the talk," Ms. Henningsen said, "at the front line, we're not feeling it."
This week, an NDP MPP is planning to table a private member's bill in Mr. Duma's memory that could close the temporary home-care gap in Ontario, but even she acknowledged that all provincial governments would have to band together to solve the problem across the country.
Under an interprovincial agreement that applies nationwide, Alberta paid for Mr. Duma's hospital and physicians' bills while he waited for his Ontario Health Insurance Plan coverage to kick in.
But that reciprocal billing deal covers only "medically necessary" services guaranteed by the Canada Health Act. Home-care services do not count, even for patients such as Mr. Duma, who had less than three months to live.
Mr. Duma, a maintenance planner for Suncor, had active hepatitis B and liver cirrhosis before a liver cancer diagnosis led surgeons to remove 60 per cent of the organ in October of 2015.
In May, he was back in hospital in Fort McMurray when the wildfires swept through, forcing him to travel with hundreds of other patients to Edmonton.
Terminally ill and unable to return with his wife, Ana, to their Fort McMurray home, Mr. Duma decided to move back to Windsor to be with Laura, 29, a nurse practitioner, and his younger daughter, Andreea, 27, a registered nurse.
"He spent the majority of the last year of his life in a hospital," Laura said. "It was the last place he wanted to die."
But Mr. Duma's family quickly discovered how hard it would be to fulfill his final wish.
He did not qualify for any services provided by his local Community Care Access Centre (CCAC), the public agency that co-ordinates home care in Ontario. That meant no nursing care, no help from personal support workers and no access to publicly funded equipment, such as a hospital bed.
Darren Cargill, the palliative-care leader for the Erie St. Clair Regional Cancer Program, found out about Mr. Duma's dilemma from his daughters. He did his best to help, asking nurse educators from the Hospice of Windsor and Essex County to support the family by phone, and rummaging through the hospice's basement to find used equipment to donate to Mr. Duma.
In the end, Dr. Cargill bent the rules to secure a bed for Mr. Duma at a hospice in Leamington, about 45 minutes from Windsor. Hospice services are also excluded from the interprovincial billing agreement.
"It's a little bit tragic," Dr. Cargill said. "In the eyes of the Ministry [of Health and Long-Term Care,] he wasn't even in that bed. We never admitted him. We kind of snuck him in on a weekend, took care of him, and gave him a peaceful death."
Mr. Duma was not the first dying patient Dr. Cargill has treated who did not qualify for home care because of a recent move. The doctor had already raised the issue with Lisa Gretzky, the NDP MPP for Windsor West, who wrote a letter to Health Minister Eric Hoskins about the problem last January, six months before Mr. Duma died.
On Tuesday, Ms. Gretzky intends to introduce a private member's bill called Dan's Law that would amend the Home Care and Community Services Act to waive the three-month waiting period for home care for patients who move to Ontario from another province where they qualified for public health insurance.
Opposition private member's bills rarely become law. In an e-mailed statement, Dr. Hoskins said he and Premier Kathleen Wynne have "indicated that this is an issue of concern for our government," but that Ontario on its own cannot close the temporary gap in home-care coverage.
He said the provincial and territorial health ministers have formed a working group to "modernize and expand" their reciprocal billing agreements.
But Ms. Gretzky said that "we can't wait for them [health ministers] to actually sit down, have this conversation, and really get this done."
Kelly Grant