In the end, all Dan Duma wanted was to die at home.
He was denied that simple request – some would call it a basic right – because of a pointless bureaucratic rule.
And now, to add insult to injury, attempts to fix that rule may fall short because of mindless foot-dragging.
Surely, Ontario politicians can do better.
Here’s the background: Mr. Duma worked for many years at the General Motors transmission plant in Windsor, Ont. When it closed down, in July, 2010, he headed west and found work at Suncor in Fort McMurray.
Mr. Duma was diagnosed with cirrhosis of the liver and then liver cancer, both caused by infection from the hepatitis B virus.
Between October, 2015, when he had part of his liver removed, and May, 2016, Mr. Duma spent a lot of time in a Fort McMurray hospital. In May, 2016, during the massive Alberta wildfires, he was airlifted to a hospital in Edmonton.
Too sick to return to Fort McMurray, Mr. Duma and his spouse decided to move back home to Windsor, where their two daughters live.
It was clear that, with untreatable liver cancer, he was going home to die.
But, to his surprise, Ontario said he was not eligible for home care and palliative care.
Because, while we like to believe a Canadian is a Canadian, that is not strictly true when it comes to health care, especially when you move between provinces.
One of the principles of the Canada Health Act is portability – meaning that you are covered by your province’s public insurance plan even if you leave the province. The provinces have a reciprocal billing agreement under which they agree to cover those costs.
But there is a catch: That rule only applies to “medically necessary” services, meaning hospital and physician care.
For other publicly insured services, such as prescription drugs, home care and palliative care, there is a three-month waiting period for coverage.
Mr. Duma came home to Windsor in May, 2016. He died on July 18, 2016, at the age of 48.
As Dr. Darren Cargill, Mr. Duma’s palliative care physician, said: “Dan Duma died while dutifully doing three months penance waiting for OHIP.”
There is no medical or financial justification for an arbitrary waiting period. If anything, hospital care is far more costly than the alternative.
And there is certainly no moral justification for telling a dying patient to wait three months for palliative and hospice care.
Mr. Duma was lucky in a sense. Both his daughters are nurses. They cared for him at home, scrounging equipment and supplies. Dr. Cargill, outraged by the situation, finagled a bed at a local hospice so Mr. Duma could spend his last few days with a modicum of dignity.
But he never did get to die at home.
In October, 2016, Lisa Gretzky, the New Democrat MPP for Windsor West, moved by the story, introduced a private member’s bill in to correct the situation. Bill 54, Home Care and Community Services Amendment Act (Dan’s Law), would simply lift the waiting period for coverage of home care and palliative care.
It passed first and second reading quickly, with support from all parties, and then it was referred to the justice policy committee in November, 2016. Then, for 16 long months, nothing.
Committee should not be a place where ideas, especially good ideas, go to die. But with an Ontario election coming in June, the bill risks dying on the order paper.
That would only compound an already tragic story by virtually ensuring that others will suffer the same cruel fate as Mr. Duma.
This situation is not unique to Ontario. Beyond the legislation, what is really needed is for all provinces and territories to modify the reciprocal billing agreement to cover home care and palliative care.
The reason people move between provinces at end-of-life is not to rip off the system, it’s to be close to family – family members who will be providing care and support that they cannot provide from afar.
The medicare system should be facilitating, not impeding, these moves.
As Dame Cicely Saunders, the founder of the hospice movement and the grande dame of end-of-life care, said: “The way we care for people at end of life reflects our values and compassion as a society.”