Death or dialysis? Gaspé kidney patients face tough choices

Given the choice between dying or travelling 800 kilometres three times a week for dialysis treatment, 85-year-old Yvette Lamarre would choose death.

Lamarre lives in Gaspé, which — like many rural areas in Quebec — is poorly served by specialist medical services. There are only 12 spots in a dialysis treatment centre in Chandler, 100 kilometres down the coast, but they're all taken.

That's the only health centre that offers hemodialysis on the Gaspé Peninsula, an area roughly the size of Belgium.  

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For Lamarre to get treatment for her failing kidney, her next closest option is Rimouski, nearly 400 kilometres away. The nine-hour round trip isn't something she is willing to consider.  

"I won't have the choice. What do you want?," Lamarre said. "It's up to the government to take care of us."

Lamarre has been receiving peritoneal dialysis at home for the past 10 years.

Last September, ​her doctors told her that treatment was no longer working; she would have to switch to hemodialysis, in which blood is pumped out of the body to an artificial kidney machine to be filtered and cleaned before being pumped back.

Each hemodialysis session can last four hours and must be done three times a week. 

While hemodialysis can be done at home, patients must first undergo a nine-week-long training session in Quebec City. For Lamarre, that's too far to go, for too long. 

And moving to Rimouski? 

"My family is all here. My daughter lives with me to help me. My husband helps me a lot," Lamarre said. "I'm comfortable at home, so I don't want to leave here." 

'I don't have a choice'

Lamarre is not the first resident of the Gaspé Peninsula forced to travel vast distances for hemodialysis treatment, nor is she the first to suggest all that travelling challenges a patient's will to live.

Facing a four-hour round trip between Sainte-Anne-des-Monts and the hemodialysis centre in Rimouski, Cyrille Gibeault warned last August that he would simply stop seeking treatment unless a better arrangement was found.

His son, Cyrille Junior Gibeault, who also suffers from kidney failure and requires dialysis three times a week, threatened to join his father in the protest.

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"I don't have a choice," Junior Gibeault told Radio-Canada. "My father is going to die, and for what? For inaction."

Local health officials eventually agreed to send Gibeault, 63, to Quebec City to receive the training necessary to perform the hemodialysis at home. 

Gibeault, with the help of his local MNA, the Parti Québécois's Gaétan Lelièvre, tabled a petition last month in the National Assembly with more than 2,000 signatures, calling for better access to hemodialysis in the Gaspé region.

A similar petition, this one with 8,500 signatures, was tabled in 2015

'Capacity is capacity'

Health Minister Gaétan Barrette recognizes that the situation in the Gaspé is far from ideal and indicated the government is looking at a number of solutions, including dispatching a mobile dialysis unit to the area.   

In the meantime, he said, Lamarre and others will simply have to wait their turn for dialysis treatment closer to home. 

"We're trying to make arrangements," Barrette told CBC's Breakway. "Dialysis is a service. You cannot bump someone. Capacity is capacity. You cannot take the place of someone else."

Pressure on the region's already limited dialysis resources is only likely to grow in the years to come, warned Martin Munger, executive director of the Quebec branch of the Kidney Foundation of Canada.

Referring to Lamarre's case, he said, "With people getting older and older we will see this kind of very difficult situation more frequently."

The province's own guidelines recommend that kidney patients not have to face round-trip travel of more than three hours to undergo dialysis. 

But setting up additional treatment centres is expensive. Munger estimated that treating one dialysis patient costs more than $60,000 per year.  

"It takes a machine, it takes a room, but more importantly, it takes nurses and different health professionals to operate a dialysis centre," he said.

The ideal solution is to expand the availability of home dialysis, he said.

But at the moment, it is believed Gibeault is the only person in the Gaspé region trained to administer the treatment to himself.