As dialysis demand rises, many Sask. residents with kidney failure spend hours travelling for treatment

There were 953 dialysis patients in Saskatchewan as of Dec. 31, 2018. More than half — 57 per cent — had their point of care in the north.

Andrea Hill, Saskatoon StarPhoenix 11 minute read January 7, 2020

PRINCE ALBERT — Napoleon and Monique Bouvier have spent much of the last two years on the road.

Every Wednesday and Saturday, the couple wakes at 5 a.m. and starts driving south by 6:30.

The journey from the Bouviers’ home in Ile à la Crosse to the hospital in Prince Albert takes four hours on a good day if they don’t stop. It takes longer if the weather is bad.

Once they arrive at Victoria Hospital, Napoleon is hooked up to a hemodialysis machine that acts as an external kidney, filtering his blood.

He dozes in the reclined chair for four hours, blood coursing in and out of his body through the tubes sticking out of his arm. After the procedure he feels drained. He and Monique begin their four-hour drive in reverse, usually chauffeured by one of their sons.

The Bouviers’ life has revolved around Napoleon’s hemodialysis since October 2017, when he was rushed to hospital in Saskatoon with kidney failure that came about suddenly because of complications with his diabetes.

Napoleon Bouvier, 81, makes an eight-hour round trip from Ile a la Crosse to Prince Albert twice a week for hemodialysis with his wife, Monique Bouvier. They’re pictured in the dialysis unit at Victoria Hospital in Prince Albert on Wednesday, April 3, 2019. Liam Richards / Saskatoon StarPhoenix

When Napoleon’s kidneys went, he couldn’t breathe on his own and his skin turned grey. Monique was sure he would die.

Doctors hooked him up to a hemodialysis machine at Saskatoon’s St. Paul’s Hospital for three days. His breathing grew stronger and the colour slowly returned to his face.

“Our prayers were answered,” Monique recalls.

She told doctors she wanted to donate a kidney to her husband, but they said Napoleon, who was in his late 70s at the time, was too old to be a candidate for a transplant.

Napoleon, now 81, would need to receive dialysis for the rest of his life.

Home-based treatments underused

People need dialysis when they develop end-stage kidney failure and can no longer filter toxins out of their blood on their own.

There are two types: hemodialysis and peritoneal dialysis.

Hemodialysis involves large machines that filter patients’ blood. This can be done in patients’ homes if they have a home hemodialysis machine installed, or in a hospital with a dialysis unit.

For peritoneal dialysis, a tube is surgically inserted into a person’s abdomen and repeatedly used to fill the abdomen with a cleaning solution, then drain it.

Home hemodialysis and peritoneal dialysis allow patients to purge toxins from their bodies in the comfort of their own homes, but few dialysis patients use these options.

Twenty-nine of the 953 dialysis patients in the province as of Dec. 31, 2018 had home hemodialysis beds and 205 used peritoneal dialysis. The majority of hemodialysis patients — 75 per cent — used hemodialysis machines in hospitals or satellite clinics.

Dr. Joanne Kappel, a clinical nephrologist with the Saskatchewan Health Authority, says one of the biggest barriers to home-based treatment is fear; people worry that something will go wrong and they could become very sick or die without medical professionals nearby.

“We have to address that fear because home-based therapies have a better quality of life than institutionalized hemodialysis,” Kappel said. “The morbidity and mortality are about the same and — perhaps in some centres and certain individuals — morbidity and mortality will be less with home-based therapies.”

Northern residents face unique challenges

Fear aside, not everyone is eligible for home-based therapies.

Both home dialysis options require patients to have the physical and mental capacities to perform the procedures on themselves or to have caregivers who can do it for them, which might not be possible for some elderly patients.

Living in northern Saskatchewan poses unique challenges that can make some people ineligible for these treatments. For example, requirements around storage space for both peritoneal and home hemodialysis can be a barrier in the north, where many people live in overcrowded homes.

Patients on peritoneal dialysis need storage space roughly the size of a double bed to keep six weeks worth of cleaning solution. Because people in northern communities have expressed concern about lack of storage space, Kappel said the SHA is looking into the possibility of people being able to store cleaning solution at health centres in their communities.

Patients on home hemodialysis need room for a large hemodialysis machine, which the SHA provides free of charge to patients who meet certain criteria. Installing a home hemodialysis machine requires people to be able to make plumbing and electrical renovations, and people who don’t own their own homes must have the agreement of their landlords to go ahead with this.

Before giving someone a machine, the SHA looks at water quality in homes and whether power outages are problematic — both of which can be issues in northern Saskatchewan.

“Hemodialysis really depends on ultrapure water, so if you have a lot of boil water advisories or your water is simply not good enough, then home hemodialysis may not be an option or will not be an option for you,” Kappel said.

Dr. Joanne Kappel, a nephrologist with the Saskatchewan Health Authority, stands for a photo near a dialysis station at St. Paul’s Hospital on April 26, 2019. There she provided a demonstration of a hemodialysis machine and peritoneal dialysis cycler, two machines essential in the process of dialysis. Morgan Modjeski/The Saskatoon StarPhoenix

Patients also need to be able to pay higher water and electrical bills, which tend to go up about $200 a month when the machine is being used.

When the Bouviers were considering their options, Napoleon was worried about the amount of work involved in peritoneal dialysis. Storage space was also a concern; the Bouvier’s Ile à la Crosse home is too small to accommodate bags of cleaning solution or a hemodialysis machine.

Napoleon resigned himself to twice-weekly trips to the province’s northernmost hemodialysis satellite unit in Prince Albert.

Monique refuses to think of the drives as a burden.

“I would never say I’m tired,” she says. “I just do it. I think of the vows I made: For better or for worse.”

She knits during the long drives and has produced countless blankets and sweaters over the last three years — some of which she’s gifted to the nursing staff at the Prince Albert hospital. Occasionally, she’ll knit beside Napoleon as his blood is filtered. Other times, she’ll doze in the hallway.

Northern dialysis clinics at maximum capacity

For northern dialysis patients like Napoleon who are unable or unwilling to have dialysis done at home, the main hemodialysis centre is St. Paul’s Hospital in Saskatoon.

If patients are stable — which means they have blood pressure in normal ranges and don’t have chest pain or shortness of breath while on hemodialysis — they can go to smaller satellite hemodialysis centres in Prince Albert, North Battleford, Tisdale or Lloydminster.

In southern Saskatchewan, the main treatment centre is in Regina, with satellite clinics in Yorkton, Swift Current, Moose Jaw and Estevan.

More than half of Saskatchewan’s hemodialysis patients last year — 57 per cent — had their points of care in the north of the province.

Kappel said all clinics in the north are running at maximum capacity and have wait-lists. If people can’t get into the satellite clinic nearest them, they must drive to St. Paul’s Hospital in Saskatoon, which is running overcapacity.

“Because dialysis is a life-saving therapy, even if we’re full we make room,” Kappel said. “So sometimes that means our units are overcrowded.”

St. Paul’s Hospital has 25 hemodialysis stations that run six days a week and are used by three patients per day. Patients typically need to come three times a week, so the hospital can comfortably accommodate 150 people a week.

Across the street from the hospital, at the affiliated Cameco Community Renal Health Centre, 18 stations provide treatment to 108 patients a week.

The St. Paul’s unit is the only unit in the northern half of the province that can accommodate extra beds. Kappel said as many as 31 stations can be crammed into the unit at any given time.

The SHA used to reserve two beds at the Cameco Community Renal Health Centre for people travelling through Saskatoon, but that program was suspended this spring because the beds are so desperately needed by people living in the province.

Need for dialysis on the rise

Kappel said demand for dialysis — particularly in the north — has increased substantially in the three decades she has worked with kidney patients in the province.

That’s because the most common causes of kidney failure — diabetes and high blood pressure — are on the rise. Both conditions are more prevalent in the Indigenous population than the population as a whole and, because there is a higher proportion of Indigenous people in northern Saskatchewan compared to the province generally, the burden of kidney failure and demand for dialysis in the north is high.

Kappel said the province has to start working on preventing end-stage kidney disease or the problem will only get worse.

“Dialysis is only one part of the equation,” she said.

“If we don’t do something upstream and don’t do something to tackle the problems of diabetes and hypertension, we’re going to keep ending up building more and more dialysis units. We need to take that prevention piece of this puzzle and, not to do that, I think, is very short sighted and is going to put our children in a bad spot because there’s not enough money to be continuing providing dialysis.”

Until the causes of end-stage kidney failure are under control, the province still needs to find ways to make the treatment available to a growing number of people.

One solution is to build more satellite dialysis centres. But Kappel said the province can’t simply build satellite clinics in all communities. A list of criteria needs to be met before satellite dialysis clinics can be launched, including a “critical mass” of hemodialysis patients in the community and surrounding area, buy-in from staff at local health clinics and appropriate infrastructure at the centres.

In this spring’s provincial budget, the government pledged $700,000 in new funding to create a satellite dialysis clinic in Meadow Lake. When built, it will be the province’s northernmost dialysis centre and could provide treatment for 16 to 24 dialysis patients who would otherwise have to travel to Saskatoon or other centres.

SHA spokesman Doug Dahl said the SHA is assessing the Meadow Lake health centre to determine the optimum size and space for a dialysis site. There’s no target date yet for when it will open.

As of Dec. 31, 2018, there were 21 dialysis patients living within 100 kilometres of Meadow Lake, 36 within 150 kilometres of the city and 43 within 200 kilometres.

Napoleon and Monique, who live just over 200 kilometres north of Meadow Lake, hope they can secure one of the beds when the new facility opens. If they can, it would cut their twice-weekly commute nearly in half, to just four and a half hours round trip.

Travel burden is ‘tremendous’

Napoleon and Monique say their dialysis-related travel between Ile à la Crosse and Prince Albert costs them about $1,200 a month. Their children have organized fundraisers, including raffles and a fish derby, to help ease the financial burden. Such events are common in northern Saskatchewan, where people often need financial support to travel for medical reasons.

Joyce VanDeurzen, executive director of the Saskatchewan branch of the Kidney Foundation of Canada, said it’s “just crazy” that people in northern Saskatchewan have to travel so much for a life-saving treatment.

“It’s a tremendous burden in terms of time, money, energy spent. It’s difficult to maintain any kind of employment when, not only do you have your three-times-a-week dialysis treatment, but you have these long drives.”

Late last year, the Saskatchewan NDP commissioned a business plan looking at the feasibility of putting a single home hemodialysis bed in the St. Joseph’s Health Centre in Ile à la Crosse. The plan estimated it would cost $46,000 to buy the machine and related equipment, which would be able to help four patients.

At the time the plan was put together in the fall of 2018, nine dialysis patients lived within a 100-mile (161-kilometre) radius of Ile à la Crosse who were travelling to dialysis units in the south, each spending about $4,500 a month to travel to appointments, the plan said.

“Imagine how much money and stress and time you could save the families,” said Buckley Belanger, the MLA who represents northwest Saskatchewan.

He said he has heard from constituents in his riding who are spending their lives in taxis going to and from dialysis appointments. The sickest patients in La Loche, roughly 160 kilometres northwest of Ile à la Crosse, have to drive seven hours one-way to Saskatoon for appointments, stay overnight, then drive home and repeat the journey almost as soon as they get back. Hotel stays, meals on the road and gas can cost up to $2,000 a month.

“The cost is tremendous,” Belanger says. “Between the physical strain on their health and the financial strain, I don’t know how they can continue to sustain that kind of schedule.”

Health centres have their own water filtration systems, which means they have access to the ultrapure water needed for home hemodialysis machines even if they are in communities with regular boil water advisories that would disqualify private homes from being able to run the machines.

Though northern patients have expressed interest in home hemodialysis machines being installed in their communities’ health centres, Kappel said this hasn’t happened anywhere in the province yet.

“It’s not without trying,” she said.

Health authority staff have been working with northern communities to determine if their health centres can support home hemodialysis beds and if staff are willing and able to take on the extra workload the bed would create.

“There are multiple reasons why this hasn’t happened before,” Kappel said, but “absolutely it’s on the horizon.”

Until then, Napoleon and Monique will keep driving.