Special Report: The six-year wait for a kidney in B.C.

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Special Report: The six-year wait for a kidney in B.C.

BY RICHARD WATTS, TIMES COLONIST MARCH 6, 2011
 
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Richard Ordell, 43, received a kidney transplant 10 years ago when his aunt stepped forward to become a living donor. But two years ago the organ failed, and Ordell now spends three mornings a week on dialysis. He takes long naps on his days off, and and he's in bed early every night, usually before 9 p.m. See the video at timescolonist.com
Photograph by: Adrian Lam, Times Colonist, Times Colonist

Residents of B.C. suffering from kidney failure wait up to an average of almost six years for a transplant - the longest wait time in the country, and a full two years more than the national average.

According to statistics from the Canadian Organ Replacement Register, which were released in January by the Canadian Institute of Health Information, the median wait time for a kidney transplant from a deceased donor in B.C. is 5.8 years.

The shortest median wait time was in Nova Scotia, at just over two years. Nationally, the median wait time is just under 3.5 years.

Kidneys are the most commonly transplanted organ in Canada -last year, a record 189 kidney transplants were completed in B.C., surpassing the previous record of 172 in 2007, yet currently, there are another 299 people on the wait list, says B.C. Transplant, the publicly funded agency that co-ordinates transplants across the province.

Transplant specialists and medical administrators are unable to explain why B.C.'s performance trails the rest of Canada so dramatically -the second-longest times are in Ontario, but even there, patients wait about 4 1 /2 years, a full year less than in B.C.

Some suggest that demographics are partly to blame, noting that B.C. attracts an older retired population, whose kidneys are more likely to fail and who are thus more likely to end up on dialysis for longer periods.

But most agree that the province's record would greatly improve if there was better planning and co-ordination in a system that is best described as a patchwork of policies and programs, both in B.C. and across Canada. Because while statistics show that Canadians overwhelmingly support organ donations, few actually sign up to do so, and even fewer actually have their organs donated when they die.

On a national scale, outgoing Esquimalt-Juan de Fuca MP Keith Martin, a medical doctor, has been pushing for a Canadawide donor registry that would considerably boost the number of donors just by co-ordinating and standardizing information.

And in B.C., the transplant agency is hoping to launch a network of in-hospital organ donation co-ordinators some time this year.

rwatts@timescolonist.com

The plan, which would be a first in Canada, calls for specialized personnel in six major, but as yet unspecified, hospitals who would focus primarily on transplants and donations.

These organ donation coordinators would have clinical training, either as senior nurses or doctors, and they would be tasked with everything from talking with bereaved families about the possibility of donating organs to scheduling times in operating rooms.

Dr. Greg Grant, executive director of B.C. Transplant, is hopeful organ transplant coordinators can improve B.C.'s performance on kidney transplants by streamlining a process that happens at a time of grief.

The co-ordinators would be specially trained to liaise with doctors and families of potential donors. Currently, the subject of organ donation often isn't raised because medical staff are reluctant to intrude upon a family's grief or because it puts them in the difficult position of switching from trying to save a patient's life to then wanting to remove their organs for transplants.

"On the one hand, they are saying, 'I'm sorry your family member is not going to survive this.' But on the other hand, they are saying, 'We would like to use them for spare parts,' " Grant said.

"Physicians can feel conflicted in their responsibilities."

Grant said polling has suggested as many as 80 per cent of British Columbians are willing to donate their organs. But only about 17 per cent have actually signed up as organ donors.

And even then, people who have signed cards often don't become donors. If prospective donors have not discussed the issue with their families, loved ones are often too distraught to consider the idea at the time of death.

Yet, Grant argues, the process can actually be a good one for grieving friends and relatives.

"Organ donation is of a benefit not only to the families that receive but, from what I've seen, it helps out the donor families, too," said Grant.

"We see that a lot. It helps them make sense of things and gives them some closure to know that something good might be coming out of this terrible tragedy," he said.

Organ transplant co-ordinators are also expected to relieve pressure on hospital staff and make the procedures a more standard element of hospital routine.

Transplants require an incredible amount of preparations at the last minute -assembling life-support and surgical teams, preparing the donor and the recipient for surgery, booking operating room time -so having the co-ordinators "kind of means you have an extra pair of hands," said Grant.

"There is a lot of clinical stuff that needs to happen right at the time donation occurs," he said.

"That's a lot of work. And when you look at intensive care units and emergency departments across the country, they are already working at full capacity."

Grant said one of the tricky aspects of boosting the number of transplants is making people aware that these types of operations save money and resources over the long term.

For example, if a patient dies at one hospital and the organs are harvested, they might be saving the lives of people currently on dialysis or life support at other facilities.

"If you have one patient at one ICU who becomes a donor, it may be sparing ICU resources at three other hospitals," said Grant.

Getting people to understand the benefits of organ donation -beyond, of course, the saving of lives -is something MP Keith Martin has been trying to do for years in the House of Commons.

Martin, who has been an MP for 17 years -for the Reform, Canadian Alliance and Liberal parties -has decided not to run in the next federal election, and says his failure to improve the transplant picture is one of his biggest frustrations.

"All the work has been done," said Martin. "All that it requires now is a minimal amount of effort to save thousands of lives and millions of dollars."

According to the Canadian Institute for Health Information report on transplants released in January, if transplant organs were available for all the kidney patients on wait lists around the country, the savings would amount to $150 million each year.

The report says that dialysis treatment to clean a patient's blood after kidney function has ceased, costs about $60,000 per year. However, a transplant costs $23,000 to perform and an average of $6,000 per year in followup medication.

Still, figures released by the Canadian Blood Services show Canada lags behind other countries, with 14 kidney donors per million people, behind the U.S. with 26-28 donors per million and Spain with more than 30.

Martin said the principal reason is political neglect. "Everybody agrees on this [improving transplant numbers]. It's just nobody is getting on with the job."

No one needs to tell Richard Ordell, of Saanich, of the benefits of speeding up the process.

The 43-year-old was diagnosed with kidney disease about 10 years ago after a long history of high blood pressure. His aunt stepped forward to become a living donor and provided one of hers for transplant. Two years ago the organ failed, and he has been on full dialysis ever since, exhausted, unable to work and living on a disability pension.

He spends three mornings a week on dialysis. On his days off, he takes long naps, and he's in bed early every night, usually before 9 p.m.

"It's pretty disheartening," said Ordell.

Some movement, however, does appear to be underway at the national level undertaken by the Canadian Blood Services.

Two years ago, all the nation's provincial and territorial deputy ministers of health tasked the Canadian Blood Services to come up with recommendations to boost the number of transplants.

C hris Brennan, Canadian Blood Services spokesman for organ and tissue transplants/donations, said the preliminary report was circulated in December and the final report is due this year.

Brennan said so far, consultations have revealed some obvious sticking points now slowing down donations rates in Canada. The most obvious is the patchwork from province to province of donor information.

For example, in B.C. consent to become a donor is recorded at a separate registry administered by B.C. Transplant. But other provinces do things like record and attach donor consent to driver's licences or attach them to health-care card information.

Brennan said these different registries can neither communicate with each other nor even follow the patient across the country.

"So if you move, like you sign up in British Columbia and move to Ontario, that consent doesn't move with you," said Brennan in a telephone interview from Ottawa.

"There is no connection or co-ordination between the two systems, so there is no way for the medical people in Ontario to know you agreed to become a donor in British Columbia," he said.

Martin would like a national donor registry to insist upon notification of next of kin when a person agrees to donate.

Nobody's distraught family should be surprised at the moment of a sudden death with the notion of organ donation.

He speculated that one requirement alone could double the number of organs available for transplant and would cost "zero" in terms of taxpayer dollars.

Brennan said some other countries, like Spain, where donation rates are the highest in the world, have moved to a system of "presumed consent."

That is, everybody is an organ donor unless they make the effort to deliberately opt out.

He said polling information in Canada has revealed Canadians, while overwhelmingly supportive of organ transplants, get squeamish at the notion of becoming organ donors without any expressed consent.

Approval slips to about 50 per cent, splitting the country in two.

Regardless, Brennan said consultations with Spanish health officials have revealed presumed consent gets less credit for that country's high donation rates than the Spanish network of organ donation coordinators in hospital -similar to what B.C. hopes to institute this year.

HOW DO YOU BECOME AN ORGAN DONOR?

All you need to do to become an organ donor in B.C. is to fill out a form, indicating your willingness to donate organs upon your death.

The form was created in 1977 to replace the previous system of stickers affixed to B.C. Health Care Cards or driver's licences. Health-care providers prefer the registry since the information is accessible as soon as a health-care card number gets entered upon admission to hospital.

When you register, you can even choose which organs you don't want to donate -their are nine boxes to tick: Heart, lung, liver, kidneys, pancreas, bowel, eyes, skin and bone.

Once received, the form becomes part of the registry that is administered by B.C. Transplant, an agency established in 1986 by government to direct, deliver or contract for all organ transplant services.

The B.C. Transplant donor form is available at Driver's Service Centre of the Motor Vehicles Branch, London Drugs, ICBC Autoplan Brokers, ICBC Claim Centres and most doctors' offices. It can also be completed online at www.transplant.bc.ca.

Read more: http://www.timescolonist.com/health/Special+Report+year+wait+kidney/4392589/story.html#ixzz1FtZcKYiS