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The standards for defining death in Canada vary so much that the hospital where a dying person ends up may affect when they are declared dead - and that has some Canadian doctors concerned about the implications for organ donation, CBC’s the fifth estate has learned.
There are about 2,000 organs transplanted in Canada every year, but hundreds of people die while on a waiting list because of a critical shortage of life-saving organs.
Across the country, physicians involved in organ donation must adhere to what’s known as the ‘dead donor rule’. It seems simple - organs cannot be procured until after the donor has died.
The problem is how to pinpoint the exact time of death, says the University of Alberta’s director of critical care, Dr. David Zygun.
“The challenge is that death is a process, and when it’s a process, taking it to one specific time is very difficult,” he told the fifth estate’s Bob McKeown.
The result is that the length of time before a person can be officially declared dead in Canada and around the world may depend less on medical science than where the hospital is located.
Health lawyer Jacqueline Shaw in Halifax calls it “postal code death.”
“That doesn’t line up with what most people think death is - they think, well, it’s the same standard everywhere,” she said.
The national guidelines for pronouncing cardiac death for organ donation require doctors to wait at least five minutes after the heart stops beating.
That is the policy in place at Toronto’s Sunnybrook Hospital and the Toronto General Hospital. But across the city at St. Michael’s hospital, the wait is at least 10 minutes.
In some parts of the United States, the amount of time before death can be declared is much shorter. In Pittsburgh, Pennsylvania, it is two minutes, while in Denver, Colorado, the wait is just 75 seconds.
In Italy, it takes longer - doctors must wait a minimum of 20 minutes after the heart stops to declare death.
There is another layer of complication: at least three Canadian provinces - Manitoba, New Brunswick and Saskatchewan - do not accept cardiac death as a standard; they rely only on brain death.
Even if a province has adopted the cardiac standard, individual hospitals can make their own decisions. In Alberta, the Foothills hospital in Calgary accepts only brain death, while the University of Alberta Hospital in Edmonton recognizes both brain and cardiac death.
Why so much variation?
In Canada, organ donor rates lag behind the United States and Europe. Here, more than 4,000 people are on transplant waiting lists, and each year about 300 people die waiting.
For years, the standard measurement of death in Canada was brain death: people were not declared deceased until after the brain stopped functioning.
In 2005, the guidelines for declaring death were changed, so that more organs could be donated and procured. Now the national standard also includes “donation after cardiac death,” or DCD. Some provinces and hospitals chose to adopt cardiac death, while others still use brain death as their only standard.
Dr. Sam Shemie of McGill University, an intensive care specialist at the Montreal Children’s hospital, was influential in pushing for this new definition to save Canadians’ lives with more transplants.
“DCD has accounted for over 1,000 transplants in this country that otherwise would never have occurred,” he told McKeown.
Despite that success, the change to DCD has prompted an intense but largely behind-the-scenes debate in medical circles about the consequences for organ donation.
“Some physicians, including myself, believe there is genuine debate about whether organ donors are already dead,” said Dr. Ari Joffe, who works in the intensive care unit at the Stollery Children’s hospital in Edmonton.
“I don’t want to be misinterpreted because I do definitely support organ donation, but I have concerns about the process involved in DCD,” he told McKeown.
Dr. Joffe questions whether a five-minute wait after the heart stops beating is long enough to be certain that cardiac death is irreversible. He points out that medical interventions like CPR often bring patients back after five minutes without a pulse.
He argues that it would take at least 20 or 30 minutes to be sure death is irreversible, but at that point, Dr. Joffe says the quality of the donated organs may no longer be adequate. Doctors need to harvest organs within two hours after the heart stops or they may deteriorate beyond use.
For some doctors, DCD also raises ethical concerns. Intensive care unit physicians are trying to prolong the patient’s life, while the transplant team is focused on saving lives of organ donation recipients.
Dr. Shemie said the national guidelines indicate there must be strict separation between those two teams, to ensure the transplant team has no role in determining when death occurs.
“The first sacrosanct rule in organ donation in this country – it’s a moral rule and it’s a law – is that there needs to be strict separation of teams,” Dr. Shemie told McKeown.
But Dr. Joffe says some critical care specialists may still feel pressure.
“Although we’re not the surgeons taking the organs, we’re still part of the transplant team. My concern is, I don’t think we can separate those processes as clearly as has been stated.”
Life and death decisions
The families of potential donors can also feel pressure to make critical life and death decisions.
In its documentary Dead Enough, the fifth estate has the stories of two families who both faced difficult decisions about organ donation, because their loved ones were not expected to survive severe brain injuries.
When her daughter was critically injured and paralyzed in a car crash, for example, Sharon Thompson was at her bedside in a Calgary hospital around the clock.
Thompson says she was approached to consent to organ donation, and asked to consider taking her daughter off life support.
“When people are in an emotional state, I don’t think that’s the time to be asking those questions. Because the emotional roller-coaster we were on for, I would say, at least three of those six weeks … that’s not a great time to be having to make that decision too, because you’re not thinking,” she told McKeown.
Thompson chose not to take her daughter off life support, and Brandice Thompson made a remarkable recovery.
A delay before ending life support was also what made the difference between life and death for Shane Becker, in Vancouver, BC.
His family was planning to donate his organs after the 25-year-old college student suffered a fall that severely injured his brain.
When his mother arrived at the Vancouver General Hospital, she said she was told that her son’s brain would soon stop functioning, and he would not recover.
As she was struggling with the news, she was approached by a hospital social worker. Donna Becker said she was asked to sign the organ donation certificate.
“I just made a decision to do so knowing Shane would’ve wanted me to,” she told McKeown.
But the decision to take Becker off life support had to be postponed. The family wanted to wait for his father, who had to drive from the BC interior to say his final goodbye.
While they were waiting, Becker’s mother, a nurse, noticed a tiny change in her son.
“When we were all holding his hand, he did, there was definitely some change in his grasp. It became a little stronger, especially when we spoke to him,” she told McKeown.
She also noticed that his pupils were now constricted, instead of fixed and dilated.
Becker was never officially declared dead. But the medical team revised their original prognosis, and began surgery on his brain at 11 am the next morning. He spent weeks in a medically-induced coma, then went through months of rehabilitation, relearning almost everything.
Now Becker is 32, married and a father.
“Looking back on it, if I had passed away that night I would have wanted my body to go to good use and help people. But on the other side of the story, there’s so much of life and medical stuff, more specifically the brain, that they just don’t know and can’t explain,” he told McKeown.
In a statement sent to the fifth estate just before broadcast, the Vancouver General Hospital now says it was “premature and highly unusual” for staff to have raised organ donation with Becker’s family, but that there was “never a possibility that this case could have proceeded to organ donation without the patient having progressed to brain death”. Brain death, not cardiac death, was the standard in BC at the time.
More public debate
What happened to the Thompson and Becker families reflects the complexity of the life and death decisions at stake in the DCD debate.
So far, the debate over defining death has mostly been conducted in the medical community, out of public view.
Health lawyer Shaw says that may explain why one national survey suggests almost a quarter of Canadians feared physicians might declare death prematurely in order to expedite the procurement of organs.
“That's a serious amount of concern in the population, and it could certainly be affecting donation rates. I think that we're not doing ourselves justice by not providing frank information about death and about the procedures that go on in organ donation to patients,” she told McKeown.
At the Stollery Children’s Hospital in Edmonton, Joffe agrees the public should be more involved in the debate on how death is defined. He wants to make sure the families of potential donors know what’s at stake with DCD, so they can make a truly informed decision.
But rather than waiting longer to ensure donors are irreversibly dead, he suggests Canadians should discuss the implications of changing - or even scrapping - the ‘dead donor’ rule.
“To me the more important question is can we violate the dead donor rule? And can we allow informed consent to organ donation prior to death?”
He says if we recognize that in some cases organs may already being taken from donors who are in the process of dying, but not irreversibly dead yet, Joffe suggests the old rule may no longer be necessary.
In Montreal, Dr. Shemie says what the Canadian public needs to know most of all is that there is a system that works to both save lives through transplants - and to protect dying patients who could become donors.
“We know that organ donation saves lives, and we know that we have standards in this country that protect patients at the end of life to make sure that all efforts are provided to those patients. But when that can’t happen and that patient’s going to die, then we’re able to provide the chance to donate, okay,” he told McKeown.
“So, standards are in place so that public trust is maintained. I can assure the public that we do a great and very credible job in doing that.”
Almost all of the physicians the fifth estate consulted for this story emphasized that they support organ donation, which unquestionably saves lives.