In the last moments before Bob Blackwood died, the doctor paused and, in front of a hushed crowd of operating-room staff, thanked Mr. Blackwood for the gift he was about to give.
It was the summer of 2017 and Mr. Blackwood, a 63-year-old former lawyer with a rare and excruciating neurological disorder, was about to become the first patient in Quebec’s eastern townships to donate his organs after receiving a medically assisted death.
“[The doctor] said he hoped that this was something they’ll be able to do more in the future to help save lives,” said Heather Ross, Mr. Blackwood’s widow. “It was just lovely how he put it.”
Despite having to leave the operating suite one minute after her husband died so that his kidneys could be removed, Ms. Ross recalled the organ-donation process as a bright spot in an otherwise black time.
She would like to see more grievously ill patients have the same opportunity – and now they may, thanks in part to the first set of national guidelines for organ donation after medical assistance in dying in Canada.
Published Monday in the Canadian Medical Association Journal (CMAJ,) the new guidelines from Canadian Blood Services tackle a slew of ethical and practical quandaries that have made some provincial organ-donation organizations reluctant to pursue hearts, lungs, livers and kidneys from patients who choose to die with the help of a physician. While not binding, the document offers a road map for the organizations and hospitals who want to navigate this new terrain.
So far, only 30 patients – including Mr. Blackwood – have donated organs after medical assistance in dying, or MAID, since the procedure became legal three years ago, while at least 6,749 Canadians have undergone MAID deaths.
“Initially, organ-donation organizations really wanted to stay away from organ donation after medical aid in dying," said James Downar, the head of the division of palliative care at the University of Ottawa’s faculty of medicine, and the lead author of the new guidance document. “I think most people felt this was a fairly controversial issue.”
The big fear, Dr. Downar said, was that even the slightest hint of inappropriate pressure on a patient considering MAID could undermine the organ-donation movement in a country where 242 people died waiting for transplants in 2017, the most recent year for which figures are available.
Dr. Downar said some provincial organ-donation organizations became more open to the idea after they were “inundated” with requests from patients themselves.
In response, hospitals and organ-donation organizations turned to Canadian Blood Services, which worked with the Canadian Neurological Sciences Federation, the Canadian Critical Care Society, the Canadian Society of Transplantation and the Canadian Association of Critical Care Nurses to develop the ethical, legal and clinical guidance published Monday.
The guidance document answers some thorny questions. For example: Should MAID patients be allowed to choose who gets their organs? (For the most part, no.)
Should medical staff who oppose assisted dying on moral grounds be allowed to opt out of the organ-donation procedure that follows? (Yes, so long as their refusal doesn’t jeopardize the transplant.)
Should organ-donation organizations be allowed to approach patients who have decided to undergo MAID, or must they wait for approved patients to ask about organ donation? (That depends on the province, but there must always be a firewall between the MAID decision, which should be taken first, and the decision to donate.)
Besides hesitancy from parts of the health-care system, there are other reasons so few transplants have followed assisted deaths in Canada.
The major impediment is that, in about two-thirds of MAID cases, the underlying illness is metastatic cancer, which usually makes organs unsuitable for transplant.
Most donations after MAID have come from patients with high spinal-cord injuries or neurological diseases such as amyotrophic lateral sclerosis, or ALS, according to Ian Ball, the director of critical care research at the University of Western Ontario’s Schulich School of Medicine & Dentistry.
Dr. Ball is about to submit for publication a paper reviewing all 30 known cases of patients donating organs after MAID, most of which have taken place in Ontario, Quebec and British Columbia.
Another barrier is that MAID patients who want to donate their organs have to die in an operating room, the way Bob Blackwood did.
“Some people are actually willing to change their mind and have their deaths in hospital," Dr. Ball said. "But in many cases they say, 'Well, never mind then, I won’t be a donor.’”
For her part, Ms. Ross, a veterinary surgeon, did not mind saying goodbye to her husband in the operating room of a Sherbrooke hospital, even though she was not allowed to hold his hand as he died. He had already been prepped for surgery.
It was more important to the couple that Mr. Blackwood be allowed to fulfill a final wish that gave him courage and purpose during the last week of his life, when the pain of his neurological disease, multiple systems atrophy, felt especially crushing.
“Bob was so happy that he was finally going to be out of pain and he was going to be able to maybe save other people’s lives,” Ms. Ross said. "And that’s exactly what happened.”
For Canadian MAID patients who want to donate organs but are set on dying at home, the new guidelines float a solution pioneered by the Dutch.
In two cases described in a separate article in the CMAJ last year, doctors in the Netherlands, where assisted dying is also legal, put MAID patients into a deep sleep at home, surrounded by their loved ones, then transferred them by ambulance to hospital to inject the lethal cocktail and remove their organs.
Their bodies were returned home four hours later.
“It’s the optimal donation situation,” said Johannes Mulder, a Dutch family physician who chaired the committee that produced his country’s first guidelines on organ donation after assisted death, "but also optimal for the patient’s experience.”