TORONTO - The way that relatives of a brain-dead patient are approached can have an impact on whether they consent to donate the organs of their loved one, a new study suggests.
Interviews conducted with relatives at a later date have shown that about one-third of those who refused donation would not make the same decision again, according to the study published Wednesday in the British Medical Journal.
The researchers, based in the United Kingdom, decided to look at how medical officials asked the pivotal question, and what could be done to modify the way it was asked to increase the number of organs available for transplant.
"In the U.K. we have about 40 per cent of our (potential) organ donors we don't take organs from because the family refuses consent," explained one of the researchers, Dr. Duncan Young of John Radcliffe Hospital in Oxford.
"And we also know that these families, if you interview them later, either regret their decision or say they would have made a different decision ... and that suggests that when they said no to organ donation originally it wasn't based on some longstanding, deeply held belief but was possibly related to the way people asked the question."
The team analyzed 20 previous studies, and found a number of issues linked to relatives either saying yes or no to harvesting organs.
"If you looked after the relative well, if you're polite when you made the request, if you ask it in a private place rather than in a public place, you're much more likely to get agreement from the relatives," Young said in a telephone interview.
But there were other considerations that were slightly less obvious, he said, noting that the seniority of the person doing the asking makes a difference.
As well, timing is an important issue, the findings suggest.
Young said "if you separate the interview that tells the relatives that their nearest and dearest is brain dead from asking for the organs, you get a better response."
Frank Markel, president and CEO of Trillium Gift of Life Network, which co-ordinates transplants in the province of Ontario, said the study's findings fit "exactly with our approach to speaking to donor families."
"As they say, one of the biggest determinants is whether the family is approached by an experienced requester, and we agree with that entirely," he said.
The Ontario network includes 21 intensive care nurses who work as organ and tissue donation co-ordinators, and who are highly trained to be effective in speaking to families about donation, Markel said.
Every three months, they bring the co-ordinators in from across the province to practise situations.
"We have actors who play the role of families. We give them scripts which we tailor to specific circumstances, and we ask our co-ordinators to do mock requests that are observed by our managers who give them feedback," Markel said.
"We keep data on the consent performance of our co-ordinators. We show them their data."
Some experienced physicians who are champions of organ donation have good results when they talk to families on their own, Markel said, but that isn't the case for their less experienced colleagues.
"One of the biggest frustrations is when a junior physician takes it upon himself or herself to speak to the family, and those results are disappointing," he said.
The best results occur when a co-ordinator works collaboratively with the physician, who introduces the co-ordinator as an expert on end-of-life issues and sets the stage, he said.
Results are second-best when the co-ordinator speaks to the family by herself, and "we get the worst results when the physicians speak to family by themselves," Markel said.
There were 591 transplants from deceased donors in Ontario last year. Currently, there are approximately 1,700 people on the waiting list for a transplant in Ontario, and about 4,000 across Canada.
Teresa Shafer, chief operating officer of the LifeGift Organ Donation Center in Texas, wrote an accompanying editorial in the British Medical Journal, and also talks of the importance of the co-ordinators working for the organ procurement organization.
"Requesting consent is not popping a question. It's a process," she said in an interview from Fort Worth.
"And it sometimes can take hours. And you know, nurses and doctors, they don't have hours to work with a family, gather information that they want and so on. That's what we're there to do."
In the U.K., Young said, an organ donor registry allows doctors - prior to speaking to the family - to check whether a brain-dead patient had signed an organ donor card. But that still doesn't compel the family to agree.
Young said there's a shortage of organs for donation in the U.K., and worldwide.
"The most immediate way we can increase the number of organs is probably to alter the way we ask for them," he said. "Because the biggest single cause of failing to get organs is the family's refusal."
