What could be more difficult than asking the father of a son who has just died if he is willing to donate his child’s organs? Not much, according to University of Rhode Island professor Mark L. Robbins, who will soon embark on a new study to answer a vexing question: How can those whose job it is to ask that question do a better job?
Nationwide, more than 67,000 people await organ donations, according to United Network for Organ Sharing, a Richmond, Va. based national group. Nearly 5,000 will die waiting this year. But according to Robbins, only half of those who are asked to donate a family member’s organs agree to do so. That percentage needs to be much higher, he said.
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In March, Robbins will study a new approach to asking that question. If it proves successful, the techniques he proposes may become part of the standard training that those in the organ procurement field receive. He hopes to improve their success rate to 80 or 85 percent.
U.S. laws prohibit the taking of a deceased person’s organs without the consent of his or her next of kin – even if the deceased person has already indicated a desire to be an organ donor. While many factors play into a family’s decision on whether to give, Robbins said one of the key reasons many do not is that they have been asked the wrong way.
New regulations require that those who ask the question be specially trained to do so. But experts say that historically, those who have asked have often been ill-prepared to answer the family’s questions. And frequently, they are just as unprepared to judge how ready the family is to answer the question.
And when the question is asked the wrong way, chances are the family will say no, he said.
”In some ways we don’t handle that very well,” Robbins said.
Who asks the question depends on the doctor and hospital. Some doctors will ask the family and also guide them through their options. Others will refer the entire process to an Organ Procurement Organization – a group that specializes in acquiring organs for patients who need them. By law, hospitals must report every death to such an organization.
In Rhode Island, all hospitals report to the New England Organ Bank of Newton, Mass., the federally designated procurement organization that serves most of New England. The organ bank, the oldest of its kind in the nation, has a Providence office.
The study Robbins will conduct this spring – which he said will be the largest of its kind ever undertaken in the United States – will focus on those who work in organ procurement organizations like the organ bank. The study is being funded by a $1.2 million grant from the U.S. Department of Health and Human Services, which also presented the award o the South East Organ Procurement Foundation, of Richmond, Va.
Robbins and his research team will select 16 organ procurement organizations. Eight of them will be subject to the new training; the other eight will be the study’s control group. Researchers then will use a variety of surveys to determine how effective the training program has been in comparison to the control group, Robbins said. The training will take place in Atlanta and Charlotte, N.C. All of the study’s participants will be drawn from organ procurement organizations from Louisiana to Georgia.
The group that undergoes the training will learn to gauge the readiness of a family to make a decision, and how to respond to it. The techniques are based on the theory that people make decisions in stages, not all at once. For example, research shows that 40 percent of smokers are in the “pre-contemplative” stage – that is, they have no plans to quit within the next six months. Another 40 percent are now in the “contemplative” stage, weighing the pros and cons. A final 20 percent is in the “prepared” stage, meaning that they are ready to begin taking actions to help them quit.
Eventually, someone who wants to quit will be “in-maintenance,” meaning that he or she has stopped and is now attempting to keep his or her habit from resurfacing.
Now, this method – called the Transtheoretical Model, as developed by URI professor James O. Prochaska – will be applied to teaching organ procurement professionals. They will learn to recognize these stages and the best ways to deal with each one.
While Robbins acknowledged that families face a “horrendous” decision when asked to donate organs, he noted that giving organs could often help people to feel better, since they are helping to save the life of someone else. The problem has been that many families are not told this, Robbins said. Doctors often do not have time to sit down with the family for an hour or two and discuss their options. Many are uncomfortable about asking the question altogether. The result has been that the question has been blurted out, rather than asked in a sensitive way, he said.
Further complicating the problem is that the family often has little time to make a decision. All donor candidates are brain dead, meaning they have no higher brain functions and have no chance of coming back to life. But in order for a person’s organs to be viable, they must be retrieved while the person still has his or her lower brain functions – the ones that control the heart and lungs – running. This is because organs must have blood and air running through them in order for them to be taken out of the body and planted into someone else’s.
Depending on the deceased person’s circumstances, the organ procurement person has anywhere from a few days to a few hours to convince the family to donate. Robbins admitted that that may not be enough time for some families.
But Richard Luskin, executive director of the New England Organ Bank, said a short deadline does not necessarily guarantee failure. People are remarkably resilient, he said, and are often able to make such decisions under duress, if they are approached the right way.
Luskin said his procurement coordinators receive a combination of classroom and field training, in which they work with experienced professionals.
Deborah Gard, director of risk management for Women & Infants Hospital, who plays a role in coordinating the process of asking family members for organ donations, said she is pleased that Robbins in undertaking this study. Many people she has dealt with are uninformed about organ donation, she said.
”I really do believe the community is not aware of the potential that exists for organ donation,” Gard said.
But while Robbins seems optimistic, he noted that since this is the first time such a study has been conducted, he cannot be certain of the results.
”It’s not like we’ve done 10 other surveys and we know exactly how it will turn out,” he said. “I can’t say I know what the outcomes will be.”
