Some Organ Donor Families Would Change Their Minds If Asked Again

March 20, 1998

Investigators from Washington University School of Medicine in St. Louis and Mid-America Transplant Services have found that a significant number of organ donor families would not donate their loved one's organs if asked to do so again.

The researchers also found that a significant portion of families who chose not to donate would change their minds and give consent if the opportunity arose again. The findings, reported in the March issue of the journal Psychosomatic Medicine, show that about one in five families would do things differently the next time around.

Organs and tissues procured from one donor can save the lives of up to seven people. More than 50 thousand are waiting for kidneys, hearts, livers and other organs in the United States, and of those, one person dies every nine minutes, still waiting.

"At a time when there is a real scarcity of donated organs and tissues in this country, it's not to anyone's advantage to have people feeling they did not do the right thing," said Barry A. Hong, PhD, associate professor of psychiatry and medicine at the School of Medicine.

Hong's research team surveyed 225 family members who had been approached about donating the organs of a relative. Regardless of their decision, family members were surveyed at least one year after the experience.

Of those surveyed, 178 were satisfied with their decision. Another 47 reported they were not. Of those, 22 were donor family members who said they would not donate again. The remaining 25 were non-donor family members who would now donate if given the opportunity.

"I'm concerned that 20 percent of these people think they should have done something else," Hong said. "That's a sizable proportion, and I think it's one that should be worrisome to the transplant community."

Hong and colleagues looked at numerous factors, including previous knowledge of transplantation, the request process, characteristics of the deceased and medical/hospital factors. "We thought that looking at all of the factors together would give us a more realistic idea of what influences both the decision regarding donation and the satisfaction with that decision," Hong said.

Those who were comfortable with their decisions to donate tended to be more highly educated and had previously discussed the issue with their families. In fact, prior discussion was one of the most important factors involved both in donation and in later satisfaction. According to Hong, people who want to donate their organs at the time of death can ease the burden on family members by making those intentions clear. Families must consent to donation, regardless of whether a donor card has been signed, and those families who were most satisfied were certain they were following the wishes of their loved ones.

Surprisingly, religion was an important factor influencing satisfaction. The researchers found that those who chose to donate but later were dissatisfied tended to go to church more often and to be more religious than those who were satisfied. Hong is not sure why, but says the issue warrants further investigation.

The researchers also found that the larger the number of family members involved in the decision, the less likely a donation would occur. Families are more likely to agree to donate when their loved one is at a community hospital than at a larger university medical center. How many people approached the family about donation also was a factor. Being approached by several health care workers made family members leery.

"How you're asked, who does the asking, how sensitive they are to the problems going on in the family: those are very important issues, and I'm not sure we give those issues enough attention," Hong said.

What happens after a donation may be just as important to the family's ultimate peace of mind. Hong believes it is critical that both the families who consent to donate and those who refuse receive support for their decision.

"I think sometimes families are curious where the organs went and whether they helped to save someone, and I think some things could and should be done to assure donor families that their loved one helped save lives," Hong said.
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Center for Advancing Health

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