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Organ donation process subject to influence of family members

Published: Friday, July 31 2015 7:49 a.m. MDT

Pictured are Gerri, whose son Sebastian died in a car accident, and Carol, who received Sebastian’s liver. (Courtesy of Intermountain Donor Services) Pictured are Gerri, whose son Sebastian died in a car accident, and Carol, who received Sebastian’s liver. (Courtesy of Intermountain Donor Services)

Mary Pitman and her husband had very different views regarding organ donation. She insisted that they discuss the topic so they would be able to respect the other's wishes when the time came.

When he did die, she knew exactly what he wanted.

"I was so grateful that I had the conversation with my husband," she said. "We were so completely opposite on it, but we were able to honor each other's very strong feelings."

There are many types of "talks" routinely suggested, ranging from sex to drug use, but Pitman suggests this talk is just as important and is something all families need to have.

"It's not just an end-of-life decision. You never know when someone is going to have a car accident," Pitman said. "You need to have that conversation today."

More people are feeling comfortable with organ donation as success stories continue to circulate in the media. (Courtesy of Intermountain Donor Services) More people are feeling comfortable with organ donation as success stories continue to circulate in the media. (Courtesy of Intermountain Donor Services)

Even if a patient is registered as a donor on his or her driver's license, the family can still play a role in the organ donation process and sometimes succeed in vetoing the donation entirely, Pitman said, based on her experience of 31 years as a nurse.

It is critical for family members to discuss their wishes regarding donation as soon as possible, said Anne Paschke, media relations specialist for the United Network for Organ Sharing. Discussing wishes now can prevent future complications down the road when emotions take over in the hospital room, experts say, and can ensure the organ donation process — which can save multiple lives — continues unimpeded.

"Family members are generally very supportive if they know what you wanted," Paschke said. "It's much harder if they have to make that decision for you."

Role of OPOs

Lisa (right) is the mother of an organ donor with Intermountain Donor Services. After her son Adam died, his liver was donated to Steve (left). Organ procurement organizations play an important role in helping families through the donation process. (Courtesy of Intermountain Donor Services) Lisa (right) is the mother of an organ donor with Intermountain Donor Services. After her son Adam died, his liver was donated to Steve (left). Organ procurement organizations play an important role in helping families through the donation process. (Courtesy of Intermountain Donor Services)

The recovery of organs is typically handled by an organ procurement organization, of which there are 58 in the country to serve particular geographic regions. The Washington Regional Transplant Community serves the Washington, D.C., metro area, for example, and Intermountain Donor Services covers the state of Utah.

These organizations provide after-care services to family members of deceased donors in their programs, said John Ogden, media representative for WRTC. He said WRTC offers services such as a memorial quilt project, donor family gatherings and grief support groups.

OPOs are the primary organizations responsible for advocating awareness about organ and tissue donations in their respective service areas, Ogden said via email. They also are responsible for encouraging individuals to register as donors, he said, which is something more people are doing around the country.

"There is a cultural shift happening locally and nationally," said Alex McDonald, director of public relations for Intermountain Donor Services. "People are recognizing that it is the right thing to do. Fifteen years ago, people would say, 'Why would I do that?' Now they are saying, 'Why wouldn't I?’ ”

The shift can be attributed to the increased awareness of donations, in part through social media outlets like Facebook, as well as the increased success rates among patients, McDonald said.

"Today it is not unusual for people to live 25 years or more with a heart transplant," he said. "More people are seeing the success of transplantation."

Calm within the storm

A major facet of the donation process is simply helping family members remain calm and think coherently after the death of their loved one, McDonald said.

"The family needs a chance to absorb the information and (the fact) that their loved one isn't going to survive," he said. "They need people to help them talk about their options, and the vast majority of times the families do come around."

This was the case for Hedy Rossmeissl, whose husband, Paul, died in 2006 from a bicycle accident at the age of 54. She said members of an organ procurement organization helped her and her daughter through the difficult process.

"They were very helpful in telling us what that was all about and how things would work," Rossmeissl said. "They were great at guiding us through what was going to happen."

She said they made it clear that Paul was a registered donor and that they had a legal right to transplant his organs, all the while remaining respectful.

"They explained that Paul was a very good candidate," she said. "I felt that's what he would have wanted so I was supportive of the donation."

It is important that the family is well aware of the wishes of the loved one and that they fully understand what it means to be a donor, Pitman said.

"There is a lot of misunderstanding on the part of surviving family members," she said. "In that moment people are so stressed that I don't think they often hear what's being said and they don't really grasp the full concept of it."

Often, if family members are upset or contradicting the wishes of their loved one it just takes professionals to help smooth things over, McDonald said.

"We tell the families that there actually is a fair amount of time to decide," he said. "This is not a decision that has to be made in 10 minutes."

Some family members carry the misconception that if their loved one is an organ donor, then he or she will incur costs and not receive proper medical care, which is not the case, Pitman said.

Legality and morality

McDonald said in Utah that signing to be a donor through a driver's license application or other means is considered to be legally binding and that his organization will honor the wishes of the deceased.

The revised uniform Anatomical Gift Act of the Utah health codes states that "in the absence of an express, contrary indication by the donor, a person other than the donor is barred from making, amending or revoking an anatomical gift of a donor's body or part."

Pitman's time as a nurse, mostly in the ER, gave her the chance to see firsthand something else taking place. Family members would succeed in stopping the organ donation process, even if their loved one was a designated donor, she said.

"Hospitals will generally go with what the surviving family members want, because they are the ones who can sue," Pitman said.

There is also a moral aspect to the issue, she said.

"Everybody has the right to be an organ donor and also to not be one," she said. "But it's that person's decision. It should never be the surviving family members. They should honor and respect what their loved one wanted. To me, dishonoring the wishes of your family member is the ultimate in selfishness."

Taking the proper steps both before and after the death of a loved one can make the process rewarding and help bring about something positive, Pitman said.

"Organ donation is an option to make something good come out of something tragic," she said. "A lot of people will take comfort in that."

There was indeed some comfort for Rossmeissl, as she knew her husband was responsible for saving multiple lives.

"Three people received new life because of his organs," she said. "I think he would have been happy to see that other people ended up with a better life because of him."

Copyright 2015, Deseret News Publishing Company