In what has to be the most wrenching time for a family – watching a loved one whose death is imminent – a crucial decision often has to be made.
Should the loved one’s organs be donated?
The people who approach the families to ask the question have a compelling offer: life for someone else.
We recently spoke with Howard M. Nathan, CEO of the Gift of Life Donor Program, the federally designated, nonprofit organ and tissue transplant network for eastern Pennsylvania, South Jersey and Delaware.
Founded in 1974, it is the oldest and largest of 58 such programs in the nation. The programs have been set up for one reason: to recover organs and tissue for transplantation into patients who need them.
Earlier this month, officials announced that this region’s program leads the nation for the tenth consecutive year, with 1,546 organs transplanted from 565 people.
Nathan has been with Gift of Life since 1978, and his first job was to approach families to ask that pivotal question.
Why is organ donation so important?
One organ donor can potentially save eight lives. By organs, we mean the kidneys, heart, liver, lungs, pancreas and intestines. And then there are tissues — corneas, bone for orthopedic surgery, heart valves. Skin is used for burn victims and reconstructive surgery. One tissue donor can change the lives of 75 to 100 people.
Last year in the U.S., 33,000 organs were transplanted. Almost two million tissue transplants were used in life-enhancing surgeries. All that comes from donors.
As for the need, 116,000 people nationwide are waiting for an organ transplant. Someone is being added to the list every 10 minutes. Unfortunately, about 7,000 people died last year, waiting.
In our region, we’re going to perform more than 1,500 transplants this year. But 5,300 people are waiting for a transplant.
Why aren’t there more donors?
We have agreements with 130 hospitals in this region. They are required by federal law to notify us of every person who is at or near the time of death. This began in Pennsylvania in 1994. We were a precedent-setter. Because an increase in donors went up 43 percent in three years, it then became a federal law.
The reason there aren’t more organ donors is that only people who are declared as brain dead by doctors in the hospital can be donors. Often, the donor will be someone who has had a head injury – from a car accident, a gunshot, an aneurysm – and their heart stops. They are resuscitated, but their brain has been without oxygen for too long. This represents only 1 percent to 2 percent of people who die, less than 15,000 people nationwide. In this region, it’s less than 1,000.
It’s not because there’s an unwillingness. It’s because of the medical suitability. Once your heart stops, your organs can’t be donated.
But you can donate tissues up to 24 hours after the heart stops. This year in the U.S., more than 50,000 people will donate their corneas, bone, skin and heart valves.
For the most part, as long as you don’t have metastatic cancer, for instance, you can be a donor. That’s why we encourage anyone, no matter their age, to register to be a donor. Our oldest donor in this region was 84. In other regions, people are up in their 90s. Unfortunately, on the other end, newborn babies have been donors to other babies.
How do you approach the families? What can you possibly say?
When a patient goes to the hospital, the only priority for the doctors and nurses is to save that patient’s life — I want to emphasize that – but when someone has a devastating brain injury, they call our team. We have more than 50 transplant coordinators on call. These are former nurses or paramedics. They are highly skilled and trained to be able to work not only medically to determine the suitability of the organs of a potential donor, but also to approach a family who has learned from the hospital medical team that their loved one is brain dead.
In surveys, 95 percent of people say they are aware of organ donation and are supportive of it. What I keep remembering is one thing: When I approach a family, I’m giving them an opportunity to change their situation by giving other people a second chance at life.
By the time we get called, we can’t change the outcome for that patient. That patient is brain dead. Our job is to try to turn that tragedy into something positive for that family and give them an opportunity to save someone else’s life. Our job is to sensitively, and in a very caring way, talk about their loved one and what that loved one wanted in their lifetime. If they have designated on their driver’s license that they want to be an organ donor – 142 million, or 52 percent of people in the nation, have done so — well, that’s a law. That doesn’t change our attitude toward the family. But rather than ask permission, we’ll inform the family that their loved one is a donor.
When we approach families whose loved one hasn’t designated it on their license, about two out of three families say yes. We’ve surveyed families who didn’t donate. Six months later, about half of those regret it. If you think about it, at this moment in time, this decision is the only thing the family has control of. For everything else, they’ve lost control.
What happens next?
Once they say yes, we try to find a match through a national list, called United Network for Organ Sharing. We try to match local patients first, so it’s neighbor helping neighbor. Generally, the patient who is the sickest — who has been waiting the longest — is the one who gets priority.
There are different medical criteria for each organ. Our staff contacts the surgeon who is responsible for that patient to see if the surgeon is interested in that particular organ. Several surgical teams from the transplant centers then travel to the hospital where the donor is to recover the donor’s organs. There might be a lung team, a heart team, a kidney team. The organs have different preservation times outside the body. For a heart, we only have four to six hours to get it into the transplant recipient. For the kidney, we have about 24 hours. The liver, about 12 hours. For the lungs, pancreas and intestine, about six to eight hours. Gift of Life coordinates all that.
In about seven to 10 days, we follow up with the family of the donor who gave the gift of life to let them know the outcomes of the transplants. We also have a Family Support Services team that contacts the donor family about a month later to make sure the family is doing OK. If needed, we provide counseling to these families for more than a year. Many families say it was one of the best decisions in their lives, to know that something good came out of their loss.
Are the identities ever disclosed?
We do not give names or locations. We protect the privacy of both the donor and the recipient. We only tell them that the heart was transplanted into a person in their 50s, or something like that. Now, with social media, we are concerned that donor families and recipients will try to prematurely contact each other, which may violate their privacy.
Donor families and recipients can write each other anonymously. We get 1,200 to 1,300 letters a year — they are absolutely beautiful. Eventually, some people say they want to meet. If both parties agree, after more than a year of correspondence between the donor family and the recipient, our Family Support Services team steps in. Every year, we have a handful that meet.
The message is that transplants work. Right now, 93 percent of the people who get a kidney from a deceased donor have that kidney one year later. Rates for the liver and heart are about the same. The success rates have tremendously increased, not only because of surgical expertise, but also because the medications that prevent rejection have improved.
If I have to pick a story, it’s hard. There are so many. I just got an email today. This little boy, his mom always says that he was born on Valentine’s Day with a broken heart. Seven months later, he got a heart transplant from another baby. He’s now 21 and a junior in college. That gives me chills, to think about the family that said yes to donation to save his life. And he’s now healthy and pursuing a career.
For more information or to register, go to donors1.org.