How Can Texas Physicians Help Improve the State's Organ Donation System?
Public Health Feature — August 2017
Tex Med. 2017;113(7):47-54.
By Sean Price
In 1999, Lemuel Bradshaw woke up from his heart transplant operation feeling like a new man.
"I'd been sick for a year or year-and-a-half, and I'd gotten to the point where I couldn't walk 50 feet without having to stop and rest," said the 47-year-old Austinite. "When I woke up from the anesthesia, I immediately felt better, and that's with tubes in every place a man can have tubes, plus a couple places you didn't know that you could."
Mr. Bradshaw says the years that followed were just as good. Less than a year ago, he was able to exercise six times a week. In the 2014 Transplant Games in Houston, he competed in the 500-meter swim.
"That's what a transplant does for people," he said. "It changes their lives."
But the heart that's kept Mr. Bradshaw going strong for 17 years is turning on him. Like all transplant recipients, he has to take immunosuppressive drugs to keep his body from rejecting the donated organ. Over time, these drugs have started damaging the heart, causing blood vessels to harden. The upshot is that Mr. Bradshaw needs another heart.
"I can already feel diminished capacity, certainly compared to where I was a year ago," Mr. Bradshaw said. "In time, this will lead to catastrophic heart failure, and that's why I'm back on the transplant list."
Mr. Bradshaw is not alone. As of last month, 117,997 Americans were on waiting lists for organs such as hearts, livers, lungs, and kidneys.
Kevin Myer is president and chief executive officer of LifeGift, one of the three Texas organ procurement organizations (OPOs) that help facilitate organ donations. He says looking at the size of the waiting list masks the size of the overall need for organs.
"That's just a small fraction of the people who are going to need organ transplants eventually," he said. "There are many, many more people out there who are sick, but they just haven't gotten to the list yet."
Organ transplants are acknowledged to be the best ― often the only ― treatment for organ failure. They're also popular with the public, with 95 percent of Americans approving of organ donation and about 48 percent signing up to become donors, according to the U.S. Department of Health and Human Services. Donate Life Texas, Texas' donor registry, says enrollment is now increasing by about 100,000 donors per month.
Even so, the very success of organ donation has created a seemingly never-ending discrepancy between demand and supply. The World Health Organization reports that in 2014 the solid organ transplants done worldwide met only 10 percent of global need. To combat the chronic supply problem, physicians and organ donation organizations have looked for ways to make donation more efficient ― to allow the possible number of organs to go further, including the promotion of technological advances.
But for now the best way to improve organ donation is to get more people to donate. Organ donation officials say better education is needed, especially recommendations from physicians to their patients.
Many Texas physicians in the transplant field would like to improve the state's donation numbers by adopting the successful "presumed consent" or "opt-out" efforts that have been pioneered in Europe. That has sparked an intense debate between physicians and organ donor organizations. Both sides are dogged by the statistic that 22 Americans on organ donor lists die each day waiting for a transplant, and many others are removed because an organ donation won't help them anymore.
"In Texas, we have about two people each day removed from the waitlist because they died, and two people who are removed because they became too sick waiting for an organ," said Rick Snyder, MD, a Dallas interventional and transplant cardiologist who also serves on the TMA Board of Trustees. "So, on average, about 1,400 to 1,500 people [in Texas] are removed from the list each year in our state because they die or continue to get too sick to receive an organ. With these types of numbers, I don't see how anyone can say we have a successful system and be satisfied with the status quo."
When the first organ transplantation ― a kidney from a live donor ― took place in 1954, it left medicine with two big challenges. The first was to expand transplantation to other organs and tissues. Transplantable organs now include heart, liver, kidneys, lungs, pancreas, and intestines. Transplantable tissues include skin, bone, heart valves, veins, and corneas. In 2010, the first successful face transplants was conducted in France. (See "Most Common Types of Transplants.")
The second challenge was to provide more of the lifesaving organs and tissues to people in need. As is often the case, it took many years for the legal and ethical framework to catch up with the medical advances. National laws in the 1960s and 1970s made some headway. But today's infrastructure for organ donation finally took shape when the National Organ Transplant Act passed in 1984.
The law established a nationwide computerized registry operated by the nonprofit United Network for Organ Sharing (UNOS). It also set up nonprofit OPOs in each state to identify and obtain deceased-donor organs. Texas has three OPOs: LifeGift, the Southwest Transplant Alliance, and the Texas Organ Sharing Alliance. (See "The Geography of OPOs.") The state also has 26 transplant centers, or hospitals with established transplant programs.
When people talk about "the list" to receive organs or tissue, they're talking about the list that UNOS curates. The word "list" is misleading because there are several "lists" – one for each organ or tissue type. "List" is also misleading because each category consists of a pool of people needing the same medical treatment. Who gets plucked from that pool to receive a transplant varies based on a combination of factors, such as medical urgency, blood type, time spent waiting, proximity to the donor, and age.
Donors make up the other side of the equation. In Texas, the donor registry is overseen by Donate Life Texas, a nonprofit designated by the Texas Department of Public Safety (DPS). Hospitals are required to report any imminent deaths to their local OPO. The OPO then consults Donate Life Texas to see if that patient is a registered donor.
Suzy Miller, executive director of Donate Life Texas, says organs can come from patients who have died from cardiac death. But the most likely donors are people who have suffered brain death, usually due to brain trauma, stroke, or an accident that cut off breathing.
"In most cases, for a person to become a donor, he or she has to pass away in a hospital on a ventilator," she said. "That narrows the number of potential donors dramatically. Only 1 percent to 2 percent of deaths occur in a way that makes organ donation even an option."
Donation officials have to make the most of that tiny pool of potential donors. Unfortunately, that has not always been the case. Texas set up the Donate Life registry in 2005, but the registry got off to a slow start. The biggest issue was its cumbersome procedure for registering potential donors.
"There was a time when you had to register online and then they sent you a letter, and you filled out the letter and sent it in and then you got the donor card ― it was a very involved process," she said.
Since 2011, Donate Life Texas and the Texas Legislature have streamlined that process. Today, people can register quickly online, and most people still register while getting their driver's license. Those who register at DPS get a "hero heart" designation on their license.
Thanks to this and improved education efforts, the number of potential Texas donors has jumped dramatically. Between 2006 and 2011, only 13 percent of Texans 18 years and older registered to become organ donors. As of May, 48 percent were registered.
"The first six years of the registry, we grew very, very slowly," Ms. Miller said. "And the last six years, we've grown exponentially."
Opt-In or Opt-Out?
Texas transplant physicians naturally welcome this, but many say it's not enough. Statistics compiled by the U.S. Department of Health and Human Services highlight their concern. From 2005 to 2015, the nationwide number of transplants rose from 28,118 to 30,973, or about 10 percent. Meanwhile, the number of people on waiting lists jumped from 90,526 to 122,071, or about 35 percent.
"The number of patients waiting for transplants is drastically outgrowing the number of transplants," says Evan Pivalizza, MD, director of liver transplant anesthesia at The University of Texas Health Science Center at Houston and a member of the TMA Subcommittee on Transfusion and Transplantation. "Just because we've got a transplant list and 26 organ donation centers [in Texas], that's great. But we don't have enough organs for them."
Organ donation is regulated at the state level, and every state currently has similar "opt-in" systems. That means potential donors (or in many cases, their families) have to make an active decision in favor of organ donation. Other countries ― notably Spain ― have chosen to go with an opt-out, or "presumed consent," system. Under those systems, people are free to declare that they do not want to be organ donors. But if they don't, it's assumed that they are candidates for organ donation.
Thanks in large part to this opt-out system, Spain has become the acknowledged global leader in organ donation since 1992. Spain's health ministry reported that the country in 2016 had an average of 43.4 people who donated an organ per million inhabitants, beating its own record of 36 per million in 2014. UNOS data show that the United States has a rate of 30.8 per million, while the Texas rate is slightly better at 31.2. Also, Spain's waiting lists for most organs have been shrinking, while the lists in the United States continue to grow.
Other countries, like Austria and Belgium, also have seen success with an opt-out system, and others, like France, have turned to it recently. So far, no U.S. state has followed suit, but this year, Rep. Jason Villalba (R-Dallas) proposed House Bill 1938, which would have created an opt-out system in Texas.
The bill drew support from groups such as the Texas Chapter of the American College of Cardiology and the Texas Hospital Association. It was opposed by many powerful groups, like Empower Texans and Texas Right to Life. In the medical community, it pitted many Texas transplant physicians against groups like Donate Life Texas and the OPOs.
"The physicians and the transplant organizations are totally divided on this," Dr. Pivalizza said.
TMA's policy calls for supporting ways to improve organ and tissue donation rates, including working with stakeholders to "inform and improve awareness and efforts to monitor and evaluate policy models such as mandated choice or presumed consent for organ and tissue donation." Dr. Snyder testified on behalf of TMA, saying that HB 1938 was vital to improving Texas' organ donation efforts. The House Transportation Committee did not vote on the bill, and it went no further.
"If you talk with the on average 600 or 700 families each year in Texas who lost a family member because they died while on the waitlist, waiting for that miracle that never arrived, I don't think they'd agree with you that the current system worked for them," Dr. Snyder said.
Dr. Snyder says that the success of an opt-out system relies in part on "default dynamics." He cited a 2012 study by Stanford University and Cornell University that found that when the default position is not donating, people see organ donation as something "noteworthy and elective." But when the default position is to donate, then "organ donation is seen as something that one does" unless there is some extraordinary reason to avoid it.
In other words, Dr. Snyder said, "If all my neighbors are doing their duty, then I want to do my duty."
But organ donation groups fear that moving toward an opt-out system will endanger the gains Texas has made in recent years. Many of those groups include physicians. Matthias Peltz, MD, president of the nonprofit Texas Transplantation Society, said the group "represents the largest number of transplant physicians in the state and was opposed to the bill by a large majority." He said other groups, like the American Society of Transplantation and the American Society of Transplant Surgeons, also oppose the opt-out system.
Mr. Myer, the head of LifeGift, says public perception is one of the biggest reasons groups are opposed to an opt-out system. People in the European countries that use those systems also have a much more community-based view of health care than most Texans. He says that shows up in public attitudes toward state-run health care systems, which are common in Europe but viewed skeptically by many Texans.
"It's not because we're not willing to change, and it's not because we're unwilling to try new things," he said. "It's because, especially in Texas, it's a big unknown. To assume that the behaviors of the population that we serve are going to be similar to the populations of France, Belgium, and Spain ― we don't know."
The most recent U.S. public opinion data on opt-out systems comes from a 2012 survey by the U.S. Department of Health and Human Services. It found that "half of the U.S. adult population (51.1 percent) would support or strongly support a system of presumed consent in the United States. This was significantly more than the 41.9 percent who supported such a system in 2005."
Mr. Myer says what's missing are intensive qualitative and quantitative public opinion measures that can be found only in things like large-scale focus groups or scientific surveys. Mr. Myer says he fears people will feel forced to become donors, an argument one of Representative Villalba's fellow legislators used against HB 1938. Without strong public support, Mr. Myer says, opinions like this could cause a backlash against organ donation in general.
"If we got this wrong, it would cost lives," Mr. Myer said. "This bill was well-intentioned but … what if we got it wrong?"
Mr. Myer says statistical evidence shows that Texas is doing well as an opt-in state. He acknowledges that Spain leads the world when looking at donors per million inhabitants. But he says a more refined approach requires looking at "deceased donors per million." This excludes live donations (for kidneys) and shows more clearly how many people are donating upon death. According to data from the OPO Texas Organ Sharing Alliance, Texas' rate of 45 deceased donors per million not only surpasses the United States rate at 35.5, but it also beats Spain's rate at 41.6.
But Dr. Snyder says that other statistical measures show that Texas still has a lot of room for improvement.
"In terms of donor registrations, Texas at about 48 percent is underperforming when compared with the other states in the U.S., where we rank 44th," Dr. Snyder said. "If we look at presumed consent, we also underperform compared with opt-out European countries such as Austria, Portugal, and Hungary, whose effective consent rates average 98 percent to 99 percent."
Texas' organ donation system faces other challenges, many of them caused by simple ignorance. In urban areas, medical examiners often call time of death and release organs for donation in cases in which the death was violent. But in rural areas, this is left to justices of the peace (JPs). Brownsville pathologist Rudy Alvarez, MD, says some JPs don't realize that the organs of a person facing brain death begin to deteriorate quickly. If too much times elapses, they become unsuitable for transplant.
Dr. Alvarez also says many doctors are not adequately trained on the American Academy of Neurology guidelines for determining brain death.
"It's not as easy as it looks, and we've actually provided webinars and training because the actual individuals who are supposed to know ― neurologists ― were not exactly following the guidelines," he said. (See "American Academy of Neurology Guidelines for Brain Death Determination.")
While training can help doctors, fighting ignorance among the public is tougher. Ms. Miller says those who work in organ donation spend a lot of their time dispelling myths, especially the belief that physicians will deliberately withhold care from a patient in a sinister effort to obtain organs.
"People have this misconception that, 'If they know I'm an organ donor and they see that heart on my drivers' license, they aren't going to try to save my life. They're just going to let me die,'" she said. "That fear is something that is very pervasive and something we battle with on a daily basis. That is the No. 1 reason people give for not registering or withdrawing themselves from the registry." (See "Common Myths About Organ Donation.")
Dr. Pivalizza says the most productive type of education takes place between physicians and patients. Physicians can raise the visibility of organ donation through literature, science, posters, and social media. Raising the topic in a regular office visit might be awkward, but physicians can watch for opportunities to let patients know how much organ donation means.
"It's an uncomfortable conversation to have because you have to talk about death and dying," he said. "But you need to plant the seed and [get them to] think ahead."
Sean Price can be reached by phone at (800) 880-1300, ext. 1392, or (512) 370-1392; by fax at (512) 370-1629; or by email.
Meeting the Donor's Family
In 1983, Phil Berry, MD, found out that he had contracted hepatitis B. Dr. Berry is an orthopedic surgeon, and it didn't take a lot of detective work to see that he'd contracted the illness by getting stuck with something during surgery on a patient with hepatitis B. By 1986, he desperately needed a liver transplant to survive ― and he got one.
"My donor was a 30-year-old housewife from Brazoria," said Dr. Berry, who later served as TMA president during 1997–98 and led nationwide efforts to improve organ donation. "She had made the commitment to donate her organs if anything ever happened to her. She had a bleeding aneurysm, and her parents donated her organs. I got her liver, and it's been great ever since."
Dr. Berry badly wanted to meet the donor's family to express his gratitude. But transplant officials nixed the idea.
"This was in 1986, and the organ bank didn't feel it would be proper for the recipient to meet the donor's family," Dr. Berry said.
Suzy Miller, executive director for Donate Life Texas, says today's rules try to respect the privacy of both recipients and donors. She says both sides receive non-identifiable information about the other person and are given the option of making contact. If both agree, it is facilitated by an organ procurement organization (OPO) or the transplant center.
In some cases, the parties remain in contact anonymously via the OPO or transplant center. Other times, they get in contact directly. But there can be volatile emotions on both sides. In many cases, recipients feel guilt for taking someone else's organ, and donor families are often immersed in grief.
"Some people are ready to initiate communications right away, others need time, and some are never ready," Ms. Miller said.
After 10 years, Dr. Berry convinced the transplant organization to establish contact with his donor's husband. As it turned out, the man was glad to meet Dr. Berry, and he was able to meet the donor's entire family.
"Her mom put her hand over my liver, and it was such a tender moment ― just special," Dr. Berry said. "We cried and hugged each other."
Commenting on Organ Allocation Policy Proposals
Physicians who have opinions about organ allocation have a place to speak out. Twice a year, the United Network for Organ Sharing (UNOS) puts policy proposals up for public comment. "You can make a significant contribution without volunteering to serve on a committee," said Anne Paschke, spokesperson for UNOS. "You can provide feedback directly on our website. You can comment on the comments, even," she said.
Handing Out Organ Donation Materials
To get literature for your office on organ donation in Texas, email Info[at]DonateLifeTexas[dot]org.
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