America's Need for Transplanted Organs Exceeds Donations
Cover Story -- July 2003
By Ken Ortolon
Frank Rocha was living the American Dream. The registered x-ray technician had successfully launched his own x-ray equipment sales and service business in Houston in 1990. He was happily married and led an active lifestyle, enjoying golf, travel, and salsa music, despite having suffered from diabetes since 1975.
But when he went to his doctor in 1994 for the results of routine tests, Mr. Rocha heard three statements that he says will "echo in my mind forever."
"You are in 70-percent renal failure," the doctor said. "You're going to have to start dialysis. You're going to need a kidney transplant."
"It was like one, two, three strikes, you're out, just like that," said Mr. Rocha, now 54. "At that point, we were just scared to death. What you fear most is what you don't understand. My life just came to a standstill not knowing what I was going to be looking forward to."
But Mr. Rocha was lucky. In September 1996, after only nine months of dialysis and just one year on the transplant waiting list, he got his new kidney, thanks to the family of a 28-year-old foreign tourist who died in a traffic accident while visiting America.
Today, Mr. Rocha's health is excellent. "My diabetes is in excellent control. I'm back working full-time here at my business. And we enjoy a perfectly normal life."
But not everyone who needs an organ transplant will be as lucky. Despite decades of public education campaigns to encourage Americans to sign organ donor cards and to express their wishes about organ donation to their families, the number of donors has remained relatively flat in recent years. Texas organ procurement organizations (OPOs) report some improvement in organ donations, but say the numbers still aren't where they need to be.
Meanwhile, the number of those needing transplants continues to rise dramatically. According to the United Network for Organ Sharing (UNOS), 81,984 Americans, including nearly 5,600 Texans, were on the national transplant waiting list in early June, an increase of nearly 25,000 patients since 1998. And, an average of 17 people die every day waiting for an organ.
Now, a variety of national, state, and local initiatives look beyond public education and target their efforts directly at the place where organ donors are most likely to be found -- the nation's major trauma centers.
Supply and Demand
Organ donation and transplant advocates say public education campaigns and traditional OPO strategies for convincing families to donate their dying loved ones' organs simply are not keeping up with demand.
"The overriding thing that we have to understand is we continue to lose the battle," said former Texas Medical Association President Phil H. Berry Jr., MD, a liver transplant recipient and the driving force behind TMA's Live & Then Give organ donor awareness campaign in the late 1990s. "We are getting further and further behind and it's not because there are not enough organs out there."
The problem is that families of only about half of the potential donors agree to donate. Pam Silvestri, director of public affairs for the Southwest Transplant Alliance (STA), which serves Dallas and 13 other metropolitan areas in Texas, says national cadaveric donations are rising by only single digits, while the number of patients waiting for transplants grows by double digits.
According to data from UNOS and the Texas Organ Sharing Alliance (TOSA), the OPO for San Antonio, Austin, and South Texas, the national waiting list grew from 56,716 in 1998 to 79,446 in 2002. During the same period, the number of deceased donors only grew from 5,794 to 6,182. The waiting list has grown by nearly another 2,000 patients since Jan. 1.
"We can't just continue eking out small little increases in donations," added Teresa Shafer, executive vice president and chief operating officer for LifeGift Organ Donation Center , an OPO that serves 109 Texas counties including the Houston, Fort Worth, and Lubbock metropolitan areas. "We need a big change. So the challenge in the country is really how do we get more than 50 percent of families to say yes?"
Donations from living organ donors actually have risen faster than cadaveric donations. In 2002, there were more than 6,200 living donors, which for the first time was higher than cadaveric donations, says Laurie Reece, executive director of the Texas Transplantation Society . Living donors can give one of their kidneys, a lobe of their liver, part of their pancreas, and even a lobe of one lung.
But even with the living donors, donations are lagging far behind the need.
Aiming for 75 Percent
To push cadaveric donations beyond the 50-percent mark, organ transplant advocates have begun several new initiatives, with the U.S. Department of Health and Human Services (HHS) leading the way. Soon after taking office in 2001, HHS Secretary Tommy Thompson launched the Gift of Life campaign. It included working with the American Bar Association to create a uniform organ donor card that would be legal in all 50 states; developing a model curriculum on organ donation that could be used in driver education courses or in high school English or social studies classes; and creating a Gift of Life congressional medal to be given to families of organ donors. Legislation to authorize the medal is still pending.
HHS also recruited more than 7,000 businesses for the Workplace Partnerships for Life program, through which employees encourage colleagues to donate organs, bone marrow, tissue, and blood. And, Secretary Thompson convened a national conference on making various state and national organ donation registries -- most run by state motor vehicle departments -- more effective.
At a National Donate Life Month celebration at UNOS headquarters in Richmond, Va., in April, Secretary Thompson unveiled a sixth element to the campaign that will take a direct and aggressive approach to increasing organ donations in the nation's largest hospitals.
Working with the Institute for Healthcare Improvement, HHS is collaborating with OPOs, transplant hospitals, and others to identify best practices in organ donation and disseminate them throughout the country. The goal is to boost donation rates at the nation's 200 largest hospitals from a current average of 46 percent to 75 percent by April 2004.
"We've accomplished a great deal as far as notifying and informing people about organ donation since I became secretary of health and human services," Secretary Thompson said. "But the problem is we haven't really increased the number of organs. We've got to do more."
Where the Action Is
In April and May, HHS officials visited six OPOs and numerous hospitals with high donation rates to identify the reasons for their success. HHS officials were particularly interested in LifeGift's in-house organ donation coordinator program.
In 1996, LifeGift decided to try a new approach and put its organ donation representatives right where the action is -- inside the Level 1 trauma centers in its region. With the cooperation of hospital officials, LifeGift set up an office inside Ben Taub Hospital in Houston. Three years ago, a second office was established at Memorial Hermann Hospital, across the street from Ben Taub in the Texas Medical Center.
Ms. Shafer says the idea is to build solid relationships between hospital staff and the LifeGift representatives to make sure potential donors are not overlooked. Traditionally, OPOs waited for hospitals to inform them of a potential donor. While LifeGift representatives could be at just about any hospital in their service area within an hour, they still were viewed as "outsiders" by the hospital staff, Ms. Shafer says.
"There are all sorts of dynamics that go on when you're an outsider going into a place," she said. "So now we have an office in the hospitals and we have staff there. They quickly become part of the hospital staff. They're on the inside looking out, not the outside looking in."
Shawnte Williams, RN, is one of LifeGift's in-house coordinators at Memorial Hermann. On a typical morning, she makes the rounds of the emergency room and various intensive care units (ICUs) throughout the hospital, checking for patients who might be potential organ donors. Generally, donors are patients who have a serious head injury and a Glasgow Coma Scale rating of 4 or less.
As she moves through the hospital, Ms. Williams stops to chat with the medical and nursing staffs, exchanging pleasant small talk and discussing patients' conditions. To the staff, she is simply part of the hospital team.
"When we're making rounds, they see us every day," she said. "So when we come around, they basically know who we are and why we're there."
Once a potential donor is identified, Ms. Williams and the other transplant coordinators follow the patient's condition to determine if he or she is medically suitable to be a donor and if brain death is approaching. If so, the coordinators begin interacting with the family.
But donation is never brought up until brain death has been declared, Ms. Williams says. Instead, she tries to be an advocate for the family, explaining medical information that might be confusing, helping to arrange social services or housing for families arriving from out of town, and providing other support as needed.
"It's never about donation when I first meet a family," Ms. Williams said. "The biggest thing for us is to get in there and establish a rapport with the family early."
Once the patient is declared brain dead, the coordinators assess how well the family is coping with its loss. Once the family has accepted it and seems ready to focus on issues such as funeral arrangements, the time is right to bring up donation, Ms. Williams says. That may take several hours.
The Gentle Touch
On May 1, 2002, Lisa Curry, RN, lost her 16-year-old son, Adam, in a car accident. Ms. Williams was there to assist the Curry family and eventually asked them about organ donation. Ms. Curry says she initially saw Ms. Williams as a "concerned hospital employee" who was there to lend support. After brain death was declared, they discussed donation.
"I don't know how you would expect someone to approach you with that question, but Shawnte had a very calming demeanor about her," Ms. Curry said.
The Curry family had previously discussed organ donation and did not hesitate to donate Adam's organs and tissues, which eventually helped nearly 60 other patients.
But not every family agrees to donate. That, Ms. Williams says, is a personal decision that the coordinators understand. Regardless of a family's decision, the coordinators continue to provide support until the family's tragedy is over. "A lot of times we're there until they turn off the breathing machine and the patient's heart actually stops," she said. "We're there to support that family until they walk out the door."
One morning in early May, Ms. Williams was following a patient who suffered a brain hemorrhage and massive bleeding. While his Glasgow Coma Score was below 4, she said he could linger in a vegetative state indefinitely.
On the previous night, however, a patient in Memorial Hermann's neurology ICU was declared brain dead and his family agreed to donate his organs. By the next morning, one of his kidneys and his pancreas already were being transplanted in another patient at Memorial Hermann. Two other patients elsewhere received the other kidney and his liver. A chronic heart ailment made his heart and lungs unsuitable for transplant.
As Ms. Williams made her rounds the morning after the organs were recovered, the ICU staff seemed ecstatic that something good had come from the man's death.
"It's very important for us to do the best we can for the patients," said Janine Mazabob, director of neuroscience services at Memorial Hermann. "But when you know you're not going to be able to save a patient, you have to have a win. You can't deal with the type of intensity that we deal with and not get something good out of it. Donation does that."
Ms. Mazabob says the nurses and physicians in her unit look at Ms. Williams and the other LifeGift coordinators as part of their team, not someone hovering, waiting for patients to die.
Plugging the Cracks
Since the in-house coordinator program was implemented, far fewer potential donors at Memorial Hermann and Ben Taub are being missed, Ms. Williams says. In fact, she says the referral rate for Ben Taub was 100 percent for February and March, while Memorial Hermann had a rate of 98 percent for those two months.
And the percentage of families who agree to organ donations at both hospitals is substantially higher than the national average of roughly 50 percent. Between Oct. 1, 2001, and Sept. 30, 2002, Memorial Hermann actually recovered organs from 73 percent of potential donors while Ben Taub recovered organs in 68 percent of cases. Memorial Hermann has been the top donor hospital in the nation two of the past three years. And, LifeGift officials are particularly proud of the success at Ben Taub. That facility's patient population is largely African-American and Hispanic, two groups that traditionally donate in much lower numbers than Anglos do.
Based on the success of the in-house coordinator program in the two Texas Medical Center hospitals, LifeGift has implemented the same model at several other hospitals in Houston, Amarillo, Lubbock, and Fort Worth. And, in 1999, LifeGift received a $1 million federal grant to replicate the program in other parts of the country. A three-year pilot project involving hospitals in New York, Los Angeles, and Seattle increased the number of donated organs by 26 percent, Ms. Shafer says.
Fresh from that success, LifeGift is refocusing its resources to rely less on public education and concentrate more of its efforts on what it calls its "core hospitals."
Catherine Burch Graham, LifeGift's director of communications, says 90 percent of its donated organs came from only 20 of the approximately 200 hospitals in its service region in the past seven years. So LifeGift is redirecting its money and resources toward maximizing organ donations in those hospitals.
Meanwhile, Texas' other two OPOs also are employing innovative approaches to organ donation and reporting successes. Ms. Silvestri of the STA says 2003 has been "an incredible year" for her organization. "Donations have been way up," she said.
STA employs a continuous quality improvement program to track referral, consent, and conversion rates in each of its hospitals, and to share the data with hospital leadership. The information is used by STA to identify breakdowns in the donation process and to work with each hospital to make improvements.
STA also uses bilingual family service specialists with grief and counseling backgrounds, rather than clinical backgrounds, to work with potential donor families. These specialists serve much the same role as LifeGift's in-house coordinators, providing support for families before their loved ones are declared brain dead. Ms. Silvestri says the family service specialists achieve a 78-percent success rate in getting consent for donation.
That's despite an incident earlier this year at Duke University Medical Center in which a teenage girl died after receiving a new heart and lungs that did not match her blood type. Ms. Silvestri says OPOs across the country feared that might have a chilling effect on donations, but so far that has not been the case.
"I've asked our staff when they're in the trenches talking to families if anyone is saying anything negative about that, and they're not hearing it," she said. "It hasn't seemed to have affected donations in a bad way."
Ms. Shafer of LifeGift also says she's heard no reports from other OPOs that the North Carolina case has impacted the number of donations.
TOSA spokesperson Tony Ronquillo says his organization has had six consecutive record-breaking years for organ donation, with the biggest success occurring in the Hispanic community in South Texas. The organization attributes that success to an aggressive professional education program and increased training for local hospital staff on how to identify potential donors and what to do once they have identified them. As a result, the hospital began referring more patients to TOSA.
They also implemented a public awareness campaign in the Rio Grande Valley. "We created donor advisory committees in McAllen, Brownsville, and Harlingen made up of prominent local citizens and asked for their help in increasing awareness about the drastic shortage of donors in the Valley," Mr. Ronquillo said.
Overcoming cultural barriers to donation by African-Americans and Hispanics is important, particularly in kidney transplantation, where most transplant programs try to match certain types of antigens as well as blood type, OPO officials say. Those antigens are most likely to match up between people of the same ethnicity. That's important because the majority of people waiting for a kidney are minorities.
"We have in the last several years worked very hard on the Rio Grande Valley," Mr. Ronquillo said. "Five years ago, we were averaging two donors a year out of the Rio Grande Valley, an area that has a population of almost 1 million people. Last year, we had 22 donors from the Rio Grande Valley."
TOSA is now making a similar push in Laredo, another heavily Hispanic border community.
The Big Stick
Despite these new initiatives and the successes in Texas, Dr. Berry says too many potential donors are going unidentified and their families are never asked to donate their organs. He has come up with a potential solution that earned the backing of TMA's House of Delegates in April despite opposition from patient safety advocates.
A resolution sponsored by the Dallas County Medical Society and adopted by the House of Delegates calls on the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) to include failure to identify and/or refer potential organ and tissue donors in a timely manner in its definition of "elements of performance" for hospitals. The resolution originally sought to make such failures a "serious reportable event in health care" or "sentinel event" that could lead to the loss of a hospital's accreditation to care for Medicare patients.
"Organs are dropping through the cracks in the hospitals," Dr. Berry said. "The only thing that hospitals fear is losing their accreditation for Medicare payments. What we want to do is encourage the joint commission to see if hospitals are in fact referring patients to OPOs. If they're not, then they need to be brought into compliance or perhaps lose their Medicare accreditation." (See " Sharing a Miracle.")
Josie R. Williams, MD, a member of the JCAHO Ambulatory Technical Advisory Committee, supports Dr. Berry's goal but says he has chosen the wrong forum for achieving it.
"In our present environment, sentinel event reporting is still seen by a majority of our constituents as punitive reporting," she said. "We are struggling mightily to get health care -- and physicians, in particular -- to understand the complex systemic environmental and medical issues related to patient safety in a nonpunitive environment so we can actually improve health care safety."
Dr. Williams says Dr. Berry's approach could have "a very chilling effect" on the reporting of a sentinel event required for an accurate reporting system, "which we have to have if we're going to learn what we need to know about patient safety."
The TMA Delegation to the American Medical Association was set to take Dr. Berry's resolution to the AMA House of Delegates in June with the goal of getting AMA to present the proposal to JCAHO.
Even before that could happen, JCAHO was acting on its own to improve organ donation. In June, it convened a meeting of organ transplant advocates to begin looking at ways to improve performance in organ recovery. Dr. Berry was invited to participate in that meeting and hoped to present his proposal.
"I think there are enough organs out there, we're just losing them," he said . "If we got all the organs that were available, we'd have more organs than needed to eliminate the waiting list."
Ken Ortolon can be reached at (880) 880-1300, ext. 1392, or (512) 370-1392; or by email at Ken Ortolon.
Sharing a Miracle
By Phil H. Berry Jr., MD
On Oct. 27, 1986, a miraculous thing occurred. I was given the most precious gift imaginable: the gift of life. I had contracted hepatitis B three years prior and gradually developed hepatic failure from cirrhosis. Not knowing if I would get a second chance, as I languished on the transplant waiting list, I remember that time as the loneliest, most desperate time of my life. My surgery was successful after the family of a 30-year-old housewife from Brazoria donated her liver following a fatal bleeding aneurysm. And I have been able to experience the fullest life you can imagine since that time.
I can't believe all the wonderful things I've experienced, having been given my second chance by a lovely woman I never got to meet. I have met her family, however, and I know what she must have been like because of what they've shared with me. What they gave me in my second chance was an additional 17 years of marriage, walking three daughters down the aisle, gaining three wonderful sons-in-law, and holding six incredible grandkids. Meeting my donor family was a highlight experience for me, and serving TMA as its president in 1997-98 topped it all.
But what about the more than 81,000 people on the list now? And what of the 6,300 people who die each year, waiting for an organ that never comes? I feel very strongly that each person on that list should have the same opportunity I had, the same exhilaration I feel now, as I am alive, well, and functional. We have the skills, the techniques, and the talent to give everyone on the waiting list the second chance I got. What we don't have are the organs.
Are there enough organs? Almost certainly so. Each year, almost 15,000 patients suffer fatal head injuries: strokes, car wrecks, bleeding aneurysms. But on average, only 5,200 to 5,400 have been donors over the last few years. We are accessing only about a third of the donor pool in the United States, and it's imperative that we look at every possible way we can increase that number.
In a study published in 1993 in Transplantation , several factors were found to make a big difference in whether families consent to donate a loved one's organs. If a transplant coordinator from an organ procurement organization (OPO) made the request for organ donation, the success rate was 78 percent. Physicians were successful 61 percent of the time, and combinations of nurses, chaplains, and others were less successful. Of added importance was the timing of the request. If the request was made immediately after notification of death (as opposed to before or simultaneously with the notification), consent rates were vastly improved (the so-called "decoupling" of death from donation). This was true no matter who made the request. With the present rule of the hospital notifying the OPO about patients with impending death, these factors could be maximized to produce a higher degree of consent.
Some hospitals do a very good job of referral, but many don't. Organs continue to slip through the cracks. People continue to die . . . needlessly. Many hospitals act very independently, not wanting to be interfered with as they run their operations. And they are not penalized for not making the proper death referrals to OPOs. However, if the specter of losing their accreditation loomed on the horizon, I feel they would be much more willing to comply with the referral process, thereby increasing organ donation nationally by as much as 20 percent, according to some professionals.
Have you stopped for a moment to wonder what would happen if suddenly youneeded a transplant to continue to live? I hadn't, but I know now what that feels like. Suppose you knew that a lifesaving procedure was available, but the essential piece of the puzzle -- an organ -- was not there. We must, as physicians, develop a passion to see that this circumstance is improved, that an organ will be there for you and for your family when needed. We must continue to push organ donation and support every effort to make more organs available. There is no more grateful person in this world than me. Let's make this experience more possible for others. Let's "Live and Then Give."
Talking to Patients About Organ Donation
When brain death occurs, experience shows that more families will donate a loved one's organs if they are asked by trained organ procurement representatives rather than physicians or hospital nursing staff. But physicians can be a powerful, persuasive force in educating the public, especially their own patients, about the importance of signing a donor card and talking with family members about their decision.
Here are some tips on how to talk to patients about becoming an organ donor:
To obtain more information about organ donation, including organ donor cards, contact:
For information about the Web sites of these and other transplant-related organizations, see MedBytes.