Topics in Health: Lessons From The Field
Live Organ Donations
Probably every health reporter in the country has been asked at one time or another to write a story about live organ donors. Such stories have become a staple of newspaper front pages and TV newscasts. Even so, few reporters have questioned whether the obvious benefit for the recipient was worth the risk to the donor.
Some words I had heard years before at a national organ transplant conference came back to me as a representative of Mid-America Transplant Services, a regional organ procurement organization, began telling me about a plan to recruit people to donate kidneys to strangers.
I had been the only reporter in the nondescript conference room - a fly on the wall - and my jaw had dropped as I listened to several doctors worrying out loud about harming -- maybe even fatally injuring -- one of the generous people who volunteered a kidney to a family member, acquaintance or stranger. It was a very different side of live donation than typically reported.
In the transplant world, live organ donors who give to someone they don't know are called altruistic, or Good Samaritan, donors. A few years ago, as the Mid-America representative outlined plans for transplants from altruistic donors, I wondered what the actual risks were and if donors would fully understand the medical and emotional consequences. What safeguards would Mid-America put in place to protect them? Who would look after their interests?
If you haven't been asked to write a story about live organ donation in the past, you may well be asked in the future, because the national organ shortage is being exacerbated by several disease trends. The two main causes of kidney failure, diabetes and high blood pressure, are on the rise. About 500,000 Americans are now in end-stage kidney disease. Most receive dialysis. As of March 2009, 83,875 Americans were on the waiting list for kidney transplants.
In addition, millions of Americans are infected with hepatitis C, the leading cause of liver disease leading to liver transplant. Of those, 20 percent or more eventually might need new livers. More than 16,400 Americans were on the waiting list for liver transplants as of March 2009.
The root ethical issue is that live organ donors are the only patients who undergo major surgery to help someone else, an operation that poses serious risks with no possibility of medical benefit. That fact alone suggests that their stories should not be reported superficially or viewed only as soft features. Reporters should be prepared to ask hard questions.
So when I heard about the plan to recruit altruistic donors by Second Chance St. Louis, which was being advertised on the radio, I sought to write a story (possibly a series) about the program's first Good Samaritan donor. All of the parties - Mid-America Transplant Services, St. Louis University Hospital, the donor, and the recipient - agreed.
My research started months before the transplant. The Good Samaritan, Laura Giese, lived in a Kansas City suburb. Attractive and personable, she was newly married and the mother of a teenage daughter. Laura and her second husband worked five jobs between them. Money was tight, yet she drove five hours across the state countless times at her own expense to undergo donor testing and evaluation in St. Louis. Her recipient, Willie Boyd, had moved from St. Louis to Houston for a fresh start. He was struggling to get his life together, and, for him, the transplant was truly a second chance.
I met Laura and Willie in their respective cities months before the transplant. I interviewed family members and experts. I observed the surgery. I followed Laura's and Willie's recoveries.
It was an eye-opening experience. The fears I had heard voiced at the national transplant meetings I attended earlier in my career - about the possibility of medical, psychological, financial and other problems for donors - played out in textbook fashion.
Laura suffered a painful, life-threatening injury to her pancreas during the surgery. She also developed debilitating psychological problems - panic attacks and depression - during her prolonged hospital stay. Even though officials at Mid-America Transplant had promised to look out for her interests throughout the process (they acknowledged that the transplant system revolves around the needs of the recipient and she would need an advocate), the staff was missing in action once Laura was admitted to the hospital. Weeks later, when we were going to press, they still were unaware of her many complications.
Before the transplant, the hospital had assured Laura that she would not be billed, even if she suffered complications. Donors are routinely told the recipient's insurance will pay. But the bills piled up, and Laura couldn't get anyone from the hospital on the phone to straighten out the confusion. (I later learned that this is a not uncommon experience for donors. Many get stuck with medical bills. Some later have problems getting health insurance because of the donation.)
I was stunned. Usually, when a new program is launched, considerable attention is paid to "the first." But Laura received shockingly shabby treatment, despite the fact that everyone involved knew that a reporter and photographer were on hand recording it all for publication. I wrote the series, but was haunted by more questions. How often does this sort of thing happen?
I was awarded a fellowship from the Kaiser Family Foundation so I could dig deeper. The grant allowed me to devote a year to sort through documents and interview living donors, transplant surgeons, ethicists, donor family members, donor advocates, government officials and others.
When I started researching the series in 2003, live donation had been steadily climbing. In 2001, more organs were coming from living people for the first time. Between 1988 and 2004, the number of living donors rose 284 percent, while the number of deceased donors increased 75 percent. Deceased donors peaked in 2006 at 22,206. Living donors peaked in 2004 at 6,991. In 2008, more than 5,600 living people gave organs.
Many of those who donated likely came through the experience without serious problems. They saved the lives of parents, offspring, friends and strangers and went on to live their lives. Over my career, I have written many articles about those success stories. However, the goal of this project was to better understand why and how some live-donor transplants go terribly wrong I learned that Laura Giese's experience was not that unusual.
Little follow-up attention to live donors
As I got deeper into the topic, I was astonished to learn that the government regulated deceased donor transplants, but took a laissez-faire approach to living-donor transplants. Each hospital makes it own rules, which vary widely. As a Post-Dispatch colleague, John Carlton, wrote in an editorial: organ transplantation has "advanced the frontiers of medicine - and medical ethics - into terrain as wild and unpoliced as the old West."
Donors are not systematically tracked, as recipients are. Some transplant centers study their own donors, or a selection of them, for a limited time. But most do not follow them long-term, and efforts to create a national donor registry have not gotten off the ground. As a result, no one knows how many donors have died or suffered serious injuries or complications.
The lack of comprehensive data makes it impossible for donors to accurately assess the risks. My stories, which appeared in the St. Louis Post-Dispatch and on CNN,also found that there is no agreement on who is eligible to donate an organ or how to evaluate potential donors. Those approved have included children as young as 10 (some donating to adults), people who abuse drugs, people who are mentally ill, and people in their 70s. I interviewed one donor who gave away his kidney after unsuccessfully offering it on the Internet for $175,000. (Buying and selling organs is a violation of federal law.)
According to most transplant officials, three of every 10,000 kidney donors are expected to die as a result of donating. One in 10 is expected to develop complications. Those numbers are based on data from individual centers and a national survey of 171 of 234 transplant centers about donor complications over a two-year period. However, other studies have found that many centers lose track of donors within a year of transplant. Those centers cannot possibly know about all of their donors' complications.
Also, a study by United Network for Organ Sharing, the group that oversees the nation's transplant system, found that at least 177 kidney donors since 1993 later went on the transplant list themselves. The number is an underestimate, the paper's authors said, because the study only took into account those who were listed for an organ. Another study noted that data on donors who themselves needed an organ are incomplete.
Living liver donors face even greater risks - especially adults giving a piece of liver to another adult, because surgeons take the larger lobe. Estimates of complication rates range from 15 to 67 percent. The federal Advisory Committee on Organ Transplantation estimates the death rate at two in 1,000 donors. A study published in a major clinical journal calculated the risk of death to be as high as one in 100.
Some centers that perform liver transplants do few procedures, maybe one or a handful a year. Experts say surgeons need to perform these operations regularly to gain the needed experience and expertise.
The limited data on kidney donor outcomes were collected at a time when selection criteria were much stricter. In the past, donors were expected to be physically fit, in good overall health, and free from high blood pressure, diabetes, cancer, kidney disease and heart disease. To boost donation, however, some centers have accepted donors who are older, obese, or who have a health condition, such as high blood pressure, that would have ruled them out a few years ago.
Reporters should ask: Where is the proof?
Some of the donors I interviewed fell into a high-risk category and later needed a transplant themselves. Was it the transplant that harmed them? Should they have been ruled out because of family and personal histories that put them at risk for kidney failure? Those are among many unanswered questions.
Physicians swear to uphold the Hippocratic Oath to "do no harm," and reporters should hold them accountable. It is disappointing to see stories about live donation that lack a single sentence about risk. Too often it seems reporters prefer emotionally-laden terms such as "gift of life." (See our tip sheet.)
The stakes are high for doctors and hospitals. A marketing tool as well as a treatment, transplants are seen as a way to raise a hospital's profile and prestige. But in some instances, inexperienced surgeons have performed complicated transplant procedures with disastrous, sometimes fatal, results.
We are not doing our jobs if we take assurances of safety at face value. Where is the proof? That question should be our mantra.
Carole Tarrant, editor of The Roanoke Times, views the issue from a unique vantage point - as a journalist and daughter of a live donor who was severely and permanently injured as a result of her donation.
"Unfortunately, I still see too many examples where reporters don't question assumptions or dig far enough," she told me recently. "I believe it's our job as well as the medical community's to accurately convey the risks to our readers, without the fairytale sugar coating. Sure, it may be a one out of 1,000 or 1 million chance that something goes wrong. But what if it does?"
Efforts have been made recently to regulate living donation. In 2007, the federal agency in charge of deceased donor transplants - the Health Resources and Services Administration in the U.S. Department of Health and Human Services - announced that policies on living donation would have the same enforceability as those for deceased donation.
Also in 2007, the Centers for Medicare and Medicaid Services for first time issued minimum standards for transplant centers that perform living donor transplants, requiring programs to have an established protocol for medically evaluating living donors and provide independent donor advocates, among other things. Transplant programs that don't follow the rules risk losing their Medicare and Medicaid funding.
It remains to be seen how strictly the new rules will be enforced. Some critics have questioned whether they go far enough. Many transplant surgeons have bristled at regulation, viewing such attempts as intrusions into the practice of medicine and "overly prescriptive."
As transplant medicine continues to evolve, ethical, legal and social issues surrounding living donation are likely to multiply. For example, the number of paired-exchange transplants involving live donors has increased in recent years. The operations (also called domino transplants) take a group of medically incompatible donor-recipient pairs and match them with other pairs in a similar predicament. (Another type of domino involves deceased donor organs.)
Although living donors are supposed to be offered every opportunity to change their minds about donating at any time, how is that choice safeguarded when the survival of several others is dependent on their participation? It's a question worth asking about a potentially high-pressure situation.
Other social, legal and ethical issues have arisen as more recipients solicit donors on the Internet, on commercial Web sites and in other public venues.
No area of medicine is free of ethical, social and other implications; transplantation is no exception. Our readers, listeners and viewers - some of whom may be considering live donation - deserve critical coverage of the field. In fact, I'm convinced that their very lives may depend on it.
Deborah L. Shelton is a reporter at the Chicago Tribune, where she writes about urban health issues, chronic diseases and women's and children's health.