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Don't Take Your Organs To Heaven
by Margaret R. McLean
"Don't take your organs to heaven. Heaven knows we need them here."
Bumper sticker, Mission Concepción, San Antonio, Texas
Todd Krampitz's message was simple-"I Need a Liver - Please Help Save My
Life!" Plastered on two billboards along a busy Houston freeway, Todd's plea
included a toll free number and web site, which told his story. Krampitz, 32,
was hospitalized in May 2004 with sudden severe abdominal pain. The
diagnosis was liver cancer so extensive that he would never survive the
average 515 day climb to the top of the liver transplant wait list some 17,000
patients long. Seeing no other option, his family and friends skirted the
national organ donor registry pleading for a directed donation, one in which a
family would ask that their loved one's liver go directly to Krampitz. It
worked. Within a week, a family directed that their deceased relative's liver
go to Krampitz rather than to the person on the top of the list maintained by
the United Network for Organ Sharing (UNOS), which coordinates the
nation's transplants. Such directed donations to strangers are legal but raremost directed donations occur within families or between friends. Internetbrokered transplants raise ethical concerns about human need, the just
distribution of available organs, and the formation of an international cybermarket in human organs.
Organ transplants fascinate us. They are ripe with the promise of life and
drenched in the mystery of otherness. In the decades since the first organ
transplant, a kidney, on December 23, 1954, surgeons have successfully
transplanted many vital organs-kidney, liver, lungs, heart, pancreas,
intestine-and some nonvital body parts, notably hands and soon possibly
faces. Improved surgical techniques, organ preservation, and tissue
matching together with increasingly effective anti-rejection agents and
antibiotics, have produced remarkable success. In 2004, one-year patient
survival for kidney transplants was approximately 95%. For livers, it was
around 80%. After 10 years, the survival rate for both drops to around 55 to
75%-the higher survivability the result of living donor transplants. Controlling
chronic rejection continues to be difficult.
Organ transplantation is expensive. In 2003, a kidney transplant averaged
$51,000 and a liver transplant five times that. The cost of
immunosuppressive agents adds thousands of dollars per year in expenses
for the remainder of the patient's life. Medicare, Medicaid, and most
insurance pick up some, but not all, of these costs. In addition, it costs
approximately $35 billion per year to care for those patients who wait in line
with end-stage organ failure.
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The biggest challenge in transplantation is the chronic scarcity of organs.
Although a record 27,000 human organs were transplanted in the United
States in 2004, 6,200 patients died waiting for an organ that never camealmost 88,000 wait still. Despite 7,153 deceased donors and almost 7,000
living donors, organ donation has chronically failed to keep up with need.
Each day, 106 people are added to the organ waiting list, 68 people receive a
new organ, 17 people die waiting, and 27 people become organ donors,
averaging 3 usable organs each. This unyielding shortage is exacerbated by
the fact that many patients require multiple transplants, since after 10 years
or so the transplanted organs fail due chronic rejection.
Given the paucity of transplantable organs, we face two vexing questions:
How should we distribute the organs that are currently available-to the
sickest, to the one waiting longest, to the highest bidder? And, how can the
supply be increased?
The ELCA addressed this "acute shortage" in its 2004 policy resolution on The
Donation of Organs, Tissue, and Whole Blood. Here, organ donation is
considered "an act of stewardship" and "an expression of sacrificial love for a
neighbor." The statement calls on the government to prohibit coercion, to
outlaw the buying and selling of organs, and to assure "efficient, equitable
access" to organs, tissues, and blood. It calls for closing the gap between
medical need and organ availability in ways that do not involve payment.
Finally, it seeks careful deliberation and assessment of a shift in the default
position from "no one is a donor unless otherwise indicated" to "everyone is a
donor unless otherwise indicated" and of the purported promise of
xenotransplantation.
Todd Krampitz's successful media campaign raised concerns about the
bypassing of the established organ allocation system. The American Medical
Association preaches that the distribution of any scarce medical resource
should be rooted in ethically justified criteria such as likely benefit to the
patient and the extent of need-the same triage criteria used in over-taxed
military field hospitals and over-crowded emergency rooms. In November
2004, UNOS adopted a position statement opposing public solicitation of
organs from dying or deceased donors for a transplant candidate when no
familial or personal tie exists. The concern is for putting the needs of one
advertising-savvy candidate above those of others whose condition may be
more acute or long-term survival more assured, or who lack the wherewithal
to rent billboards or navigate the Internet. Certainly, public trust in the
fairness of organ allocation is threatened by such private solicitation. There is
the fear that in private negotiations, money may change hands. Justice and
equity may be compromised when "the market" rather than altruism directs
organ donation. Even so, who of us would not launch a website or pay for a
billboard to save a life?
The ELCA statement urges careful deliberation about replacing our policy of
"presumed refusal" with "presumed consent" under which we all would be
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presumed to be organ donors unless we specified otherwise or our family
objected. However, being required to provide tissues and organs so that
others might live flies in the face of our strong cultural concern for individual
autonomy and bodily integrity, even after death.
Whether or not "presumed consent" would result in an increased organ
supply is the subject of much debate with evidence from Europe that it may
have little impact on the supply chain. Effective or not, presumed consent is
a giant step away from our current reliance on altruistic donation, which
appeals to our best selves in making a donated organ a gift rather than an
obligation or transaction. Such gift-giving embodies compassion and affirms
our solidarity with others. Perhaps, in a world of infinite resources and
unbounded justice, gift-giving would be enough. However, what do we do in
this imperfect world where there are not enough resources to meet human
need? The focus on the organ as gift turns a blind eye to the fact that once
the gift has been given money enters the process-surgeons are paid;
hospitals are paid; why not living donors or deceased donors' families?
Perhaps living donors-especially the poor-would be coerced into accepting a
great risk for a pittance. However, cadaveric donations put no one at risk and
perhaps families would be more willing to donate if compensated.
Because many patients die before a needed organ becomes available, there
has been increasing interest in living donors, many of them unrelated to the
recipient. Living donors are sought for liver, kidney, pancreas, and small
bowel transplantation. However, asking someone to donate an organ that is
currently in use raises a raft of ethical questions-the most striking one being
how can one justify exposing healthy individuals to the risk of major surgery
and loss of an organ, or a slice of an organ, solely to benefit another? How
does one weigh the tangible health risk to the donor with the intangibles of
heroism, compassion, and gratitude that come with saving a life? In the
context of such desperate need, is free and informed consent of the donor
ever possible? And, if consent is possible, how is medicine's responsibility to
do no harm fulfilled?
Many of us have had to weigh the risks and benefits of surgery. Cardiac
bypass surgery saves lives, and the risk of life-threatening complications and
death is worth it for many. However, being a living donor puts an otherwise
healthy person at risk solely to benefit another. Surely, there is strong ethical
impetus to protect the health and well-being of living donors, to be certain
that they understand not only the surgical risks but also personal, financial,
and insurance implications of their decision. As there are no direct health
benefits to the donor, a true balance between risks and benefits for both the
donor and the recipient is required. Ethicists worry about situations in which
benefit accrues to one person or group at the expense of another.
Recognizing the real danger faced by living donors, true balance may involve
providing them with catastrophic life and health insurance policies. Even so,
at times, despite the compelling need and a willing donor, such sacrifice
would simply be wrong-such as when the recipient has a poor chance of long
term survival.
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Organ scarcity is forcing us to look to animals for help. Xenotransplantation
is the transplantation of cells, tissues, or organs from one species to another,
from animals to humans for example. Pigs are the most promising "donors"
for human organ transplants since they can be genetically modified relatively
easily-a necessity if rejection is to be avoided-and have similar anatomical
structure to humans.
As deep as the need for transplantable organs is and as promising as recent
pig studies are, there is a major ethical concern-the trade-off between
benefit to individual patients and risk of infection of the general population
with animal viruses.
All pigs harbor porcine endogenous retrovirus (PERV) that might infect organ
recipients with possibly deadly results. Bird flu is a current reminder of the
proclivity of animal viruses to jump to humans. Notably, this threat would be
to the public, not solely to an individual, since animal viruses can reprogram
themselves to jump from person to person bypassing the need for an animal
host. HIV is a powerful case in point. We must weigh desperate individual
need against the potentially grave, but unknown, risk of public infection. The
model of the autonomous patient making an informed decision does not help,
as this is not a risk taken solely by the patient. It is a public risk that requires
public consideration and attention to the common good. At the very least,
clinical trials ought not be undertaken unless and until the viral threat is
thwarted.
As the very public dying of Terri Schiavo so painfully reminded us, we need
to tell our loved ones of our wishes about end-of-life care including organ
donation. Moreover, we need not interfere in the fulfilling of our loved ones'
wishes to be a donor. Our families need to know and be supportive, as Todd
Krampitz's family knew and was supportive, of our desire to be an organ
donor. When Todd Krampitz died on April 20, 2005, he became a donor
himself, leaving his corneas so others could see again.
McLean is the director of biotechnology and health care ethics at the
Markkula Center for Applied Ethics and a Senior Lecturer in Religious Studies
at Santa Clara University. This article was originally published in The
Lutheran (Sept. 2005).
Man with billboard campaign for liver dies
This op-ed was published in the San Jose Mercury News on 31 January
2002 under the title, "Criminals Should Be Far Down on the Heart Transplant
List."
A Houston man who moved to the head of the line for a liver transplant after a
much-publicized billboard campaign has died eight months after the transplant.
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It was not clear whether Todd Krampitz, diagnosed with advanced LIVER
CANCER last year, succumbed to cancer, transplant-related complications or
some other cause. Family members did not return calls seeking information, but
thanked supporters in a statement.
"Definitely (the transplant) was the right thing to do. We gave him eight more
months with his family," said Sherrill Lanthier, director of the Multiorgan
Transplant Center at The Methodist Hospital where Krampitz, who died
Wednesday, had his operation. "We hope his story has heightened awareness of
the dire need for organ donation. While we don't condone advertising for an
organ ... we feel that transplanting Todd was the right thing to do for him."
The family statement noted that 32-year-old Krampitz donated his corneas "so that
now another will be able to see."
Krampitz's August 2004 transplant angered many waiting for organs and prompted
charges that he had cut in line. Most people wait months for a liver, and many die
before one is found. (In Texas, more than 1,200 people are waiting for fewer than
500 livers available in the state each year.)
The controversy prompted the United Network for Organ Sharing, which oversees
organ allocation, to recommend in November that hospitals discourage patients
from soliciting organs, and if possible, refuse to perform such transplants.
Supporters argued that the family that donated the liver to Krampitz might not
have donated anything at all without the media attention generated by the
billboards. Krampitz, who had a digital photography business, and his wife, Julie,
whom he married just two months before being diagnosed with cancer, appeared
on local television and CNN. Nationwide, patients were inspired to post their own
pleas on the Internet, with mixed results.
"It seems to me this tragedy of his death is a reminder of what happens when you
allow people to jostle in line to gain access to transplants, it may not be the best or
most effective use of this scarce resource," said Arthur Caplan, chairman of
medical ethics at the University of Pennsylvania, who criticized the Krampitz
transplant. "You wind up making it harder for people to trust the system is fair."
Without advertising, Krampitz likely would not have gotten a transplant. In
accordance with UNOS guidelines, which factor in severity of illness as well as
the patient's odds of benefiting from the operation, he was low on the waiting list.
That's because patients with advanced LIVER CANCER typically do not
survive long even after transplantation. (Without cancer or other complications,
transplant patients can hope to live out a normal lifespan.)
However, UNOS guidelines contain a loophole seldom used by deceased donors.
The loophole, called "directed donation," allows donor families to decide where
the organs go.
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The Krampitz billboards — which featured a smiling photo of the attractive
newlywed — placed next to busy highways, and a Web site detailing his story,
resulted in widespread public support. Less than a week after the signs went up
along U.S. 59 at Buffalo Speedway and the Beltway, an anonymous donor family
specified that the liver go to Krampitz.
Stung by criticism and sensitive to how their good fortune might strike those still
waiting, the Krampitz family soon stopped talking to the media. They put up
another billboard, one that said, "Thank you." They urged awareness of the need
for organ donors and provided updates on their Web site,
www.toddneedsaliver.com.
Five weeks after the transplant, Julie Krampitz reported on the Web site that Todd
was driving again and gaining weight. By December, he was back at work full
time.
A family photo shows a slightly wan-looking Krampitz.
A January update hinted of problems, with lab tests showing elevated liver
enzymes. There was no mention of organ rejection, and a biopsy showed the liver
was healthy. However, there was evidence of some sort of blockage in his bile
duct. A February entry expressed gratitude for the donor family's generosity, but
made no mention of Todd's health status.
The last entry says, "On the morning of April 20, 2005, Todd went to be with his
Lord and Savior. He was surrounded by his family and friends and passed away
peacefully."
Sharleen Bridgman of Aubrey, near Denton, was one of those angered by
Krampitz's transplant. At the time, she and her husband were living in a motel near
the Texas Medical Center while he waited for a liver. Today, Bobby Bridgman has
returned to his former self, having gotten a transplant one month after Krampitz.
Upon learning Krampitz had died, Sharleen Bridgman expressed sympathy for the
family — but remained unwavering in her criticism of the way they solved the
problem.
"I feel like if you advertise for something, you're buying. I still feel strong today
about making sure you go through the proper channels," she said. "Time was
ticking away for us, too.