From: LeoCasey <LeoCasey-AT-aol.com>
Date: Wed, 25 Mar 1998 19:35:26 EST
Subject: M-TH: Medical Ethics and Liver Transplants


Apropos of our recent discussion of medical ethics, I thought that this
article in today's _New York Times_ on the conflict between the ethics of the
situation and the market imperatives would be very informative to members of
the list.

March 25, 1998

Patients' Lives on the Line in Battle Over Transplants 

By SHERYL GAY STOLBERG

WASHINGTON -- For two years and one month, Mindy Ervin has waited in uneasy
limbo for a new liver. Too well to be ushered to the top of the transplant
list, yet so sick that she has already planned her own funeral, she spends
most of her time in bed, hoping the telephone will ring with news of an
available organ.

A former nurse who suffers a rare autoimmune disease, Mrs. Ervin, of
Portsmouth, R.I., lives in the region with the nation's longest wait for
livers. She cannot have her transplant in Florida or South Carolina, where
waiting times are shorter; her insurance company will not permit it. Five
weeks ago, she endured a devastating false alarm. She dashed to the New
England Medical Center in Boston for the long-awaited operation, only to learn
the next morning that the donated organ was unsuitable.

"I told my husband, 'This is not living,' " said Mrs. Ervin, adding that she
no longer expects to see her 37th birthday in July. "I'm just existing,
waiting for it to happen, and nobody can tell me if it is going to happen.
Emotionally, I don't know how much longer I can hang on."

Now the Ervins must contend with an additional uncertainty: The Clinton
administration is about to dismantle the regional system for distributing
donated organs and replace it with a national list in which the sickest
patients would get priority. In a recent letter to 89 members of Congress,
Donna E. Shalala, the secretary of health and human services, sketched her
proposal, saying the change would even out waiting times across the country
and insure that very sick people do not die waiting while those who are less
acutely ill receive transplants.

But Dr. Shalala's plan, which is expected to be codified as a federal
regulation this month, has done little to ease the minds of patients like Mrs.
Ervin and even less to settle the Solomon-like debate about how organs -- and
in particular livers, which are in extremely short supply -- should be
distributed. Rather, it has exposed a nasty political and economic fight
between large and small transplant centers, each vying for its share of the
lucrative transplant business, in which an operation can cost $250,000.

Surgeons who trained side-by-side are accusing one another of putting money
ahead of patients' interests. The fight is so venomous that Dr. John Fung,
chief of liver transplant surgery at the University of Pittsburgh Medical
Center and an outspoken opponent of the current system, complained that he has
been "blackballed from administrative positions" in scientific societies by
doctors who disagreed with him.

Small transplant centers, fearing that a national list could put them out of
business, have argued that a national list would concentrate organs in big
cities, hurting poor patients, especially minorities, who do not have the
means to travel. Big hospitals have complained that their smaller counterparts
are trying to hoard organs for patients who are not desperate.

In Washington, the lobbying is as intense as if the fight were over a tax
bill. The Pittsburgh hospital, which pioneered liver transplants, has retained
a Little Rock, Ark., lawyer who represents President Clinton to press its case
that the regional system should be scrapped. A coalition of mid-size medical
centers, including the University of Cincinnati, Vanderbilt University and a
doctors' group from the Medical University of South Carolina, is fighting back
with its own big-gun lobbyists.
"I wish we were having an open-ended debate about what's fair," lamented Dr.
Arthur Caplan, a bioethicist and the author of "Am I My Brother's Keeper,"
(Indiana University Press, 1998), a book about liver transplants.
"Unfortunately, what I suspect we are seeing is a political squabble among
transplant centers about what's in their interest."

Caught in the middle of this fracas are patients like Mindy Ervin, who said
she has no idea how the rules would affect her. With more than 10,000 people
waiting for a liver and only 4,000 livers available each year, she noted,
"some of us are going to die." The question that is dividing transplant
surgeons and patients is what system will make the best use of donated organs
and save the most lives.

"It's among the thorniest issues I've dealt with here," said one official at
the Health and Human Services Department who is involved with the proposed
rules and who spoke on condition of anonymity. "A lot of things we do involve
people's lives, but changing the system of distributing organs alters who
lives and who dies, or how long you live and when you die."

While a sickest-first national policy might seem to make the most sense, some
experts, including Caplan, say it may not be the best use of organs. Sicker
people are more likely to die after their transplants, or to need second and
even third transplants. The problem is especially acute with liver patients;
unlike people in kidney failure, they cannot be kept alive through dialysis or
other medical means.
"It's as if we were in a lifeboat," Caplan said, "and instead of trying to
figure out how many of us might survive a shortage of food and water, we said,
'Let's pick the people who are closest to dead and save them.' "

At the same time, projections of how the new policy would affect patients
conflict. An analysis performed for the Pittsburgh hospital by CONSAD Research
Corporation found that Dr. Shalala's proposal would save as many as 200 lives
a year by offering organs to people who would not otherwise get them.

But a competing study by the United Network for Organ Sharing, the nonprofit
organization that runs the distribution system, found that Dr. Shalala's plan
would result in 761 additional repeat transplants each year, and that the
overall survival rate after transplants would drop from 75 percent to 68
percent.

"Do we want to transplant the sickest patients first, or the most people
possible?" asked Walter Graham, the network's executive director, who favors
keeping the current system. "Those are two conflicting objectives. Our answer
is that you want to do both, but you can't do both."

So vexing is this issue that the attempt to draft new rules has languished in
the bureaucracy since 1989, five years after the passage of the National Organ
Transplant Act. The law spawned the organ sharing network, a collection of 63
independent organizations that procure organs in their local areas and assign
them to hospitals.

The network's distribution plan works this way: Patients are given a rank of
one, two or three, depending on the severity of their illness. When an organ
becomes available, it is offered to people in the area, starting with the
sickest. If there are no local patients, the organ is offered regionally, then
nationally.

But donation patterns, as well as waiting lists, vary greatly throughout the
nation's 11 regions. In New England, for instance, the wait for a liver is
roughly two years, five times as long as in the Southeast.

In 1996, Dr. Shalala noted in her letter, more than half the livers used
locally were given to patients who were well enough to be at home. Yet that
same year, nearly 400 of the 953 patients who died while awaiting transplants
died in the hospital.
With competition for organs fierce, many patients "game the system," said Dr.
Caplan, the bioethicist. Some sign up at more than one transplant center,
which is permitted under the network rules. Others switch to a hospital where
the wait is short.

That is not an option for Mrs. Ervin, whose husband works in a boat yard
painting 
yachts. "People tell us, 'List down in Florida, the wait is shorter,' "
Michael Ervin said, "But we don't have the money, and our insurance won't pay
for it."

Mistrust among doctors and patients runs deep. Goldsby Margiotta, a Virginia
woman who has been waiting three years for a liver, said she stopped going to
a patient support group when the husband of another transplant candidate began
calling her home with prying questions. "He thought I was some kind of
interloper trying to get his wife's liver," she said.

To complicate matters, the lists are fluid, with patients' ranks changing
constantly depending on the state of their health. "Everybody just thinks you
put your name on this big list and when your number comes up they call you,"
Mrs. Ervin said. "It's not like that at all. People constantly ask me, 'What
number are you?' I have no idea."

The high demand is, in a sense, testimony to the success of transplant
medicine, particularly liver transplants. Nearly every liver transplant
surgeon in the United States has trained at the University of Pittsburgh, or
trained under someone who has. Over the past decade, the Pittsburgh-trained
surgeons fanned out across the United States, starting programs at local
hospitals.

In 1990, there were an estimated 50 liver transplant programs in the country;
today, there are 120. As the number of programs grew, the number of operations
performed in Pittsburgh declined by more than half, from 569 in 1990 to 230
last year, according to Dr. Roger Evans, a health policy analyst at the Mayo
Clinic in Rochester, Minn., who studies organ allocation. "In the end," he
said, "Pittsburgh created its own competition."

In 1991, the organ sharing network made a crucial change in its distribution
policy that set the stage for the current dispute. Earlier, patients facing
imminent death had priority for organs, no matter where they lived. When that
provision was eliminated, the number of patients dying on Pittsburgh waiting
list ballooned, said Dr. Fung, the hospital's liver transplant chief.

In 1993, after pressing unsuccessfully for the organ network to rescind the
rule change, Pittsburgh officials turned to the government, which by that time
was considering setting standards for organ allocation. They enlisted David
Matter, a Pittsburgh real estate developer and college friend of President
Clinton, to raise the issue at the White House. Matter said he wrote and
talked to the president several times. And Pittsburgh hired a Little Rock
lawyer, John R. Tisdale, who said last week that he was encouraged to see Dr.
Shalala "leaning in our direction."
Also encouraged were transplant surgeons at the University of Nebraska,
University of California at San Francisco and other large hospitals, including
Mt. Sinai Medical Medical Center in New York. Dr. Charles Miller, Mt. Sinai's
director of transplantation, said the current system is so Balkanized that a
patient in his intensive care unit might be denied a liver that goes to
someone waiting at home in Ft. Lee, New Jersey, just across the Hudson River.

But officials of the organ sharing network are not going to abandon their
policy without a fight. They have hired their own lobbyist and hinted at a
lawsuit, saying the government has no right to impose rules. "Where does all
this come from?" asked Graham, the executive director. "The only answer I can
come up with is that it came as a result of political influence."

Graham contends the current system encourages organ donation, because donors
want to know that their organs will help their neighbors, a view Miller
describes as "beyond bunk." Doctors from smaller transplant centers, however,
agree with Graham. They say liver transplant candidates are dying across the
country and that replacing the regional system will do nothing more than
change where people die.
"This national sharing plan is not going to bring organs to Cincinnati,"
complained Dr. Douglas Hanto, director of the adult liver transplant program
at the University of Cincinnati. "What will happen is, livers will be taken
from Ohio and sent to Pittsburgh. I think Pittsburgh is just flat out very
interested in their own program."
To which Fung, the Pittsburgh surgeon, retorted: "Call Doug Hanto back. Ask
him what I did for him three or four years ago when he had a very sick patient
in Ohio. Ask him if I sent him a liver from Pittsburgh. We are willing to live
and abide by the rules."

As the debate rages, Congress is considering jumping in. Sen. William Frist, a
Tennessee Republican and heart surgeon who practiced at Vanderbilt University,
said he would consider holding hearings once the final regulations are
announced. He said he is particularly concerned that a national policy would
deny access to poor patients who cannot travel.

"The secretary cannot play doctor," Frist said. For her part, Dr. Shalalasaid
in her letter that she does not intend to "interfere in the practice of
medicine;" she simply expects the organ sharing network to devise new rules to
meet the government's standards.

As for patients, they can do little more than wait. Mrs. Ervin's transplant
surgeon, Dr. Richard Rohrer, chief of the division of transplant surgery at
New England Medical Center, is optimistic about her prospects. Though her
blood type is AB, the least-common type, she could accept an organ from any
blood donor group. "She has escape channels that other patients don't," Rohrer
said.

But his patient is frightened and feels herself growing weaker. She is
nauseated, jaundiced and has not eaten solid food for weeks. Because her
disease has destroyed her immune system, she rarely leaves the house, for fear
of catching a cold. The weeks since her false alarm have been especially
tough.

"I hope I get the call again," she said. "But I hope it comes before I'm so
ill that I won't be able to survive the surgery. That's my biggest fear. Will
it come soon enough?"


     --- from list marxism-thaxis-AT-lists.village.virginia.edu ---