UNOS Update
January–February 2008
Vulnerability UnmaskedTHE RESPONSIBILITIES OF CARING FOR THOSE WHO MUST
PLACE THEIR TRUST IN THE SYSTEM — AND IN US
Editor’s note: Sue V. McDiarmid, M.D., served as president of the
OPTN/UNOS board of directors, 2006 – 2007; the following is the
presidential address she gave to the OPTN/UNOS board on June
26, 2007, before she handed the presidential gavel to Timothy L.
Pruett, M.D.
By Sue V. McDiarmid, M.D.
You know it when you see it, epitomized in a wide-eyed look,
defenseless against daunting adversities — disease, poverty,
age, discrimination, war, disaster, famine. Victims in the making.
If we allow the nobility in our human nature to respond,
our response is visceral — the urge to protect, to roll back
the darkening clouds of threat and danger, to advocate, to
make a change.
Perhaps it is the inherent vulnerability of the very young
that caused me, newly arrived in the United States, unclear in
my path, to choose pediatrics. Since that decision, I have not
paused long enough, until this past year, to consider the
motivation for either that choice or its consequences or to
ponder a broader perspective of vulnerability in a wider world.
That word, “vulnerable,” leapt off the page at me with a
whole new spectrum of meaning when I first set it down,
struggling to express my feelings and to represent yours, in a
letter to The LA Times in October 2006.
We, UNOS and the OPTN, were accused of being asleep
at the switch, charged with the failure to take decisive action
quickly and publicly against errant programs. Just close the
programs down, let their trial be in the press, those clamoring
against us said. Lost in the rhetoric of a good story were the
consequences of closing a program without substantive cause,
disenfranchising candidates who were hoping, trusting, for a
second chance at life.
Pause for a moment, as I did that day, to think of the
96,000* patients on our waiting list. What might 96,000
people in one place look like — they are a heartbreakingly
vulnerable population.
Not merely sick, but haunted by the threat of death,
Damocles’ sword suspended each day over each head.
Vulnerability made worse by disease, weakened physical
strength, dependence on machines, medications, caregivers
and on us, to be as wise as Solomon, all the time knowing
there’s not enough new life to go around.
With this knowledge comes a heavy burden of
responsibility. For me, the depth and meaning of vulnerability
under which our patients suffer — and the protection we must
give them — crystallized as I wrote that letter and gave me a
new vision of the mission ahead.
The vulnerability of children
Let me start with the children, a world I know. This is a
minority population, without an independent voice of their
own, dependent on adults like us to translate accurately their
unique predicament, to be their champions.
In the world of transplantation, children are blessed by
their resilience but cursed by their size. For the little ones,
their rate of death on the waiting list exceeds that of any other
age group. In the past five years, close to 1,500 children have
died on the waiting list. Those children could have had an
average additional 10 years of life with a transplant — 15,000
child-life years lost, their futures denied.
What have we done about this?
The first pediatric summit, held in March 2007 in San
Antonio, Texas, was convened by UNOS, the Health Resources
and Services Administration and the Organ Donation and
Transplantation Alliance. OPOs, pediatric intensivists and
transplant physicians and surgeons joined forces to prevent
children from dying on the pediatric waiting list.
We determined the actions needed to increase the number
of pediatric donors. We conceptualized innovative allocation
systems that will preferentially place small pediatric donors
into the neediest small recipients — without affecting the
access to transplants for adults. We envision the broadest
possible sharing to match donor and recipient size — with
limits to distribution determined by biology, such as cold
ischemia time, rather than by geography.
It is in our hands to make the difference to save these
young lives.
...
The vulnerability of living donors
Both bring unique vulnerability. On one hand, a healthy
person is exposed to risk in order to save the life of another;
on the other hand, a person’s dignity at the end of life must
be protected.
This past year we have begun what can best be described
as “soul searching” as we try to determine
how we should share in the responsibility
of protecting the practice of live
donation and the safety of living donors.
Potential living donors are vulnerable
to their own emotions; I have so often
heard a parent say that she would give
her life for her child. Potential living
donors also are vulnerable to the
emotions of their family and friends,
which can run the risk of making the
living donor’s consent tantamount to
being coerced.
How do we best educate potential
living donors not only to the immediate
risks of the operation itself, to the
potential consequences of lost income,
to the potential difficulty in getting health and life
insurance — as well as to the long-term health risks, as yet not
well defined, but perhaps 20 years or more down the road?
Doesn’t UNOS — in its role of establishing and holding
transplant programs to standards — have a special
responsibility to further delineate the benchmarks for the
safe practice of living donation? And isn’t it also our job to
participate in overseeing donor safety?
As a community, we certainly thought so when many of us
participated in 2005 in the Vancouver Forum on the Care of
the Live Organ Donor. We, UNOS, now mandate reporting
within 72 hours of any living donor death or need for
transplant. Does that mandate go far enough? What data do
we need to be able to answer the question on the short-term
risk to living donors?
And, much more problematic, is the “who and how” of
monitoring a living donor’s health in the long term. The
logistics of 20-plus years of tracking are daunting, as is the
cost. We currently focus on monitoring short-term living
donor safety, but we cannot abdicate our responsibility to
advocate for long-term follow-up, push for the financial
support to make follow-up a reality, and to collaborate and
advise on national efforts shared by the transplant community
and the federal government, including the Department of
Health and Human Services and the National Institutes of
Health to fulfill our responsibility to living donors.
The vulnerability of the poor
Living donation has a darker side, though, beyond our direct
purview. We cannot shield our conscience from the exploita-
tion of those who sell parts of themselves — impelled most
often by poverty — to those with the means to buy their
chance at survival.
Those within the grip of poverty are particularly vulnerable
to any wind that fans the smallest flame of hope, a hope that
somehow life can be better. To take advantage of that
exploitable hope is moral treachery, especially when the
consequences of grasping at that thin straw of hope may bring
disease — and even death.
http://www.unos.org/SharedContentDocuments/Jan_Feb08_First_Person.pdf
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