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national, regional, and state data on organ donation and transplantation.
Here are some facts about the shortage of transplantable human organs:
Dr. Robert Metzger MD, President-Elect, United Network for Organ Sharing,
Prepared Witness Testimony, The House Committee on Energy and Commerce,
Subcommittee on Oversight and Investigations, “Assessing Initiatives to Increase
Organ Donations”, June 3, 2003
Over 81,000 patients are on the wait-list for transplantation in the United
States today and more than 5000 will die this year without receiving a
transplant. More startling is that almost 60% of those on the list today will
die without receiving a transplant. Yet organs from deceased donors are
recovered from less than 50% of actual, potential donors, resulting in the loss
of thousands of life-saving transplants. Most of the small, annual 1-2% increase
in the number of deceased donors has come from expanding the medical and social
conditions previously used to eliminate potential donors, while the wait-list
continues to grow at a rate of 12% annually.
Factors Influencing Families' Consent for Donation of Solid Organs for
Transplantation
Laura A. Siminoff, Nahida Gordon, Joan Hewlett, Robert M. Arnold
JAMA. 2001;286:71-77.
“Patients who have been declared dead using neurologic criteria (irreversible
loss of all brain function but maintained on ventilators) are the single largest
source of transplantable organs. Unfortunately, of these 12,000 to 15,000
potential donors, fewer than 6,000 become organ donors each year.
The major factor limiting the number of organ donors is the low percentage of
families who consent to donation. A 1995 study of families of donor-eligible
patients found that 86.5% were asked to donate but only 47.3% gave consent.
Other studies have confirmed these findings.”
The Consent Process for Cadaveric Organ Procurement How Does It Work? How
Can It Be Improved?
Dave Wendler, Neal Dickert, Dave Wendler
JAMA, January 17, 2001—Vol 285, No. 3, page 329
“Despite the clear need for solid organs, the most comprehensive study to
date estimates that only 40% of suitable individuals donate their solid
organs after death.” (quoting Conrad S, Brigham L, Eakin M, Sheehy E,
Hunsicker L. Association of Organ Procurement Organizations (AOPO) Death Record
Review Study. Paper presented at: AOPO Briefing of Federal Officials; November
15, 2000; Rockville, Md.)
Estimating the Number of Potential Organ Donors in the United States
Ellen Sheehy, Suzanne L. Conrad, Lori E. Brigham, Richard Luskin, Phyllis Weber,
Mark Eakin, Lawrence Schkade, Lawrence Hunsicker
The New England Journal of Medicine, Volume 349(7), 14 August 2003, pp 667-674
“We studied the size and composition of the national pool of brain-dead organ
donors during a three-year period…The predicted annual number of brain-dead
potential organ donors is between 10,500 and 13,800. The overall consent
rate (the number of families agreeing to donate divided by the number of
families asked to donate) for 1997 through 1999 was 54 percent, and the
overall conversion rate (the number of actual donors divided by the number of
potential donors) was 42 percent.”
Variation in Organ Donation Among Transplant Centers
Department of Health and Human Services, OFFICE OF INSPECTOR GENERAL
May 2003 OEI-01-02-00210
“We analyzed data for 190 of the nation’s 255 transplant centers on patients
who were medically eligible to be organ donors and the number of donors for whom
consent was given to donate. We found that the rate of consent for donation (the
consent rate) varies widely among transplant centers at the national level, as
well as within geographic regions and at the organ procurement organization (OPO)
service area level…compared to a national average of 51 percent.”
“More than 80,000 Americans are currently awaiting organ transplants, yet
fewer than 25,000 people received a transplant in 2002. During that same year
more than 6,400 people died while waiting for a transplant. It is estimated that
12,000 to 15,000 deaths annually could yield organs for transplantation;
however, fewer than half of those deaths led to such an outcome in 2002.”
“The consent rate is the number of patients for whom consent to donate organs
was given, as a percentage of all patients at the hospital who were medically
eligible to donate organs. A medically eligible donor is defined as a patient
aged 70 or younger whose death is determined by neurological criteria (brain
death) and who lacks certain clinical conditions, such as cancers, tuberculosis,
HIV, or hepatitis, among other diseases.”
“…these 190 transplant centers obtained consent from a mean of 51 percent of
potential donors, with a median of 52 percent.”
Knowing Patients’ Preferences about Organ Donation: Does it Make a
Difference?
Laura A. Siminoff, and Renee H. Lawrence
The Journal of TRAUMA J Trauma. 2002;53:754 –760.
We do know that many people who desire to donate do not sign donor cards and
that many never tell their families about their desire to become donors. A
recent public opinion study by Guadagnoli et al. found that although 75% of
respondents under the age of 70 years indicated a willingness to donate, just
over half said they had told a family member about their preference. Other
studies indicate that no more than half the individuals who believe in organ
donation have signed donor cards or designated themselves as such on drivers’
licenses.
About 10% of families who knew their deceased relative wanted to donate
reversed that decision.
Gift of Hope OPO / Illinois Secretary of State Quoted in The Northern Star
2/15/2005
The Gift of Hope, an organ and tissue procurement organization, estimated
that 40 percent of families say "no" when approached for permission. Even
when families are notified of a donor’s decision in advance, 19 percent say no,
according to the Illinois Secretary of State Web site.
“Donating organs has support, not signatures”
Philadelphia Inquirer, 2/14/2005
Zink's research shows that when relatives know that a loved one wanted to
be an organ donor, 85 percent consent to donation when they are approached
by a transplant coordinator. In contrast, when the next of kin do not know
the deceased's wishes, only 53 percent give consent. (Sheldon Zink is
director of the program for transplant policy and ethics at the University of
Pennsylvania.)
Coalition on Donation
2005 Survey
“When individuals do not make their intentions about donation known prior to
their death, it is most often up to surviving family members to make that
decision. Currently, the national consent rate for donation is 55 percent.”
The process of organ donation and its effect on consent
Laura A Siminoff, Robert M Arnold and Joan Hewlett
Clinical Transplantation 2001: 15: 39–47
Objective: To identify those factors that enhance or inhibit organ donation
in order to provide data to help policy makers, hospital administrators and
transplantation professionals make informed choices about how to modify the
donor system and to structure ‘best practice’ interventions.
Methods: The study was conducted using a stratified random sample of 23
hospitals in the Pittsburgh and Minneapolis:St Paul standard statistical
metropolitan areas. Each week, the medical charts of all in-patient and
emergency room patient deaths at each hospital were reviewed using a
standardized review protocol to determine eligibility for organ, tissue, and
cornea donation. A total of 10681 patient charts were reviewed over a 4-yr
period. Eight hundred and twenty-eight cases out of 1723 eligible cases were
selected for inclusion in the study. Data were collected on 827 of these cases.
All health care providers (HCPs) who spoke with the family after the patient’s
death or discussed donation with the family were interviewed.
Results: Of the 10681 patient charts reviewed, 16.5% were eligible to donate
either organs, tissues, or corneas, and 87.0% of donor-eligible patients’
families were approached and asked to donate. Consent rates were 23.5% for
corneas, 34.5% for tissues, and 46.5% for organ donation.
Presumed Consent: An International Comparison and Possibilities for Change
in the United States
Kenneth Gundle
Cambridge Quarterly of Healthcare Ethics (2005), 14, 113–118
The work done to maximize the efficiency of the organ donation system in the
United States and the attempts to raise levels of people who sign up to donate
on donor cards is very commendable. Yet in 2001 6,439 people died while waiting
for a transplant, up from 4,855 patients in 1998 and nearly double the 3,916
candidates who died while waiting just five years earlier in 1996. As of July
2003 over 82,000 people in the United States are awaiting the transplant of some
organ, even though a waiting list of 23,000 in June of 1991 was considered a
grave concern. None of these numbers show the least sign of decrease—instead
there is only a steady worsening of America’s organ shortage crisis. A
contributing factor in these deaths is an inability to convert available organs
into successful transplants. Whereas the demand for organs has been risen
400% over the past 10 years, the supply of cadaveric organs has remained
relatively stagnant. While the waiting list has risen by 60,000, the number
of deceased donors has gone up by less than 1,700—from 4,509 in 1990 to 6,182 in
2002. The technology for successful transplantation exists, and the United
States has knowledgeable surgeons and an infrastructure that would allow many
lives to be saved if only more organs were converted from medically suitable
donors to actual transplant. At some point the system that perpetuates this
problem must come into question.
CADAVERIC ORGAN DONATION: ENCOURAGING THE STUDY OF MOTIVATION
Sara Taub, Andrew H. Maixner, Karine Morin, Robert M. Sade, For The Council On
Ethical And Judicial Affairs, American Medical Association
Transplantation, Vol. 76, 748–751, No. 4, August 27, 2003
“Approximately 6,000 patients per year, or 16 per day, with end-stage
organ failure die because of the lack of available organs. Each year only 35% to
50% of potential donors consent to donation (1). During the last 20 years,
vigorous educational campaigns, both voluntary and legislative, designed to
increase organ donation have failed to increase donation rates significantly.
The need for organs has grown nearly five times faster than the number of
cadaveric donors: the annually compounded rate (1990–2000) of increase in number
of patients on waiting lists has averaged 14.1% a year, whereas the rate of
increase of donors has averaged 2.9% a year (2).”
(1) Gortmaker SL, Beasley CL, Brigham LE, et al. Organ donor potential and
performance: size and nature of the organ donor shortfall. Crit Care Med 1996;
24(3): 432–439.
(2) United Network for Organ Sharing. Critical data: U.S. facts about
transplantation. Available at: http://www.unos.org/Frame_default.asp?Category=Newsdata.
Accessed July 5, 2001.
“For two decades, vigorous educational campaigns, both voluntary and
legislative, designed to increase organ donation have failed to increase
donation rates significantly.”
Cadaveric Organ Donation: Rethinking Donor Motivation
Robert M. Sade, MD, Department of Surgery, Medical University of South Carolina
Arch Intern Med. 1999;159:438-442
“The gap between the numbers of patients in need of organs for
transplantation and the number of organs available is at a critical level
nationally. From 1988 to 1996, the number of patients on waiting lists for a
transplant rose from 16,026 to 50,047 (212%). Yet, in the same period, cadaver
donors only increased from 4084 to 5416 (33%). Because of the shortage of
donors, 1502 patients died awaiting a transplant in 1988; this number increased
to 3916 deaths in 1996, an increase of 161%. This expanding gap is not due to a
shortage of potential donors. By far the most common reason for nondonation is
denial of consent by the donor's family; only 4800 (35%) of 13,700 medically
suitable donors agreed to donation in 1993. Donation of most medically
suitable organs would save thousands of lives by reducing or eliminating the gap
between supply and need for organs.”
“Programs have been devised to overcome the many reasons for nondonation
through education, explanation, use of more appropriate personnel to request
donation, and others. Yet, despite these voluntary efforts, cadaveric donation
has remained nearly stable over the last decade. Government policymakers have
not been unaware or inattentive to the organ gap problem. The Uniform Anatomical
Gift Act, adopted by all states about 25 years ago, simplifies the process of
committing to donate one's own organs. The National Organ Transplantation Act of
1984 (NOTA) created a national organ and transplantation network and this
function was contracted to the United Network for Organ Sharing (UNOS). One of
the major purposes of UNOS is to encourage organ donation. The Omnibus Budget
Reconciliation Act of 1986 mandated hospitals to refer all potential donors to
organ procurement agencies.
Like the voluntary efforts cited earlier, mandatory strategies have not
substantially increased rates of donation, leaving us still with a large
discrepancy between potentially available organs and those donated.”
Organs for All
Gloria Taylor
Hastings Center Report, May/Jun 1997; 27, 3; pp 46-47
“The only state that prohibits directed donations based on group
membership is Florida.”
Florida Anatomical Gift Act 2004
Florida Statutes
ANATOMICAL GIFTS (ss. 765.510-765.546)
765.513 Persons and entities that may become donees; purposes for which
anatomical gifts may be made.--The following persons or entities may become
donees of gifts of bodies or parts of them for the purposes stated:
(1) Any hospital, surgeon, or physician for medical or dental education or
research, advancement of medical or dental science, therapy, or transplantation.
(2) Any accredited medical or dental school, college, or university for
education, research, advancement of medical or dental science, or therapy.
(3) Any bank or storage facility for medical or dental education, research,
advancement of medical or dental science, therapy, or transplantation.
(4) Any individual specified by name for therapy or transplantation needed by
him or her.
However, the Legislature declares that the public policy of this state
prohibits restrictions on the possible recipients of an anatomical gift on the
basis of race, color, religion, sex, national origin, age, physical handicap,
health status, marital status, or economic status, and such restrictions are
hereby declared void and unenforceable.
“Years on Dialysis Brought Joe Mole To a Crossroads”
Michael J. McCarthy
Wall Street Journal November 3, 2005
Dialysis is one of the great life-extending treatments of all time. Despite
failed kidneys that can kill a person in a matter of days, life can be preserved
for a decade or more. Yet among those with kidney failure who have died,
roughly one in five chose to quit dialysis, according to government data.
Forgoing dialysis means nature takes its course, poisoning the body to death,
often within a week or so.
Between 1995 and 1999, about 36,000 people died this way, government
statistics show. Between 2001 and 2002, the latest data available, an additional
25,000 had died; the mean age of those who chose to quit dialysis was 74.
The number is likely to keep growing because more people are receiving dialysis.
Fueled largely by an increase in diabetes, the number of Americans on
dialysis machines doubled between 1988 and 2003, to nearly 325,000. About
100,000 people start the treatment each year.