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TRANSCRIPT
THE BUSINESS OF \tEDICI~E .
ORGAN DONATION AND TRANSPLANTATION
by
Susan L Pansh
A SENIOR THESIS
m
GENERAL STUDIES
Submitted to the General Studies Council in the College of Arts and Sciences
at Texas Tech University in Partial fulfillment of the Requirements for
the Degree of
BACHELOR OF GENERAL STUDIES
Approved ,.--....,_
v DR. LLEWELLYN DENSMORE Department of Biological Sciences
Co-Chair of Thesis Committee
""PJR. JAMES HOFF~"" Department of Management
Co-Chair of Thesis Committee
Accepted
DR. MICHAEL SCHOENECKE Director of General Studies
DECEMBER :woo
fie 703.~
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ACKNOWLEDGEMENTS
I would like to thank my Co-Chairs, Dr. Llewellyn Densmore and Dr. James
HotTman for serving on my Thesis Committee. I am very grateful for theIr time and
input, as well as their patience with me in the completion of my thesis.
To Dr. Michael Schoenecke, Director of General Studies, I also extend my
gratitude for working with me to generate my thesis topic, ideas, and preliminary outline,
as well as for reviewing my final draft. I am also very thankful for Mrs. Linda Gregston,
General Studies Advisor, for being so encouraging along the way.
My parents and friends have also been a huge source of encouragement and
prayers, and I am so glad they have been here to support me as I tackled this project.
Through al1 of these people, and most importantly through strength and perseverance
supplied only through my faith in Jesus Christ, I have written a paper I am proud of.
Finally, I would like to express my deepest heartfelt thanks to an unnamed Texas
family who decided to give the gift of life. Through the death of their daughter, and their
decision to donate her organs, my mother was able to receive a liver transplant ten years
ago. I can never fully express how thankful I am for the time I have been able to have
with my mom that would have otherwise not been possible without their gift. It is
because of this personal experience that I have such an interest in the process of organ
donation and transplantation.
\I
TABLE OF CONTENTS
ACKNOWLEDGEMENTS
LIST OF TABLES
LIST OF FIGURES
CHAPTER
I. THE BASICS OF ORGAN TRANSPLANT A TION
Introduction ______________ ........ .
History ..... . . . . . . . .. . ...
II
v
VI
Today ............ < • • • • • • • • • •• c • • • • • • • 3
II. THE NATIONAL TRANSPLANT SYSTEM ...... ........... 4
III.
IV.
Background
UNOS ............... .
THE BUSINESS OF ORGAN PROCUREMENT CENTERS
What is an OPO
The Donation Process . . . . . . . .. . ..
Referral ......................... .
Consent
Procurement
Education
General Public
Medical Professionals
THE TRANSPLANT RECIPIENT
Initial Evaluation
Indications
Contraindications
Financial Concerns
Medical Costs
4
4
7
7
7
7
8
8
9
9
9
11
11
11
12
13
13
Non-medical Costs .................... . . . . .. 13
iii
V
VI.
Financing the Transplant .................... . 13
14
15
15
16
The Wait ........ . ........................... .
Organ Allocation
Kidney
Liver
Heart
Lung
......................... 16
, . . . . . . . . . . . . . . . . . . . . . . .. 17
Pancreas
After Transplantation
THE NEED FOR ORGAN DONATION
INCREASING ORGAN DONATION RATES
Requesting Organ Donation
Time
Joint Request
Setting
Dispelling the Myths
Money for Organs
Brain Death is Final
Funeral Arrangements
17
17
. . . . . . . . . . . . . . . .. 19
. . . . . . . . .. . .... ~ 1
21
•• 0 •••••••••••••• ~ 1
... .. ..... .. 21 ..,..,
..,."' --'
')'"' --' . . . . .. .. . . .. ~4
Preferential Treatment and Discrimination
Lifesaving Efforts ~5
Illness or Age 25
Religion ...... . .. ................ 26
Drivers Licenses, Donor Cards, and Wills
A wareness Projects
....... ~6
~6
Conclusion .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. 29
BIBLIOGRAPHY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. 30
IV
LIST OF TABLES
1. Number and Types of Organ Transplant Programs in the U. S. . . . . . . . . . .. 3
2. Organ Preservation Times . . . . . . . . . . . . . . . . . . .. 9
3. Annual Deaths of Patients on National Waiting List ............... 20
v
I.
')
3.
5.
LIST OF FIGURES
UNOS Regional Map
Texas OPO Service Areas
Minimal skills or traits required for persons responsible for approaching Family members of potential organ donors to request donation
Patient Sur\j, al Rates at One. Three. and FI\ ~ Years
Number of patients on waiting list \s. number of donors
\1
8
18
CHAPTER I
THE BASICS OF ORGAN TRANSPLANTATION
Introduction
One of the growing frontiers of modem medicine is organ transplantation.
Although this growth exists, the majority of the American public does not really
understand how this "business" works. Even some medical professionals still lack
understanding concerning their role in the process. For successful improvement in saving
lives through the process of organ transplantation, the process needs to be understood by
all.
History
The dream of transplanting organs from one organism to another has been in
existence for centuries. The first serious attempts at human transplantation began with
European surgeons in the early 1900's. Many early tries were less than successful and
the "early surgeon researchers were viewed by their colleagues as demented dreamers at
best and goulish grave robbers at worst," (Maier, 1991, p. 176). However. modem organ
transplantation as we know it has only been successful since the middle 20th century.
Most early attempts dealt with the kidney because humans have two of these
organs and can live with only one, as well as the fact that dialysis machines can keep a
person with failed kidneys alive. Also, the kidney transplant is a faIrly simple surgery
because the failed kidney is not even removed, but the new kidney is just hung beside the
old one. Dr. Joseph Murray performed the first successful human kidney transplant in
1954 (Maier, 1991). Because the transplant was perfonned between identical twins, there
was not a problem with the body's immune system rejecting the "foreign invader."
The problem of rejection by the immune system needed to be addressed in order
to further transplantation. In the 1940's, surgeons tried to slow the immune system
through the use of radiation, but this treatment was so effective at shutting down the
immune system that people died of infection before rejection of the organ could even be
an issue. In the early 60's the use of a drug combination of azathioprine and a
multipurpose corticosteroid called prednisone became common practice for preventing
rejection. This was successful with kidney transplants and allowed for attempts at
transplanting other human organs.
A liver transplant, probably the most complicated of the surgeries, was not
completed until Dr. Thomas Starzl perfonned the operation in 1967 (Maier, 1991). Over
the years, he has continued to research and develop many surgical innovations important
in transplant medicine. Also in 1967, Dr. Christian Barnard perfonned the first heart
transplant. Other organs followed, including the pancreas in 1968, and the lung in 1983
(UNOS, 2000). Attempts at transplanting combinations of organs have also been made
with some success.
Another major milestone in transplantation came through diligent research in
immunology by lean-Francios Borel leading to the development of cyclosporine. "In
effect, cyclosporine is a highly selective drug that blocks the immune system's attack on
a transplanted organ while leaving the body enough resistance to fight deadly infections,"
(Burton, 1992, p.6). This important transplant drug was approved for use by the Food
and Drug administration in 1983, and has made possible the vast increase in the number
2
of successful transplants. Since then, other immunosuppressant drugs have been
approved.
Today
Transplants are performed on a routine basis all over the country. As of October
29, 2000, there were a total of 854 transplant programs at 261 medical institutions in the
United States (UNOS, 2000). The following table shows the breakdown of these
programs.
Table 1: Number and Types of Organ Transplant Programs in the U.S.
Type of Program Number
Kidney Transplant Programs 244
Heart Transplant Programs 141
Pancreas Transplant Programs 126
Liver Transplant Programs 115
Heart-Lung Transplant Programs 88
Lung Transplant Programs 80
Intestine Transplant Programs 37
Pancreas Islet Cell Transplant Programs 23
Source: UNOS (2000). Retrieved October 29, 2000, from the World Wide Web: http://www. unos. org
Transplants are accepted as treatment for patients with end-stage organ failure. Patients
who receive transplants have a high expectancy of a normal life followmg the surgery.
3
CHAPTER II
THE NATIONAL TRANSPLANT SYSTEM
Background
Today's system of organ transplantation has been shaped by many events. Since
the 1970's many legislative acts have helped to put the current system in place. The
system structure begins at the national level with the U.S. Department of Health and
Human Services (DHHS). Under this department falls the Health Resources and Services
Administration (HRSA), which contains the Division of Organ Transplantation (DOT).
In 1984, the National Organ Transplant Act (Public Law 98-507) established the national
Organ Procurement and Transplantation Network (OPTN) and the Scientific Registry,
both administered by the DOT. The United Network for Organ Sharing, or UNOS, has
been under contract (with oversight from the government) to operate both the OPTN and
the Scientific Registry since September 1986 and 1987, respectively (Gaedeke, 1996).
UNOS
The United Network for Organ Sharing is a private, not-for-profit charitable
membership organization that includes every transplant program, organ procurement
organization, and tissue typing laboratory in the United States, as well as the general
public. According to the official UNOS Website, (UNOS, 2000) UNOS services include:
• Through the Organ Center, UNOS manages the national transplant waiting list, matching donors to recipients 24 hours a day, 365 days a year.
• UNOS monitors every organ match to ensure adherence to UNOS policy • UNOS members work together to develop equitable policies that maXImize
the limited supply of organs and give all patients a fair chance at receivmg the
4
• •
•
organ they need -- regardless of age, sex, race, lifestyle, financial or octal status. UN S sets professional standards for efficienc_ and quality pattent care. UNOS mamtains the database that contai ns all clinical transplant data. The e
data are used to improve the medicine and science of transplantation, de elop organ allocation policy, aid scientific research and support transplant professionals in caring for patients . UNOS raises public awareness about the importance of organ donation and works to keep patients informed about transplant issues and polic .
Across the nation UNOS is divided into 1 1 geographic regions and 62 local
regions, which vary widely i.n population density (Transplant, 1999). For example, Texas
and Oklahoma make up one of the 11 geographic regions (Figure 1). This region is then
divided into four local regions, three of which are in Texas. Each local region is erviced
by a different Organ Procurement Organization (OPO). The three OPOs in Texas include:
Southwest Transplant Alliance, LifeGift Organ Donation Center, and Texas Organ
Sharing Alliance (Figure 2).
, , 0 o~
()
Figure I : UNOS Regional Map
Source: UNOS (2000). Retrie ed October 29, 2000, from the World Wide Web: http://www. unos. org
5
Figure 2 : Texas OPO Service Area
Source: UNOS (2000). Retrieved October 29 2000. from the World Wide We http://v ..... w\ . unos.org
6
CHAPTER III
THE BUSINESS OF ORGAN PROCUREMENT CENTERS
What is an OPO
Organ Procurement Organizations are independent, non-profit programs, serving
hospitals and patients. They serve as the official link between the people whose survival
depends on a new organ, and those who have the potential to save this life by becoming
donors. The two major functions of OPOs are to coordinate the actual donation process
and to educate the public.
The Donation Process
Referral
The first step in the donation process is to refer potential donors to the Organ
Procurement Organization. However, recent estimates indicate that 27% of medically
suitable organ donors are never recognized as potential donors (Gortmaker, 1999). To
combat this alarming statistic, a Federal ruling was made by the department of Health and
Human Services Health Care Financing Administration. As of August 21, 1998, all
hospitals are required to call the local Organ Procurement Organization in a timely
manner concerning any person who dies or whose death is imminent in the hospital
(Department,1998). Then the OPO determines whether or not the person is medically
suitable for donation. The potential organ donor is brain dead, meaning he or she has
experienced '"irreversible cessation of all functions of the entire brain, including the
brainstem," (Guidelines, 1981, p. 2184). However, the potential donor is still connected
7
to a mechanical ventilator, which supplies oxygen to the organs. Even under these
conditions, some potential donors would not be eligible, such as a person with HIV or
cancer.
Consent
It is now the responsibility of the OPO to approach the family for consent. The
manner in which this is handled is very important. This is the main stage in the donation
process where donors are lost. A number of characteristics are needed in the person who
is requesting donation. Figure 3 lists the minimal skills or traits required.
~ A beliefthat donation is beneficial to the donor family
./ Knowledge of the neurological criteria for death declaration (i.e., brain death)
./ Experience and time to work with families in the acute stage of loss
./ Knowledge of the organ and tissue donation process
~-------------------------------------------
~ A personal commitment to donation
Figure 3: Minimal skills or traits required for persons responsible for approaching family members of potential organ donors to request donation.
Source: Ehrle, R. N., Shafer, T. J., & Nelson, K. R. (1999). Referral, request, and consent for organ donation: Best practice-a blueprint for success. Critical Care Nurse, 19, 21-33.
Procurement
Once a family has given consent for donation, the process for organ removal,
preservation, and distribution begins. The donor is maintained on a ventilator, stabilized
with fluids and medications, and evaluated by laboratory tests. The information is passed
8
from the OPO to the UNOS registry, where potential recipients are identitied. The OPO
then coordinates the surgical teams from the recipient hospitals for arrival at the donor
hospital for removal of the organs and tissues. When the surgical teams arrive, the donor
is brought to the operating room where organ recovery begins. The organ procurement
coordinator provides special solutions and cold packing for preservation of the organs.
Preservation is vital to organ usability, and each organ has an accepted preservation time
limit (Table 2). After recovery, the donor body is reconstructed and surgically closed,
and then released to the funeral home.
Table 2: Organ Preservation Time Limits
Preservation Organ
Time Limits
Kidney 48 - 72 hours
Liver 24 - 30 hours
Heart 4 - 6 hours
Lung 4 - 6 hours
Pancreas 24 hours
Source: Park, M. A. H. (1996). Nursing Care of the Potential Donor. Donation and Transplantation: Nursing Curriculum. Richmond: UNOS.
Education
The second major function of the Organ Procurement Organization is education.
This includes educating both the general public as well as medical professionals. Each
Procurement Organization is responsible for its geographic area.
9
General Public
There are a wide variety of programs, functions, and presentations in existence
with the aim of increasing donor awareness in the general public. There are no set rules
or fonnats, but instead, the OPO decides what works best for the community of people
they serve. Some common examples of general education forms include: presentations
at PTA's, Civic Clubs, church groups, youth groups, schools, retired teacher groups, and
booths at Health Fairs or other local Health Awareness projects.
Medical Professionals
Research has shown that training of critical care physicians and nurses in effective
procedures for requesting organ donation is significantly associated with higher rates of
organ donation (Evanisko, 1998). Across the country, the Organ Procurement
Organizations are responsible for providing infonnation to health care professionals in
order to assure accurate knowledge and understanding of the organ donation process. The
Federal ruling made in 1998 by the department of Health and Human Services Health
Care Financing Administration also tried to ensure that "only OPO representatives or
trained individuals will approach families to explain their donation options and make the
actual request for donation," (Department, 1998, p. 33861). Even so, it is still important
that all health care providers possess correct information concerning donation in order to
help explain the process, answer questions, and console the families of possible donors.
Often, the OPO will put on programs interacting with the nursing staff at hospitals, as
well as make annual or semi-annual visits to hospitals for further training and updates.
10
CHAPTER IV
THE TRANSPLANT RECIPIENT
When a person has end-stage organ failure, they may possibly be candidates for
an organ transplant. The determination is based on evaluation by a transplant center. as
well as a personal decision. If the patient joins the waiting list, the road to a new organ
begins.
Initial Evaluation
When referred to a transplant program, a patient undergoes an initial evaluation
process. The specific process may vary with program and organ, but generally this
evaluation will include a patient history, physical examinations (this includes both tests
of the failing organ as well as tests on other organ systems), and psychological and
psychosocial evaluations. Another important part of this initial process is education of
the patient and the family. The decision to have an organ transplant is a personal one,
and requires a lifelong commitment to the process, thus understanding is crucial before
proceeding. There are also varying indications and contraindications for transplantation.
depending on the organ. Each patient is evaluated on a personal basis and if one is ruled
out for a transplant, the decision is done so due to a number of conditions.
Indications
A patient with irreversible, end-stage organ disease, usually after finding other
medical and/or surgical interventions are not working, may be considered a candidate.
II
The possible diagnoses list for this situation would be quite long. but the following
presents some of the indications and example diseases for each organ (Chabalewski,
1996).
Kidney: metabolic disorders (e.g., diabetes mellitus), connective tissue disorders
(e.g .• Lupus), inflammatory disease, and congenital or hereditary disorders
Liver: acute liver diseases (e.g., viral hepatitis), and most commonly, chronic liver
disease, specifically cirrhosis
Heart: coronary artery disease, congenital heart disease, and cardiomyopathy
Lung: infectious lung disease (e.g., cystic fibrosis), obstructive lung disease (e.g.,
smoking related emphysema), restrictive lung disease, and pulmonary vascular
disease
Pancreas: Type I diabetes mellitus
Contraindications
In general, a patient with an active infection or any systematic disease,
autoimmune disease, or malignancy that limits survival might be considered as having
contraindications to transplantation. Other contraindications might include psychiatric
instability. lack of social support system, and/or noncompliance with medication and
treatment regimens.
12
Financial Concerns
The cost of transplantation can add up quickly. Each type of organ has It'S own
set of costs that come with it. Each patient, though, can probably expect the following
medical and non-medical costs, as listed on the UNOS website (UNOS, 2000).
Medical Costs • Pre-transplant evaluation and testing • The hospital stay and surgery • Additional hospital stays for complications • Follow-up care and testing • Anti-rejection and other drugs, which can easily exceed $8,500 per year • Fees for surgeons, physicians, radiologist and anesthesiologist • Fees for the recovery (procurement) of the organ from the donor • Physical, occupational, and vocational rehabilitation • Insurance deductibles and co-payments
Non-medical Costs • Transportation to and from the transplant center, before and after the
transplant • Food, lodging, long distance phone calls for the patient and family • Child care • Lost wages if employer does not pay for the time the recipient or a family
member spends away from work • If the transplant center is not near the patient's home, lodging near the center
may be necessary both before and after the transplant • Arrangements for travel to the transplant center, maybe including air travel.
Financing the Transplant
Most transplant recipients rely on a number of sources to cover the huge cost
associated with the surgery. Some of the common sources utilized for funding include
insurance, Medicare and Medicaid. Each of these will have ditTerent rules and
regulations concerning transplantation, and may vary widely depending on coverage, type
of transplant, or specific situations. Another common source of financial support often
13
comes from fundraising campaigns. Local merchants, friends, religious organizations,
and community clubs often help individuals raise support for a transplant.
The Wait
After undergoing evaluation and understanding the process and commitment
required, if a patient decides to proceed with the transplant process, he or she is placed on
the national waiting list. This period of waiting has been described as the most difficult
of the entire transplant process (Christopherson, 1987). Many patients on the waiting list
wait at home, but must have established reliable links of communicatIOn with the
transplant center. Often a potential recipient is given a beeper or cellular phone used for
contact at any time for when the life-saving organ becomes available. As pointed out in
Table 2, time is crucial in transplantation. If the transplant center cannot be traveled to in
the appropriate time limit, patients may be required to move closer to the center while
waiting. If critically ill, the patient may be cared for at the hospital while on the waiting
list.
The patient may be given various precautions to insure optimal conditions at the
time of transplant. These could include a special diet, exercise program, and always
involve routine monitoring, either personally or through regular doctor visits. The patient
may also be encouraged to visit transplant support groups if available or other social
support services due to the psychological stress often involved with this time.
Different patients will have very different waiting times. This is often
misunderstood. but there are many factors that can determine the length of time spent
waiting for an organ. Common factors of most transplants include blood type, medical
14
urgency, time spent on waiting list, distance between donor and recipient, and the size of
the organ donor. The time also varies due to the type of organ and the number of donors
in the local area. Also it is important to remember that some patients are sicker when
placed on the waiting list, and some patients get sicker faster than others do. The national
system is aimed at allocating organs in a fair, medically sound manner, so patients on the
waiting list must trust that the system will work.
Organ Allocation
When a donor becomes available a list of criteria must be met before the organ is
offered to a potential recipient. Each organ has different policies in place, which govern
the allocation system. These are set up by UNOS and must be closely adhered to. Organ
sharing policies are ever evolving, but the following are some of the considerations made
for each organ to determine which patient will be otfered the organ.
Kidney
Results from blood work are critical determining factors in kidney transplantation.
The donor-recipient blood types must be compatible. Other than actual ABO blood type,
antigens and antibodies formed in the blood are also a factor, as the recipient may have
antibodies formed against antigens found on the donor kidney, giving rise to a greater
chance of rejection. Evaluation of these two factors is followed by a compliance with a
point system. For kidneys, points are given based on the following criteria: time waiting,
level of antigen mismatch, and for the local area, medical urgency is considered. The
kidney is offered to the patient with the most points first in the local service area, and
15
then, if no match is found, it is offered to the patient with the highest points tn the
regional area.
For the liver recipient, a match in size ofthe potential organ is a critical factor.
"In general, the difference (plus or minus) between the donor and recipient weights
should not exceed 20% of the recipient's weight," (Smith, 1996, p. 253). This is the first
factor considered and the pool of patients evaluated for the available organ includes only
those considered to match in size. The liver offer also involves a point system as well as
a divisional code or status level corresponding to the degree of medical urgency. Within
these status levels the points are assigned according to a number of factors. Blood typing
is again critical, and the ideal situation provides an identical donor-recipient blood type
match, so points for similar typing are given. Other factors include waiting time points as
well as medical need points. There is a scoring system in place that assesses the seventy
of the liver disease in order to assign these points. There are rules in place that govern
the order the organ is offered, but it generally follows the most needy patients locally.
regionally, and then nationally.
Because the preservation time limit for the heart is so small (4-6 hours), the
geographic location of the potential recipient is important. The organ is usually offered
locally first, then within 500 miles concentrically of the donor hospital, then 1000 miles,
then beyond 1000 miles. Within these geographic locations, allocation is based on such
16
factors as patient status or medical urgency, blood type and organ size compatibility. and
the length of time on the waiting list.
The lung preservation time limit is the same as that of the heat, so it also follows
the geographic zones set up above. All potential lung recipients are considered to have
the same status. The two main factors used to award an organ are blood type and patient
size. The blood type is important to successful transplantation, so it is offered to a person
with an identical blood type match before a person with only a compatible match. The
size of the person is considered more by height than by weight.
Pancreas
The pancreas recipient is chosen based on two factors: the number of antigen
mismatches (the lower the number the better chance of organ survival), and length of
time waiting. The organ is offered again locally, then regionally, then nationally.
After Transplantation
Following this major surgery, patient and family adjustments must be made.
Immunosuppression is very important to prevent the recipient's body from rejecting the
donor organ as a "foreign invader." This probably includes a three-part treatment
consisting of cyclosporine, azathioprine, and prednisone. Although some precautionary
procedures may be advised initially (as with any major surgery), the transplant recipient
win most likely be able to return to a normal lifestyle, with a much greater quality of life
17
than prior to transplantation . Doctor visits and annual checkups ma till b required.
The new gift of life is most often considered greater than the tim or mone_ pent canng
for the recipient or adjusting to the new lifestyle. The urvi al rate for m t r cipt nt
are very high, as seen in Figure 4.
,------
100.0
80 .0
60.0
40.0
20.0
0.0 Cadaveric
Living Donor Donor Liver Heart Lung Pancreas
Kidney Kidney
IIlIYr 94.4 97 .8 87.5 85 .7 75 .1 966
1113 Yr 88.6 94 .6 78.9 76.7 579 872
05 Yr 81.6 91.0 73 .9 69.5 44. 1 82 .7
[iii Yr III] Yr 05 Yr I
Figure 4: Patient Survival Rates at One, Three, and Fi e Years
Notes: A. 1 Year survival rates are ba ed on the number of tran plant in 1996-\ 97 for which a survival time could be determined
B. 3 and 5 Year survival rates are based on the overall number oftran plants from January 1989 through December 1997 for which a urvi al tim could determined.
Source: UNOS Scientific Registry Data a of September 7 199 . UNO (2000). Retrieved October 28 2000, from the World Wide Web' http://wv w.unos.org
18
HAPT R V
THE OF R R A 0
After gaining a general understanding of the basic forgan d natl n th natl nal
y tern that 0 er ee tran plantation, and learning the rol nt
organization pIa ,a well as eeing what i in I ed in re mg an rgan tran plant
there is one other ery important factor that need to b addr d Ther I a huge rgan
shortage. This chapter erves to pro id a stark ri ntatl n to thi gr at n d thr ugh
statistic .
The tremendou gap that exi ts between the number of organ d n r per _ ear and
th number of peopJ waiting for a life- aving transplant is growing. The follov .. mg
graph (Figure 5) c1earl illustrates this har h reality.
... - .... - .. - -~
• a r
r • Wailing LI tat
- - - a d a \ e ric r g a n
car' : nd
Don 0 r
Figur 5: umb r f pati nt n waiting Ii t . numb r f d nor
urc o . R tri d t ber 29 20 ,fr rn the W rid Wid eb ' http:// .un . rg
19
Another tartling tati tic i een when e amimng th numb r fpatlent n the
waiting li t who die annually (Table 3). Th d aths might ha b n pr " nt d h d
omeone cho en to gi e the gift of life thr ugh rgan donatl n
Table 3: Annual Death of Patients on ational Waitmg LI t
Total Kidne Li er
Heart- Kldn »- I Death Heart Lung Pancr a Lung Pan re
1989 1663 757 283 517 38 21 74 na
1990 1956 928 313 614 50 19 66 na 1991 2351 987 437 780 137 36 41 na 1992 2572 1059 495 780 218 34 43 14 1993 2896 1296 562 762 251 ') 51 ;9
1994 3038 1370 657 724 285 47 70 1995 3410 1511 799 769 341 3 28 84 1996 3893 1817 956 745 387 3 I I
1997 4298 2013 1129 773 409 II 7 LI
1998 4860 2307 1317 768 485 9 4_ 9""
Note: The Kidney-Pancreas waiting list did not begin until 1992
ource: 1999 Annual Report of the U.S. cientific Regi try fTran plant RecipIent and the Organ Procurement and Transplantation Network: Tran plant Data 1 1998. (2000, February 21). Rockville, MO and Richmond, V HH IHRSAlO PfDOT and UNO . Retrie ed ctober ~8, _ fr m th W rid Wide Web: http://www.unos.orgiOataJanrpt_main.htm
To give an example of the meaning of the e numb r , the 1 9 tigur WIll
amined (1 99 Annual R port, 2000):
.:. 5,802 cada eric organ don r
.:. 20, 989 liii - a ing tran plant
.:. 64,373 people r mained n the \i aiting Ii t
ople di d while waiting
Th organ d nati n ar need d t h Ip ave 11\
CHAPTER VI
INCREASING ORGAN OONA TION RATES
There are many ways to increase organ donation rates. Awareness of these
methods needs to be increased to insure more lives are not lost due to non-donation.
Requesting Organ Donation
When the time arises to request organ donation from family members, it has been
found that consent rates increase by 47% when all three of the following elements are In
place (Dejong, 1998).
Time
It is important that the family is given time to assure the understanding of brain
death and to accept the family member's death. Separating the notification of death and
the request for organ donation is also an important timing factor. Another study found
the following consent rates concerning these two factors (Cutler, 1993).
¢ 60% when discussed before notification of death
¢ 68% when discussed simultaneously with notification of death
¢ 78% when discussed after notification of death
Joint Request
Consent rates can also be increased when the request is made jointly by the OPO
and the hospital staff. The OPO coordinator should make the formal request, but the
21
presence of the hospital statT at the time of request is very important. One study that
supports this found the following rates (Klieger, 1994).
~ 9% when approached by the hospital statT alone
~ 67% when approached by the OPO coordinator alone
~ 75% when approached by the OPO coordinator and hospital statTtogether
Setting
The setting in which the request for donation is made can also mfluence consent
rates. Making the request for organ donation in a hallway or waiting room can be
distracting or more stressful to the family. Instead, the use of a quiet, private setting
should be used when discussing the family's donation options.
Dispelling the Myths
There are many myths or misunderstandings concerning the process of organ
donation and transplantation. The circulation of these myths can cause much harm
because they often affect people's decisions concerning organ donation. This means
lives that could have been saved are lost due to non-donation simply because of lack of
understanding. Lack of understanding should not be the determining factor in whether or
not donation is chosen, but sadly, this is often the case. If these m)1hs and
misconceptions of the organ transplant process could be dispelled, donation numbers
would certainly increase. Following are some of the common myths along with the truth
concerning them.
22
Money for Organs
Many people have heard the story of the man who woke up I n the bathtub of ice
and found his kidneys stolen, heard stories of babies being killed for theIr organs. or
heard of people selling their own organs. AlI of these are absolutely false. It is illegal to
buy or sell organs in the United States. The 1984 National Organ and Transplant Act
(Public Law 98-507) prohibits the buying or selling of organs, and the offense is
punishable by a fine and imprisonment. Another reason these stories have no merit IS due
to the complexity ofthe transplant system. As described in Chapter IV, the process of
matching donors with recipients, along with the need for complex medical tests, facilities,
and skills in order to both harvest donated organs and transplant organs into recipients
make it virtually impossible to do in secret.
Brain Death is Final
Many people have a misunderstanding of the term brain death. Death occurs two
ways: 1) when the heart and lungs stop functioning, and 2) when the brain stops
functioning. A person may be resuscitated through medical means in the tirst instance,
but brain death is irreversible. Although the brain has died, other organs and tissues can
function for a short time if supported by artificial mechanical means, often referred to as
life support. This can often confuse family members, because it may seem there is still a
chance at life. However, once brain death has been determined, this "life support" is
merely sustaining the body's other organs and tissues, and no real life exists.
23
Funeral Arrangements
A number of concerns or misunderstandings also exist concerning the person's
funeral. One common belief is that donation will disfigure and mutilate the body. so an
open casket funeral could not take place. This too is false. The removal of organs from a
donor's body is done in the same was as routine operations on living people. Once the
organs have been removed, the body is sewn up and the procedure does not change the
way someone looks in the casket. A normal funeral service may be held. It is also
important to know that consenting to donation does not delay the funeral arrangements in
any way or add to the cost. (The donor family pays nothing for donation-these fees are
covered by the OPO and recipients).
Preferential Treatment and Discrimination
The myth that the rich or famous people receive preferential treatment has mainly
been perpetuated by the media, but is not true. The process of allocating the \ anous
organs was described in Chapter IV, and these policies are always followed. The system
matches organ donors with the most medically suitable recipient. Patients are not listed
on the waiting list by name, and there are no points for factors such as income, celebrity
status, gender, age, or race.
The thought that the distribution of organs is discriminatory towards minority
families is also common, but false. For example, in 1997. although African Americans
made up 12% of the national population, and 11.400 of the kidney donors, this populatIOn
received 27.2% of the cadaveric kidneys donated (1999 Annual Report, 2000). Again it
is important to note that the polices in place are aimed at providing the best match for the
24
organ donor. It is true however, that better matches may be found \\ Ithin someone' s O\\TI
race or ethnic group because they are usually more genetically SImilar This means that It
is even more important to increase minority donors so that the best match can he made
Lifesaving Efforts
Another concern of many people is that if the medical team knows the~ wish to be
a donor, then all lifesaving efforts may not be used. This contlict, however, does not
exist. The medical team treating a patient is there to save the life in front of them. The
consideration of donation does not arise until all lifesaving efforts have failed and brain
death has been determined. The medical team treating a patient is completely separate
from the transplant team.
Illness or Age
Many people assume that a history of medical illness means donatIOn is not an
option. Others think that advanced age may eliminate the chance of becoming a donor
However, at the time of death, qualified medical personnel will revie\\ medical and social
histories to determine if a patient would be a suitable donor. Age limits do not exist:
rather physical condition is the determinant. With medical advances, more and more
people are able to be donors, and cases are reviewed individually
Religion
When asked about the possibility of donation, many families may "onder whether
their religion supports this process. Because of uncertainty. people may choose not to
donate. Thus, it is important to know that most maJor religIOUS groups support organ
donation and consider it an act of charity and an expression of love.
Drivers Licenses, Donor Cards, and Wills
People who do desire to become organ donors If the possiblht~ anses often think
that indication on a driver's license, donor card, or in their will is enough. ThIs is a very
common misconception. Organs will only be donated if the family gives consent at the
time of death. Although these indications of personal wishes may make the decision
easier for the family, they alone do not mean that organs will be donated It is entirel~ up
to the family, even if you have indicated you wish to be a donor and they sa~ no to
donation-their decision is honored.
A wareness Projects
Many projects have been organized in the hope of increasing understanding and
awareness of the organ donation process, thereby increasing the number of organ donors.
The more support given to these projects and more widespread their participation and
presentation, the more h\es can be saved.
National Organ and Tissue Donor Awareness Week (NOTDA W) is held annually
the third week in April. Congress established NOTDA W In 19Sh to pay trihute to organ
and tissue donors and to focus the nation's attention on the shortage of available organs
and tissues for transplant. There are many ways to participate in NOTDA W For
example, transplant recipient hTfOUPS may put up displays at public buildings. donor
awareness walk/runs may be held, bTfOUPS may sponsor donor recognition remembrance
ceremonies or other events to honor those who have gi\cn the gift of life, and news
stories and proclamations by public officials arc often made. This \\eek is used by
communities nationwide to help spread the word about the need for organ donation.
In 1992, UNOS founded the Coalition on Donation to educate the public about
organ and tissue donation, correct misconceptions about donation and create a greater
willingness to donate. The Coalition is a nonprofit alliance of 49 national organizatIOns
and 49 local coalitions. The Coalition's goal is to ensure that every person in the US
understands the need for organ and tissue donation and accepts donation as a fundamental
human responsibility. Since its inception, the Coalition has developed a public education
campaign that has among other things, included a number of public service
announcements aired on television.
A national effort to encourage Americans to start a new tradition on Thanksgl\ ing
Day was introduced with Senate Resolution 225 on November 19, 1999. This designates
Thanksgiving Day as a day to --Give Thanks, Give Life" and to discuss organ and tissue
donation with other family members so that informed decisions can be made if the
occasion to donate arises. This year the National Football League (NFL) is teaming up
with this campaign as well and will be promoting donation awareness at NFL games
during Thanksgiving week.
Also in November is National Donor Sabbath, an initiati\e of the U.S
Department of Health and Human Services. This is an etTort to encourage churches
27
across the country to inform their congregations of the critical need for organs and to
repeat the needed message to make a decision to become an organ donor and to talJ... to
their families about their decision. This day is seen as a statement of commitment to life
Many foundations have also been set up around the county with the aim of
increasing public awareness. These are often set up in the name of someone who
received an organ transplant. The goal of these foundations is often to increase
awareness by printing and distributing donor cards that include facts about
transplantation. One such foundation was set up in 1995 in the name of Mickey Mantle,
the Hall of Farner and celebrated player for the New York Yankees in the 1950's and
60's. He was the recipient of a liver transplant before he died of cancer. His family as
well as many vol unteers have passed out donor cards at major league baseball games and
also work to provide education and funding for transplantation. Another foundation also
linked to a well-known name is the Lisa Landry Childress Foundation. Daughter of
former Dallas Cowboys coach Tom Landry, she was also a transplant recipient. This
foundation works hard at education through distribution of a curriculum set up to be
taught to 4th graders that explains organ donation.
These are just a few of the awareness projects set up. Many local organtzations
across the country also aid in the effort of awareness through booths, speaking
arrangements, and donor card distributions. The possibilities are endless, but all ha\e one
goal: to increase organ and tissue donation.
28
Conclusion
Organ Transplantation is a medical field that is ever growing and
changing. Many advances have been made since the first dreams of transplanting an
organ became a reality. Some think the process is too complicated to understand. or stIli
exists in only an "experimental" stage. The previous chapters have shown clearly that
this is not the case. It is a field that saves lives. Just like any endeavor though, \\ ithout
enough inputs, the outputs cannot reach their potential.
Organ transplantation works. There are doctors with skills to transplant organs.
There are nurses who know how to care for the patients. There are drugs to provide
continued health following the transplant. There are Organ Procurement Organizations in
place to facilitate the process, along with ever evolving policies that detine the allocation
system in as fair a manner as currently seen possible. There are foundations to encourage
awareness, certain days set aside by the national government to promote donation, and
donor cards for people to sign. Most importantly there are people who need transplants
in order to live. Every 14 minutes a new name is added to the waitIng list. and 16 of
these people die a day because one important input to this system is missing: enough
organ donors (UNOS, 2000).
Life can follow death. This is seen through this amazing process of organ
transplantation, but the donations must be made for this miracle to become a reality_
BIBLIOGRAPHY
1999 Annual Report of the U.S. Scientific Registry of Transplant Recipients and the Organ Procurement and Transplantation Network: Transplant Data 1989-1998. (2000, February 21). Rockville, MD and Richmond, VA: HHS/HRSAOSP DOT and UNOS. Retrieved October 28,2000 from the World Wide Web: http://www.unos.orglDatalanrpt_main.htm
Burton, D., (1992). Cyclosporine: Medicine's magic bullet. Encore, 2, 5-7.
Chabalewski, F (Ed.). (1996). Donation and transplantation: Nursing curriculum. Richmond: UNOS.
Christopherson, L. K. (1987). Cardiac transplantation: A psychological perspective. Circulation, 75, 57-62.
Cutler, J. A., et al. (1993). Increasing the availability of cadaveric organs for transplantation: Maximizing the consent rate. Transplantation, 56 (I ), 225-228.
Dejong, W., & Franz, H. G. (1998). Requesting organ donation: An interview study of donor and nondonor families. American Journal of Critical Care, 7, 13-23
Department of Health and Human Services, Health Care Financing Administration, Medicare and Medicaid Programs~ Hospital Conditions of Participation: Identification of Potential Organ, Tissue and eye Donors and Transplant Hospitals' Provision of Transplant-Related Data. Final Rule. 63 Federal Register 119 (1998). (Codified as 42 CFR 482).
Ehrle, R. N., Shafer, T. J., & Nelson, K. R. (1999). Referral, request, and consent for organ donation: Best practice-a blueprint for success. Critical Care Nurse, 19, 21-33.
Evanisko, M. J., Beasley, C. L., & Brigham, L. E. (1998). Readiness of critical care physicians and nurses to handle requests for organ donation. American Journal of Critical Care, 7,4-12.
Gaedeke, M. K. (1996). The national transplant system. Donation and Transplantation: Nursing Curriculum. Richmond: UNOS.
Gortmaker, S. L., Beasley, C. L., & Brigham, L. E. (1996). Organ donor potential and performance: size and nature of the organ donor shortfall. Critical Care Medicine, 24, 432-439.
30
BIBLIOGRAPHY
1999 Annual Report of the U.S. Scientific Registry of Transplant Recipients and the Organ Procurement and Transplantation Network: Transplant Data 1989-1998. (2000, February 21). Rockville, MD and Richmond, VA: HHSIHRSAJOSP OOT and UNOS. Retrieved October 28,2000 from the World Wide Web: http://www.unos.org/Data/anrpt_main.htm
Burton, D., (1992). Cyclosporine: Medicine's magic bul1et. Encore, 2, 5-7
Chabalewski, F. (Ed.). (1996). Donation and transplantation: Nursing curriculum. Richmond: UNOS.
Christopherson, L. K. (1987). Cardiac transplantation: A psychological perspective Circulation, 75, 57-62.
Cutler, J. A., et al. (1993). Increasing the availability of cadaveric organs for transplantation: Maximizing the consent rate. Transplantation, 56 (1 ), 225-228.
Dejong, W., & Franz, H. G. (1998). Requesting organ donation: An interview study of donor and nondonor families. American Journal of Critical Care, 7, 13-23
Department of Health and Human Services, Health Care Financing Administration, Medicare and Medicaid Programs; Hospital Conditions of Participation; Identification of Potential Organ, Tissue and eye Donors and Transplant Hospitals' Provision of Transplant-Related Data. Final Rule. 63 Federal Register 119 (1998). (Codified as 42 CFR 482).
Ehrle, R. N., Shafer, T J., & Nelson, K. R. (1999). Referral, request, and consent for organ donation: Best practice-a blueprint for success. Critical Care Nurse, 19, 21-33.
Evanisko, M. 1., Beasley, C. L., & Brigham, L. E. (1998). Readiness of critical care physicians and nurses to handle requests for organ donation. American Journal of Critical Care, 7,4-12.
Gaedeke, M. K. (1996). The national transplant system. Donation and Transplantation: Nursing Curriculum. Richmond: UNOS.
Gortmaker, S. L., Beasley, C. L., & Brigham, L. E. (1996). Organ donor potential and performance: size and nature of the organ donor shortfall. Critical Care Medicine, 24, 432-439.
30
Guidelines for the detennination of death: report of the medical consultants on the diagnosis of death to the President's Commission for the Stud~ of Ethical Problems in Medicine and Biomedical and Behavioral Research. (1981) Journal of the American Medical Association, 246, 2184-2196.
Klieger, J., Nelson, K., Davis, R, et al (1994) Analysis of factors mfluencing organ donation consent rates. Journal of Transplant Coordination, 4, 132-134
Maier, F. (1991). Sweet reprieve: One couple's journey to the frontiers of medicine. New York: Crown Publishers, Inc.
Park, M. A. H. (1996). Nursing care of the potential donor. Donation and Transplantation: Nursing Curriculum. Richmond: UNOS.
Smith, S. L., & Dittrich, V S. (1996). Nursing care of the liver transplant recipIent. Donation and Transplantation: Nursing Curriculum. Richmond: UNOS.
Transplant program due for an overhaul. (1999, November 17). Austin AmericanStatesman, p. A 7.
UNOS (2000). Retrieved October 29,2000, from the World Wide Web: http://www.unos.org
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