For many readers, this may be your
introduction to Progress Notes, a result of our commitment to reaching more
people who share our mission of increasing organ donation. For those who
know us, an update may still be in order. Progress Notes is published by
The Partnership for Organ Donation, an independent, non-profit organization
dedicated to resolving the chronic shortage of organs for transplantation.
This issue of Progress Notes will reach 6,000 medical professionals, organ
procurement experts, government policy-makers and concerned members of the
public.
Five years ago, when The Partnership was established, we believed our
insights about the organ donation process could make a profound difference
to families faced with donation and to the 21,000 people then waiting for a
transplant. Today, over 43,000 candidates are awaiting transplants,
intensifying the challenge. However, we are now very sure that the basic
tools to greatly alleviate the shortage are in hand. All we need to do is
apply them.
With the help of organ procurement organizations, hospital staff, advisors,
and a team of researchers from the Harvard School of Public Health, we have
tested several key strategies--focusing on the largest hospitals with the
greatest donor potential; diagnosing and tracking performance; identifying
the components of a high-quality request process; bringing consistency to
the donation request process; and helping hospitals and OPOs build stronger
systems for donation by establishing expert donation teams.
The findings are clear. The donation process can be fixed, resulting in
substantially higher levels of donation. Today, the question is how to
harness the energy and commitment required to put these strategies into
practice.
Last June, we sponsored a conference called "Joining Forces: A Meeting of
Transplant Leaders to Increase Organ Donation." (See Progress Notes, Summer 1995 for more on this
conference.) The purpose was to catalyze active collaboration among the
major institutional stakeholders in transplantation--transplant centers,
businesses that serve the transplant market, organ procurement
organizations and other national organizations working on this issue. The
conference reflected our conviction that we must work together, building
upon a common foundation of knowledge and with a common sense of purpose,
to improve the entire system.
As we share our tools and methods with the larger community, we are
learning that their value extends far beyond our original expectations.
Recently we have been exchanging knowledge and tools internationally. We
have studied the Spanish system and have learned that our strategies match
closely with the Spanish model, which has led to the highest level of
donation in Europe. The Spanish experience shows what can be accomplished
with a commitment to improving donation throughout an entire health care
system.
In this issue of Progress Notes we highlight concrete examples of
collaboration--across institutions, between competitors, across regional
and national boundaries:
A first-of-its-kind collaboration among leading and often competing health
care providers is underway in Baltimore. Johns Hopkins Hospital, the University of Maryland Medical System and The Transplant
Resource Center of Maryland (TRC) have joined forces with The Partnership
to address the increasing need for transplantable organs and tissues
throughout the state. Together, they are creating a model that can be
replicated throughout the nation in metropolitan areas where more than one
transplant center competes for the shared donor pool.
"This is the first time two such eminent institutions and an OPO have
collaborated with The Partnership to resolve an issue that is facing almost
every hospital," says Susan Wolfe, Project Manager. "The success of this
Baltimore collaboration will serve as a role model for similar programs
nationwide."
More than 1,300 patients are waiting for organs at Baltimore transplant
hospitals, while nationally, more than 43,000 patients are on transplant
waiting lists. Holly Franz, R.N., Manager of Site Education, calls the
collaboration "a real step forward. The organ pool is shared, so
initiatives to increase organ donation also have to be shared. Hospitals
need to play an active role, and Baltimore is leading the way."
The Baltimore project was launched in September, 1995. Diagnosis has been
completed and shows that, similar to hospitals across the country, there
are opportunities to improve both the identification of potential donors
and the request process itself. Hospital staff perceive a need for more
consistency and clearer roles in organ donation. At each hospital, a
Donation Committee is being convened with responsibilities for:
establishing a donation infrastructure, recruiting an in-hospital donation
team, launching a new protocol and monitoring the results.
The Partnership's team brings a wealth of experience, expertise and
enthusiasm to this project. Wolfe has been involved in Partnership site
work for several years, most recently at the University of Texas Medical
Branch in Galveston. "The most striking difference here is that two
hospitals in the same region, as well as their OPO, are working together,"
she says.
One major goal of the project is to increase the rate of consent.
"Nationally, 85 percent of the population approves of the concept of organ
donation, but in practice only 52 percent of families of organ and tissue
donation candidates in Maryland last year agreed to donation," says Julie
Mull Strange, TRC Executive Director.
"We plan to implement consistent practices in Baltimore so that
communication can happen in a caring, sensitive manner that will result in
increases in the donation rates in these hospitals," says Wolfe.
People within the hospitals are enthusiastic about being involved in this
project. At Johns Hopkins Hospital, Elizabeth Dreesen, M.D., Director of
Trauma, is chairing the Donation Committee. "We decided to participate
because we believe we can improve our rate of donation," she says. "This
collaboration allows us to benefit from each other's experience."
The project will continue through May. At that time, according to Wolfe,
an infrastructure will be solidly in place in each hospital and sizable
increases in the donation rates are anticipated. In addition, the
protocols and communication models developed by this Baltimore
collaboration will result in procedures that other medical institutions can
apply.
"Our past work has built a foundation that we are expanding and promoting
elsewhere," says Michael J. Evanisko, Partnership Founder and President.
"In addition to what we're learning in these particular hospitals, we are
learning how to facilitate cooperation between hospitals--cooperation that
will benefit the people who are on transplant waiting lists. We are
building a model that we expect to go forward throughout the nation."
Donation professionals have long assumed that a family's understanding of
brain death and their perception of the overall quality of care in the
hospital may influence their decision about donating their loved one's
organs. Now there is solid research evidence, based on extensive
interviews with both donor and non-donor families, that quantifies these
assumptions and leads the way to improving consent rates.
In a recent study conducted by The Partnership and the Harvard School of
Public Health, family members were asked about their donation decision and
the events leading up to it. The 40-minute interviews, conducted four to
six months after the relative's death, covered topics that included the
discussion of the prognosis along the way, the communication of death,
where these conversations took place and how the family was treated.
"These findings underscore the role of the hospital in the donation
process," says Holly Franz, Partnership manager of site education. "We
found the results of these interviews provocative, and they have some
important implications for practice." She and William DeJong, Ph.D., of
Harvard presented the findings in December at the Division of
Transplantation (DOT), which partially funded the study.
"The study did not contradict common sense, but started to quantify the
process of donation," says Franz. The study reached 164 individuals--102
donor family members and 62 non-donor family members--who had made a
decision in 1994 about donating their relative's organs for
transplantation. It is the largest study of families who have declined
donation and the most systematic study of donor families to date.
One major finding was that many families are deeply confused about brain
death. Families who do not understand brain death are less likely to
donate their relative's organs. Although almost all who were interviewed
said they knew their relative was brain dead, 20 percent of the donor
families believed that it was possible for a person to recover from brain
death. The majority, 52 percent, of the non-donor families believed that
recovery is possible for a brain dead individual.
"This study showed that understanding brain death is a much bigger and
deeper problem than professionals realize," says Franz. "Many family
members could say 'brain death,' but a series of questions during the
interviews revealed that they don't really know what brain death means. It
appears that OPO and hospital staff do not know how to assess the family's
understanding of this concept."
Satisfaction with the hospital experience was a significant factor in the
family's decision. "Families who are more satisfied with the quality of
care are more likely to consent to donation," says Franz. The interviews
pointed out that the kind of quality to which families respond is very
basic and within the control of hospital and OPO staff. Issues that
contribute to satisfaction include: the hospital's communication of the
patient's condition; the degree to which staff answered their questions; an
adequate time with the patient before and after death; and whether the
family felt their relative received the best possible care.
Franz and DeJong found that satisfaction is a quantifiable relationship.
"This study is the first time that we have had real data to measure the
family's perception of care," says Franz. An index was created, summing
the responses to eight questions related to satisfaction. The higher the
sum, the more positive their experience in the hospital. Higher index
scores were significantly associated with higher rates of consent. When
families scored seven or eight, the donation rate was 64 percent. When the
score was less than seven, the donation rate dropped to 31 percent.
When respondents were asked to reflect on their decision, 94 percent of
donor families said they would make the same decision again. However, 34
percent of the non-donor families said they would make a different decision
today. "I think it is remarkable that this many non-donor families would
say that they made the wrong decision," says DeJong.
"The study's findings validate my own personal experience," says Maggie
Coolican, donor mother and chair of the National Donor Family Council, who
attended the DOT briefing. "The donor process begins with the incident
that causes death and continues throughout the aftercare during grieving.
We need to move away from thinking about the request alone."
As found in previous studies, demographics of the decision maker also play
a role. Families that did not consent to donation were more likely to have
an income of less than $35,000 per year (59 percent), to have been born
outside the U.S. (39 percent) or to be members of a minority group (61
percent).
Franz cautions that the study does not show direct causes for families'
decisions, but it does show strong correlations that can be useful in
hospital education programs. "No one can predict the decision of an
individual family. Therefore, the best possible treatment must be provided
to all," she says.
"We now know that a lot of families are not having their needs met in the
donation process," continues Franz. "We also found that a significant
number of non-donor families might have chosen differently given the
chance. With the information from this study, health care professionals
can improve their practices to address these needs. The evidence suggests
that more families will choose donation if their needs at the time of
crisis are met."
The acute shortage of organs and tissue suitable for transplantation has
inspired a number of controversial proposals to meet the need for suitable
organs. Among these is the call to establish financial incentives for
organ donation.
An article in the September 1995 issue of The Milbank Quarterly, a Journal
of Public Health and Health Care Policy, sheds light on the potential
impact of financial incentives, as well as other options for improving
donation, such as standardized hospital procedures and public education.
(See related October 1995 press release.)
The principal authors, William DeJong, Ph.D., of the Harvard School of
Public Health and Carol Beasley of The Partnership, believe that rushing to
enact financial incentives for potential donors or their relatives would
accomplish little, and might even discourage donation.
Results from a 1993 Gallup survey co-sponsored by The Partnership and Harvard show that
the vast majority of survey respondents (78 percent) said that financial
incentives would have no impact on their decision to donate a loved one's
organs. Another five percent said that incentives would make them less
likely to donate.
Pending opportunities to test the impact of financial incentives through
small, well-designed pilot programs, Beasley and DeJong emphasize the
pursuit of other, immediately beneficial, strategies. "Perhaps the most
important is a change in hospital procedures for approaching potential
donor families. Evidence continues to mount that hospitals can do much
more to increase the number of organ donors," Beasley says.
A recent study of medically suitable organ donors at 69 hospitals in four
geographic regions of the U.S., coordinated by The Partnership and Harvard,
found that donation occurred among only 33 percent of potential donors. In
10 percent of the reviewed cases, potential donors were not identified or
declared as brain dead. Families were not asked about donation in 17
percent of the cases, while families denied consent 36 percent of the time.
Similarly, where and when the donation request takes place and who is
involved can have a dramatic impact on rates of consent to donate.
The implications of this study, according to Beasley, are that hospitals
must have standardized procedures for identifying all potential donors, and
ensuring that all families of potential donors are asked about donation in
a manner that is sensitive to their needs.
"We believe that tapping into institutional incentives for improving organ
and tissue donation will have more immediate benefits than pursuing
financial incentives for individual families," Beasley says.
DeJong says that public education has a limited but vital role to play in
increasing organ donation. "The goal should be to favorably dispose
families toward donation so that they will grant consent."
But getting more people to sign donor cards, by itself, will do little to
close the donation gap. "What doctors rely on is the wishes expressed by a
patient's next of kin, whether that potential donor has a signed card or
not," says DeJong.
The Gallup survey underscored the importance of family discussion about
organ donation. Among the 69 percent of respondents who said they are
likely to donate, almost half had never communicated that wish to a member
of their family. Yet, an overwhelming majority of people (93 percent) said
they would be likely to donate a deceased family member's organs if he or
she had expressed this wish prior to death. There was no particular reason
for the absence of family discussion, other than it had never occurred to
people to talk about it.
"A key, then, is to find ways to encourage family discussion about organ
donation," says DeJong. This year up to 15,000 families could be
confronted with a decision about donating organs.
"Unfortunately, only a small minority will have previously talked to their
loved ones to learn their wishes about donation," concludes DeJong. "All
that is needed to make a difference is for families to have a single,
memorable conversation."
For a copy of The Milbank Quarterly article, "Options for Increasing Organ
Donation: The Potential Role of Financial Incentives, Standardized
Hospital Procedures, and Public Education to Promote Family Discussion,"
call The Partnership.
With the goal of increasing organ donation worldwide, The Partnership has
collaborated with two major European transplant
organizations--Eurotransplant and Organizacion
Nacional de Trasplantes--to develop a program to optimize each step of
the donation process. The result is Donor Action, which combines the best
practices of the United States and Europe in a standard package. Holly
Franz, Partnership manager of site education, discusses this international
collaboration and the pilot study that is being targeted at high donor
potential hospitals in Europe.
What is Donor Action?
The Donor Action program is designed to increase organ and tissue donations
in hospitals by providing a comprehensive package of tools to help a
hospital diagnose and improve its own organ donation procedures. A
self-initiated process by the hospital, Donor Action focuses on diagnosing
the hospital's potential for donation, identifying specific areas for
improvement, tailoring the program to the hospital and implementing the
program.
What is the goal of Donor Action?
The goal is to increase organ donation by helping hospitals improve their
donation practices. The program provides specific tools to help ensure
that all potential donors are identified and referred, all families are
approached with the option of donation in a caring and sensitive manner,
and best practices are used in donor maintenance and organ retrieval.
Who developed Donor Action?
An international group of medically-oriented professionals involved in the
transplantation community and committed to alleviating the donor shortage
met in March, 1994, in Seville, Spain. The partners who developed Donor
Action are Eurotransplant, The Netherlands; Organizacion Nacional de
Trasplantes, Spain; and The Partnership for Organ Donation, United States;
facilitated by Rowland Healthcare Switzerland; and supported by Sandoz
Pharma. Donor Action is based on the research, experience and on-site
hospital work of The Partnership, Eurotransplant and Organizacion Nacional
de Trasplantes, combining elements from the programs of all three
organizations.
Why was this international collaboration necessary?
The organ donation community doesn't have many efficient vehicles for
sharing ideas internationally. Donor Action builds on the best practices
of the United States and Europe to provide a standard package that is
designed for easy adaptation to meet the diverse needs of hospitals around
the world.
Where is Donor Action being used in the pilot study?
Donor Action began last fall in Westeinde Hospital, The Hague, and
University Hospital Maastricht in The Netherlands and Virgen del Rocio and
Virgen de La Macarena, both in Seville, Spain. Sites are currently being
considered in Great Britain, the United States and Canada.
What's the outlook for Donor Action?
We are excited to be participating in Donor Action and to be sharing our
materials and collaborating on an international scale. The Donor Action
program is essentially a tool kit that is still in the pilot stages. The
tool is designed to be effectively used by hospitals with a wide range of
requirements, national systems, and donation challenges.
A tool alone is no guarantee of effecting any change. What will make the
program successful is the skill with which these tools are used and the
commitment of the participating hospitals to increasing their donation
rates. There needs to be active intervention in order to have dramatic
increases in donation rates throughout the world. We will be following the
Donor Action pilot study in Europe carefully and will report on the results
at a future time.
Every patch in the National Donor Family Quilt tells the story of someone
who gave the gift of life by donating his or her organs after a tragic
death. The quilt, on loan from the National Donor Family Council of the
National Kidney Foundation, will be displayed March 9 and 10 at The Museum
of Our National Heritage in Lexington, MA, as part of a weekend of events
to encourage organ donation.
A collaboration of The Partnership, New England Organ Bank and the museum,
the event is being held in conjunction with the museum's current exhibit,
Memory and Mourning: American Expressions of Grief. "Memory and Mourning
is about how Americans remember and commemorate those they have lost," says
Robert MacKay, museum director of education. "I can't think of a better
way to end such an exhibition than by displaying the National Donor Family
Quilt."
The quilt squares, dubbed "Patches of Love," incorporate pieces of memories
into pieces of materials to commemorate the love and the lives of these
donors. Crayons, paint, markers, threads and other media have been used to
design the eight-inch squares, which are made of many fabrics and colors.
"The quilt shows that organ donation brings comfort to grieving families,
who often tell us that it is the only good thing to come out of a very
tragic situation," says Betsey Strock, director of public education at New
England Organ Bank.
Other events at the museum March 9 and 10 include: "The Nicholas Effect", a documentary about the dramatic increase
in organ donation in Italy following the death of seven-year-old Nicholas
Green; a discussion of their experiences by several donor family members at
2 p.m. Sunday, March 10; information tables manned by staff from New
England Organ Bank and The Partnership; and distribution of "A Different Kind of Love Letter," a grassroots public
education chain letter originated by The Partnership and Transplant
Recipients International Organization (TRIO).
The public is invited to view the National Donor Family Quilt and Memory
and Mourning: American Expressions of Grief from 10 a.m. to 5 p.m.
Saturday, March 9, and from noon to 5 p.m. Sunday, March 10, at the Museum
of Our National Heritage, 33 Marrett Road, Lexington, MA. Admission and
parking are free. For more information, call the museum at (617)
862-6559.
A family's beliefs about organ donation and whether they have ever
discussed their donation wishes are significant factors determining whether
that family agrees to donation.
Hospital staff and coordinators at regional organ procurement organizations
need to sensitively address these issues with families, say Holly G. Franz
of The Partnership and William DeJong of the Harvard School of Public
Health in an article in the August 1995 issue of the Journal of Transplant
Coordination. (See related press release.)
While a 1993 Gallup survey co-sponsored by The Partnership and Harvard
shows that 85 percent of survey respondents support the donation of organs
for transplantation, the survey also highlights areas of confusion that
influence a family's decision, especially understanding brain death. Over
one-third of respondents believe that a brain dead person can recover, or
are unsure about whether recovery is possible. According to Franz, it is
imperative that the family understand and accept the fact of brain death
before being asked about donation and that health professionals convey
clearly and unequivocally that brain death is death.
When a family seems reluctant to give consent, the coordinator should ask
specific questions about their concerns. Are they worried that organ
donation might be against their religion? Do they believe that their loved
one is too old to be an organ donor? Are they concerned about how it is
decided who will get the organs? Are they unsure whether the transplants
will really make a long-term difference in other people's lives?
"Some professionals believe that bringing up the topic of donation with a
grieving family is an imposition, and they may try to protect the family by
not referring the patient as a potential donor," Franz says. "OPO
coordinators need to make sure that health care professionals understand
that the vast majority of Americans are supportive of donation."
"Knowing what the public thinks helps you talk to them. Care providers
will serve families by providing them with the best possible opportunity to
make their own decision about donation," she concludes.
For a reprint of the Journal of Transplant Coordination article, "Public
attitudes toward organ donation: Implications for OPO coordinators" or a
copy of the Gallup survey, "The American Public's Attitudes Toward Organ
Donation and Transplantation," call The Partnership.
Because there are a number of common misperceptions about organ
donation, the following are some, but certainly not all, of the points OPO
coordinators should emphasize when talking to families about donation:
Not all hospitals are equal when it comes to organ donation. But just
where the problem lies within a specific hospital or region may not be
obvious, even to hospital staff or organ procurement organizations (OPOs)
working in hospitals.
Recently, The Partnership linked with the Regional Organ Procurement Agency
of Southern California (ROPA) to look at the situation in seven Los Angeles
hospitals. In assessing the results, Dr. Thomas Rosenthal, ROPA medical
director and a kidney transplant surgeon at UCLA Medical Center, called The
Partnership's approach "quantitative and scientific."
For calendar year 1994, the team applied The Partnership's Medical Record Review (MRR) methodology. The seven
project hospitals, chosen jointly by ROPA and The Partnership, were thought
to have high donor potential based on factors such as bed size, trauma
status and past donor activity.
Results indicated there were 207 potential donors. This is an estimated
average of 35 per hospital, based on the fact that the medical record
review in two hospitals covered only six months. While individual
hospitals ranged from a low of four to a high of 101 potential donors, the
four large hospitals (more than 350 beds) averaged approximately five times
more potential donors than the three smaller hospitals.
Actual donors per hospital ranged from one to 15. The donation rate
(actual donors compared to potential donors) at each hospital ranged from
six percent to 25 percent.
Two major factors contributing to the gap between potential and actual
donors were failure to ask and low consent rates. Twenty-nine percent of
the potential donor families were never asked to donate. Of the families
who were asked, the consent rate was only 37 percent.
MRR also revealed details about the demographic nature of the sample to
whom the requests were made. In Los Angeles, members of minority groups
comprised 77 percent of the potential donors, including 53 percent who were
Hispanic. While referral and request rates were similar for all ethnic
groups, consent rates were lower for minorities. Sixty percent of white,
non-Hispanic families consented to donation, compared to 33 percent of the
Hispanic, black and Asian families. These findings accentuate the
importance of efforts to develop programs to sensitize staff to cultural
issues.
"There is a significant opportunity to increase organ donation in the
hospitals reviewed by closing the gap between the number of potential organ
donors and the number of actual organ donors," says Rick Fowler,
Partnership clinical educator. "Increases can be achieved by focusing on
each step in the organ donation process: referring all potential donors to
the OPO; ensuring that all families of potential donors are approached
about donation; and asking these families in an appropriate manner."
The hospitals in Los Angeles have supported the project and are
enthusiastic about improving their donation rates. "Medical Record Review
has been received in a positive fashion by all our hospitals," says Cheryl
Bode, ROPA manager of hospital and family services, "and we've gotten
tremendous support from the larger hospitals." She feels the hospitals are
assuming ownership of the organ donation situation and are asking
themselves, "How can we improve the whole donation process?"
"For the first time, we really understand the magnitude of the potential in
these hospitals," says Dr. Rosenthal. "The Medical Record Review project
was a springboard to look at these issues, helping us to focus on the most
important areas in which to devote our energies."
ROPA plans to meet with administrators at each hospital and provide
detailed confidential information about their own institution's findings.
At some of the hospitals, task forces on organ donation already have been
put together. The MRR project has been expanded to 14 hospitals, with
plans to include more.
"We now use Medical Record Review as a standard methodology and tool in all
the hospitals in our service area," says Bode. ROPA has established
categories based on donor potential for all of the 140 hospitals it serves
and requires that MRR be conducted regularly in all Class A hospitals (25
or more potential donors per year) and Class B hospitals (10 to 24
potential donors). ROPA is also looking at The Partnership's
recommendations for improving referral rates and the request process.
