Joining Forces provided a forum for conference participants to raise issues
related to donation and transplantation requiring attention from the
community. The group recognized that no single organization can pursue all
of these ideas and approaches, and agreed that organizations will need to
work together in a coordinated and complementary fashion, with each
organization carrying out the activities that play to its strengths.
Some of the issues raised by participants include:
- Community Involvement and Public Education. It is important to
involve participants at a grass-roots level in educational efforts --
including donor family members, transplant recipients, members of minority
communities, and others -- to resolve the donor shortage.
- Economic Analysis. There is need for more data on the economics
and cost effectiveness of transplantation.
- Impact of Managed Care. Questions were raised about the
increasing pressure from cost containment and the extent to which providers
will cover transplantation in the future.
- Professional Education Hospitals should provide training for
in-house physicians to ensure that they understand brain death criteria and
are comfortable making the declaration.
- Alternative Approaches. Several participants raised ideas about
alternative approaches to increasing donation, such as using the donor card
as a legally binding document, increasing living donation, and expanding the
potential donor pool.
- National Coordination. There is need for an organization to
coordinate and disseminate successful donation models across the country.
For more information on the Joining Forces conference, see the Summer 1995 issue of Progress Notes, which is
dedicated entirely to this meeting.
Back to Progress Notes Archive main menu
Back to the Partnership Home Page
At the University of Texas Medical Branch (UTMB), a 900 bed trauma center
in Galveston, organ donation has recently become an institutional priority.
"With more than 200 patients on our waiting list for a vital organ transplant,
we felt a responsibility to maximize donation at our own institution," said
Andy DeYoung, Executive Director of Clinical Affairs at UTMB. "While we did
a good job of identifying potential donors, many families denied consent. We
knew we had to improve the donation process."
DeYoung and Thomas Broughan MD, a liver transplant surgeon, took the lead in
making organ donation a hospital priority. In April 1994, UTMB began a
collaborative effort to improve organ donation with The Partnership for
Organ Donation and the Southwest Organ Bank (SWOB), UTMB's organ
procurement organization. The initiative fit within the context of
hospital-wide Continuous Process Improvement initiatives.
After clarifying the project goals -- to achieve rapid and sustainable
increases in the organ donation rate -- the hospital designated a
multi-disciplinary task force to drive the initiative forward. Physicians,
nurses, administrators and social workers from UTMB, coordinators from
SWOB, and representatives from the Partnership formed the team which
managed the effort to monitor and maintain a higher standard of donation
performance.
Diagnosing the Hospital
Before the task force was set up, professionals at UTMB had little
information about past donation performance. "While we knew that we were
missing some donors, we didn't yet have enough information to allow us to
rectify the situation," said DeYoung.
Using data from a medical records review (MRR) of 1992 patient deaths, a
survey of more than 100 hospital staff members, and interviews with key
individuals, the task force began "diagnosing" organ donation at UTMB.
The MRR revealed nine organ donors out of 24 potential in 1992, for a
donation rate of 38 percent. The hospital survey suggested -- and
interviews confirmed -- that although the staff were comfortable
identifying and referring potential donors, they felt uncomfortable asking
families about donation and lacked consensus about what to do if a patient
appeared to be a potential donor.
"These issues are not uncommon," said Jean Williams, site team manager
from The Partnership. "Our research and interventions in hospitals all over
the country have shown that hospitals typically realize only about one third
of their potential. We have found that unclear donation protocols adversely
affect many institutions."
Based on their research, the team identified several factors inhibiting the
effectiveness of donation practices. Because donation is a relatively
infrequent event, few in-house staff had been exposed to enough cases to
develop real expertise. Many people became involved in donation because
there were no clearly defined roles or standard protocol to follow. And
finally, there was no measurement system to determine how well the
process worked, that is, how well family needs were met.
Developing a Solution
The team's solution to these issues had four components:
- a standard protocol was developed to clarify the sequence of events that
should take place when a potential donor comes into the hospital, including
the conditions under which a patient should be referred as a potential donor,
who should be involved in the process, the appropriate timing for the
donation request, and the optimal setting;
- a core group of hospital staff was established as in-house donation
experts, with clearly defined roles and responsibilities for managing the
interactions with potential donor families;
- all staff involved in donation were trained on the protocol and their role
in it; and
- a measurement system was developed to track the performance of the
system and provide feedback to hospital management, the donation
committee and other involved staff.
The Protocol
The protocol was designed to ensure 100 percent identification of all
potential donors and a request process sensitive to family needs. It ensures
that a core group of trained in-house coordinators -- primarily critical care
nurses -- is available around the clock to work with families facing the
donation decision. The in-house coordinator is also responsible for
contacting the SWOB coordinator when a potential donor has been identified
and jointly coordinating the process throughout.
Together, the SWOB coordinator and the in-house coordinator assess the
medical suitability of the patient and develop a family communication plan.
The in-house coordinator meets with the family to reinforce the grave
prognosis, assess the family's understanding of the situation, offer support
and answer questions.
"The teamwork aspect of this process is critical," said SWOB Regional
Coordinator, Gina Villarreal. "SWOB works with the in-house coordinator to
ensure that donation isn't mentioned to the family until they have had time
to understand that their family member is dead, to ensure that they
understand brain death, and to answer their questions and support them
through what is one of life's most difficult moments." Once the family
clearly understands that death has occurred, the SWOB coordinator is
introduced to raise the topic of organ donation and make the request.
After designing the protocol and designating the core donation team, all
relevant hospital staff were educated to ensure that they understood their
roles and followed the new protocol. A measurement system was put into
place to track donor potential and process variables, and provide feedback to
hospital management, the donor council, and involved staff.
Early Feedback
Preliminary results show a promising upward trend in consent rates and
donation rates. In the nine months prior to education on the new protocol the
donation rate (donors divided by total potential) was 23% (3/13), versus a
donation rate of 57% (12/21) after education. "It is too early to draw
definitive conclusions about UTMB performance," said Dr. Broughan, "but the
early donation figures look good. It seems that everyone in the hospital
knows about the group's efforts and success."
Team members agreed that the hospital's commitment to establishing a
donation protocol, along with the enthusiastic involvement of all
participants, will ensure sustainable increases in the donation rate.
Since many transplant centers have significant potential for organ donation,
it is critical that they take responsibility for improving their donation
performance. By referring 100% of potential donors to the organ
procurement organization and by implementing a sensitive, well-timed
request for all families of potential organ donors, more organs will become
available for patients awaiting transplants.
"Transplant centers need to take a leadership role and increase donation in
their own institutions if we want to increase transplantation nationwide,"
said DeYoung. "It is our hope that this program at UTMB -- initiated by and
for the hospital -- will be a widely adopted model for improving donation."
POTENTIAL DONOR OUTCOMES AT UTMB
Pre vs. Post Intervention
See also the Partnership History
Back to Progress Notes Archive main menu
Back to the Partnership Home Page
Ms. Charlotte V. M. Ottley joined The Partnership's Board of Directors in
October, 1994. A specialist in communications, media, and cause-related
marketing, Ms. Ottley is currently expanding her family-owned business
focusing on special market development. Previously, Ms. Ottley was the
Director of Public Affairs and Executive Producer of Public Affairs
Programming for WNBC in New York where she spearheaded major campaigns
such as the Emmy winning "For Peace Sake," and "Adoption," which also won
multiple awards.
In 1993, Ms. Ottley spoke at the conference "Helping Families Decide:
Educational Priorities for Solving the Organ Donor Shortage," sponsored by
The Partnership for Organ Donation and the Harvard School of Public Health.
Ms. Ottley joins a Board of Directors whose members have extensive personal
and professional experience in donation and transplantation and whose
commitment has been reflected in the time and energy dedicated to The
Partnership.
Board members include Charles Fiske, father of a transplant recipient and
founder of The Family Inn Foundation; David Korn, MD, Dean of Stanford
Medical School; Burl Osborne, transplant recipient and President and Editor
of The Dallas Morning News; Russel Patterson, MD, Chief of Neurosurgery at
New York Hospital - Cornell Medical Center; Hiram Polk, MD, Chair of the
Department of Surgery at the University of Louisville; Sarah Sanford, RN, MA,
Executive Director of the American Association of Critical Care Nurses;
Raymond Schultze, MD, Director of the University of California Medical
Center; and Norman Shumway, MD, Chairman of the Department of
Cardiovascular Surgery at Stanford Medical School. Michael Evanisko,
founder of The Partnership, currently serves as the President of the Board.
Back to Progress Notes Archive main menu
Back to the Partnership Home Page
At a recent Department of Statistics Colloquium at Harvard University, Cindy
Christiansen, PhD, a statistician from the Department of Health Care Policy
at Harvard Medical School, presented statistical methods under development
to estimate organ donor potential. The research is supported by a grant from
the Division of Organ Transplantation in the Department of Health and Human
Services, awarded to The Partnership for Organ Donation in late 1993.
As a member of the team that includes faculty from the Harvard School of
Public Health as well as staff from The Partnership, Christiansen has
analyzed data gathered from the California Transplant Donor Network,
LifeSource Upper Midwest OPO and the Washington Regional Transplant
Consortium to identify hospital characteristics that predict donor potential
and to develop a model to accurately predict potential in hospitals that were
not included in the sample.
Christiansen specializes in developing techniques for predicting the
occurance of rare events. "Even in large donor hospitals, organ donation is a
relatively infrequent occurance," said Christiansen. "The infrequency of the
event increases the challenges in developing accurate estimates. This study,
however, has shown great promise in helping to determine donor potential."
The presentation was attended by statisticians throughout Harvard
University, and included Carl Morris, an internationally renowned
statistician who has consulted with Christiansen on this work.
After the presentation of the statistical methods, participants discussed the
methods and the application, and agreed that this methodology should enable
the field to estimate with greater confidence the potential for organ
donation by region. "This group was particularly excited by the practical
applicability of this methodology," said Christiansen. "Often, statistical
theories remain at the theoretical level, but this method has a clear and
important application."
Results of the grant are currently being prepared for publication.
Back to the Partnership Home Page
At the beginning of 1994 the kidney waiting list stood at nearly 25,000, a 79
percent increase over the previous five years. Kidney transplants, from both
cadaveric and living donations numbered 10,859 in 1993, a level that has
been increasing only slowly. Despite the availability of dialysis for patients
awaiting transplant, there is a considerable and growing death toll among
this group. In addition to the cost in human life, the unavailability of kidney
transplants is adding significant costs to the health care system.
Living donation may provide an important source of additional organs. Data
from UNOS' 1994 Report of Center Specific Graft and Patient Survival Rates
show that there is considerable variation in practice regarding living
donation among kidney transplant centers across the country. Kidney
transplants from living donors comprised 22% of all transplants performed
from October 1987 to December 1991. Among the twenty largest kidney
transplant programs, the rate of transplantation from living donors ranged
from 6% to 43%.
Currently, there are no data to explain the differences in observed practices
among kidney centers, nor is there much information about the attitudes and
behaviors of medical practitioners who evaluate end-stage renal disease
(ESRD) patients for transplant and counsel these patients and their families
on their transplantation options. Examining current practices for identifying
and requesting donation from living donors could yield valuable insights into
how to increase living donation.
In order to understand more fully opportunities to increase kidney
availability through living donation, The Partnership is conducting a study,
with support from Syntex Pharmaceuticals. The study consists of a survey
which measures attitudes, knowledge, and professional practices of
physicians with respect to living donation, and elicits their ideas about
opportunities to increase living donation as well as their concerns and
reservations.
More than 300 professionals -- primarily nephrologists caring for patients
with ESRD -- completed the survey at the recent American Society of
Nephrology annual meeting. Later this month, survey results will be
presented and additional surveys will be completed at the American Society
of Transplant Surgeons (ASTS) and the American Society of Transplant
Physicians (ASTP) meetings in Chicago.
If you are interested in obtaining a copy of the survey report later this
summer, contact The Partnership for Organ Donation.
See also the Partnership History
Back to the Partnership Home Page
Asking families who have just suffered the worst loss of their lives for
their loved one's organs must be among the most disheartening tasks in
medicine.
It's true that organ donation is supported in principle by a large proportion of
Americans. It's also true that five thousand families every year do consent
and some of them even make the first move.
But, for many people, it is all too much. They may be numb with shock or
unwilling to believe the worst or simply at a loss to know what is the right
thing to do.
I imagine every case is different: some people want to mull over a decision
as big as this. Others want to sign the forms and go home. Some want
privacy, others to talk it over with a professional. Some come to the idea
with great reluctance, others eagerly.
Moods can change rapidly in the same people. In a few hours or minutes they
may go from resignation to bitterness and back again. It would take the
wisdom of Solomon to come up with a formula to deal satisfactorily with all
these variables. But as an amateur who has become involved, I'd like to
suggest a few guidelines.
First, almost everyone needs time to get used to the idea that death has
occurred. It is a time for contemplation, a time to say good-bye, a time to
pull yourself together to prepare for a life that will never be the same again.
Yet Maggie and I have heard a variety of stories of families who refused to
donate because they said the request came too soon. Some said someone on
the hospital staff was too pushy or too eager. Others complained of
matter-of-factness. Some were offended at being asked to think of a
donation while their loved one was still alive. I believe these incidents are
the rare exception, probably due more to strained nerves on both sides than
genuine insensitivity. Wherever the fault lies, these stories underline the
importance of patience and gentle treatment during some of the most solemn
moments the family will ever know.
Second, any lack of trust in the hospital staff is likely to spawn a host of
doubts in even willing donors. Did they really do everything they could to
keep him alive or was a part of their mind fixed on the prospect of saving
several other lives? The body still looks alive: are they sure she's gone?
Are they telling the truth when they say organ transplants are effective or
are we making a painful but worthless gesture?
In our case the doctors talked frankly and fully from the start, bringing in
medically qualified interpreters to make sure we understood Nicholas's
condition and prognosis. They impressed us with their professional skills.
When death came we had no doubt they had done everything in their power to
save him. They explained brain death, how they tested for it and their
procedures for guarding against mistakes. In the end it was we who
suggested donation.
Third, anything health care workers can do to encourage families to discuss
organ donation before it becomes a possibility would likely increase consent
rates. In a non-traumatic environment doubts can be acknowledged,
misconceptions examined and rational decisions taken.
It's as if a family member had asked to be cremated or have a particular
inscription put on the tombstone. Not only do we do it, but we do it
gratefully, thankful for one last shared experience. Organ donation can be
like that. Once the strangeness is taken out of the decision it could easily
become the norm rather than the exception, an opportunity not an imposition.
In the last few months we have met dozens of donor families and talked to
experienced health care people in this field. We have yet to hear of one
family who regrets the decision. Partly, I think, that is because we have all
realized -- and often been surprised by -- the size of the gift we had in our
hands. I think now that if we had hoarded Nicholas's body instead of sharing
it, I would never have been able to look back without a sense of shame.
There is satisfaction in knowing that families who could have been laid low
by tragedy are instead restored to love and happiness when their loved one
receives a needed transplant. And how healthy they seem, facing death a few
months ago, now back at work, playing sports, or talking about getting
married and having children.
As awareness spreads, donations have a ripple effect, multiplying the
original impact. People now write regularly to us saying they have a new
lung or liver because someone was moved by what happened to Nicholas.
Something happens too at an even deeper level when stories are told about
families who made the choice: a sense of people drawing closer, recognizing
how all our lives are intertwined and that what divides us is trifling
compared with what we have in common. You can feel them resolving to live
better lives. It is the sort of feeling that brings mankind to its tiptoes.
What a legacy that is for those we loved and lost. And how proud of them it
makes us feel.
See the following web pages for more about the Green family:
Back to ProgressNotes Archive main menu
Back to the Partnership Home Page
When her son Tom suffered a fatal gunshot wound in 1991, Alice Davis (not
their real names) suddenly had to decide whether or not to donate his organs.
Alice's difficult decision was made even harder by the fact that hospital
staff members never fully explained to her that Tom was dead.
"I was told on the second or third day that [my son's] brain was functioning
but that his heart had stopped," Alice says. "The very next day, I was told
that he was brain dead but that his heart was working in perfect condition.
Needless to say, I knew that could not be true."
The confusion Alice felt is quite common among the families of potential
organ donors. According to the preliminary findings in a major study by The
Partnership and the Harvard School for Public Health, the way information is
presented to families by health care professionals often plays a large role in
a family's decision about donation.
"My most important reason for deciding against it was because of the way I
was approached and the very fact that I wasn't given all the information that
I should have had," says Alice. "I was not told what was happening, so when
organ transplants came up, I was not interested. I did not want to hear about
it. . . . I was not told that [my son] would die. I was not told the damage done
by the bullet."
The stories of Alice and others who chose not to donate their loved ones'
organs can provide valuable lessons to health care professionals and others
seeking to increase the number of organs available for transplantation. Until
now, however, there have been no large-scale studies that investigate the
experiences and perceptions of non-donor families during the donation
process.
In the largest study ever to include both donor and non-donor families, The
Partnership and Harvard researchers conducted in-depth interviews with the
next of kin of nearly 150 potential organ donors. Collaborators in the
project, which is funded by a grant from the Division of Organ
Transplantation, were the Delaware Valley Transplant Program, the New
Jersey Organ and Tissue Sharing Network, and the New York Regional
Transplant Program.
The study analysis will be completed later this spring, but initial findings
suggest that a much larger proportion of families would donate if there were
better communication within families and between family members and
medical professionals. Although some non-donor families remain firmly
opposed to donation, many others say that they now regret their decision.
Interviews with non-donor families find that poor explanations of the
patient's prognosis or brain death by hospital professionals can undermine
the family's trust in the care provider and upset the donation request
process. Similarly, families who do not talk about donation prior to a crisis
may not be aware of their loved one's wishes. This uncertainty often makes
families reluctant to donate.
Consider the case of Joan, a 51-year-old woman who chose not to donate her
husband's organs. Since Joan and her husband had never discussed organ
donation, Joan had no idea if he wanted to become a donor.
Her decision was further complicated by the confusing array of information
given to her by her husband's physician. According to Joan's description of
her discussions with the doctor, it is clear that she did not understand that
her husband was dead.
"[The physician] was also discussing with me the possibility of my husband
dying, the possibility of him not coming out of the coma, the possibility that
his whole brain is not dead, the possibility that he can still hear me, the
possibility that after running some more tests that everything in his brain
might be dead except the hearing," Joan says. "It was a lot of stuff."
The way donation was handled by the physician undermined Joan's confidence
in her husband's physician. "I had no trust in this man," she says.
Joan also says that it would have been better if she knew her husband was
dead before donation was mentioned to her. Maybe then, she says, "I could
have understood a little bit better or accepted it a little bit better." But
because no clear explanation of brain death was given to her, she still
believes that brain death is like a coma from which people can recover.
Alice also says that hospital staff members mentioned donation to her
before she knew that her son was dead.
"The way it was brought [up] to me was just in conversation," recalls Alice.
"'Have you thought about having your son's organs donated?' I said, 'No, I have
not.' . . . She said, 'Well, maybe you should think about it.' I do believe that at
that time she thought that I had already been informed about what my son's
condition was, [but] that was something that never happened."
In other cases, families chose not to donate because they did not understand
how their loved ones felt about being an organ donor.
Alex's family, for example, elected not to donate his organs because they had
not discussed it with him before his accident. The family later discovered
that Alex wanted to be a donor when his brother Bill checked Alex's driver's
license a week later.
"He kept it pretty secret, just on his license," Bill says. "It's kind of sad. . . .
If we only knew what he'd written down on his license, then we would have
known what to do."
What lessons can we draw from these stories?
First, families need clear explanations of the patient's condition and of the
meaning of brain death. They need to know, in unmistakable terms, that their
loved one is dead, and then be allowed time to accept their loss before the
subject of organ donation is brought up.
It is confusing for families when health care professionals ask for donation
too quickly. Premature requests may even raise suspicions about the
medical staff's competence or commitment to saving the patient's life. A
more humane and effective request process requires organizing the hospital
staff around a standardized protocol that incorporates the needs of families
into hospital procedures.
Second, it is imperative that people who want to become organ donors tell
their families of that wish. Every hospital in the U.S. requires consent from
the next-of-kin before allowing donation to proceed. It is too much to
expect that families facing a medical crisis will think to look for a donor
card or some other piece of evidence of their loved one's wishes.
Getting families to discuss their wishes about organ donation is a matter of
public education. The Partnership for Organ Donation, the Coalition for Organ
Donation, the National Kidney Foundation, and several regional organ
procurement organizations have made family discussion the cornerstone of
recent public education programs. In addition, donor cards can be redesigned
to encourage family discussion by requiring a family member to be one of the
signatory witnesses.
Results of the completed research, which will compare the hospital
experiences of donor and non-donor families, will be reported in an upcoming
issue of Progress Notes.
Back to Progress Notes Archive main menu
Back to the Partnership Home Page
