Fortunately there is reason for optimism about increasing organ donation. It is now clear that at least half the answer to the organ donor shortage lies within hospitals--the setting where severely injured or ill patients and their families receive care and are asked to consider donation. Specific steps and protocols have been identified that hospitals can use to improve donation practices, and more hospitals are adapting these practices to their needs and instituting them. Organ procurement organizations (OPOs) and hospitals together are strengthening their coordination of the complex and delicate donation process.
A strong foundation of systematic work has identified better donation practices, and The Partnership is assisting hospitals and OPOs to adopt these practices. Early work with a pioneering group of OPOs, including Kentucky Organ Donor Affiliates, California Transplant Donor Network, LifeSource Upper Midwest OPO, and the Washington Regional Transplant Consortium, helped define the optimal donation process and provided experience in implementing changed practices in hospitals. More recent projects with several leading hospitals, including the University of Texas Medical Branch at Galveston, Johns Hopkins Hospital, and the University of Maryland Medical System, have shown the value of hospital commitment to change. Throughout each phase of our work, research and evaluation activities--guided by teams from the Harvard School of Public Health and the Harvard Medical School--have shared key findings through professional meetings and journal articles.
We are now moving from a research and development mode into an application mode. The basic framework has been validated. Now it's time to figure out what variations are necessary to respond to institutional differences, what implementation models will make adoption of new practices both efficient and effective, and what strategies for dissemination will allow these "best practices" to become the norm.
That's part of what we'll be figuring out through our collaboration with the University HealthSystem Consortium (see story). Currently, we are working in five hospitals and planning to include at least 16 more in the next several months. We know the process of change won't be identical in each hospital, because each hospital is unique. But we are confident there are core practices that can and should be universally applied. Working with a dedicated group of highly capable institutions to break new ground in establishing better practices is what will make the project interesting, challenging and worthwhile.
This issue of Progress Notes, demonstrates how the same basic ingredients can be adapted to meet the needs of hospitals and OPOs across the nation and even across national borders. It's clear that there's a basic "prescription" for increasing organ donation, but there's room for flexibility in the way the "medication" is administered. In Virginia, an OPO--Virginia Organ Procurement Agency--has taken the basic framework and administered it in two hospitals within a regional healthcare system (see story). The donation program at the University of Nebraska Medical Center (see story) is more hospital driven, centering on an acute bereavement team. In Canada, where both the healthcare system and the transplantation system are significantly different from the U.S., The Partnership's model is being used to diagnose potential and to determine where there are opportunities for improvement (see story). The solid data produced by this project will be used by the Canadian transplant community as it develops strategies and goals for increasing donation rates.
The basic ingredients are the same, but the form can be adapted for each hospital and each unique donation situation. The answer to the shortage of organs for transplantation is at hand. We owe it to the 50,000 Americans and thousands more around the world who wait for lifesaving transplants to make these practices universal.
The following articles are contained in this issue of Progress Notes:
"With so much attention being focused nationally on the fairness of the allocation system, it's important to remember that allocation would not be such a difficult issue if donation could be increased," says Michael J. Evanisko, Partnership President. The project ultimately will lead to practice guidelines for organ donation, which, if adopted nationwide, could provide organs for many of the 50,000 Americans currently awaiting transplants.
The first participants in this groundbreaking initiative include: University of Virginia Health Sciences Center, Charlottesville, VA; Virginia Commonwealth University's Medical College of Virginia Hospitals, Richmond, VA; The University of Iowa Hospitals and Clinics, Iowa City, IA; Oregon Heath Sciences University Hospital & Clinics, Portland, OR; and Ohio State University Medical Center, Columbus, OH. Enthusiasm for the project is high as "companion" hospitals are being identified in these regions to work with the UHC-member hospitals. Openings remain for a limited number of additional geographic regions to be included in the project.
UHC, an alliance of 70 academic health centers, is a leader in developing new practices. Its member hospitals currently perform more than half of all solid organ transplants in the nation. "This is the first time that a major hospital consortium has stepped forward to increase donation," says Evanisko. "UHC hospitals are major economic stakeholders in transplantation."
R. Edward Howell, Director and CEO of the University of Iowa Hospitals and Clinics, calls the project "extremely good news for patients and hospitals alike. This hospital-focused approach, which enhances the process by which families are offered the opportunity to donate, holds great promise."
The project is driven by research conducted by The Partnership and the Harvard School of Public Health that shows that the in-hospital process makes a difference in donation and consent rates. According to those studies, health professionals either do not identify potential donors or fail to ask families about donation more than a quarter of the time. Another third of the families deny consent, often because they were not asked about donation in a sensitive enough manner.
"With the chronic shortage of organs for transplantation, we want to make sure all families of potential donors are approached with care, concern and prudence," says Kamilla K. Sigafoos, Associate Executive Director, Hospital Services, Ohio State University Medical Center. "By participating in the Partnership project, we hope that more families will freely say 'yes' to donation."
Because there is currently no commonly accepted measure of donation performance, the project will also benchmark donation performance and establish reliable and useful measures of donation effectiveness in hospitals. Previous pilot projects conducted by The Partnership at the University of Texas Medical Branch at Galveston, Johns Hopkins Hospital and the University of Maryland Medical Center confirm that donation rates above 60 percent are realistically attainable, versus current average donation rates of approximately 33 percent.
Lawrence Hunsicker, M.D., a University of Iowa transplant specialist and President-Elect of the United Network for Organ Sharing (UNOS), says, "Participants will be able to examine and improve our own performance, and then compare our efforts and results with similar hospitals across the country. Ultimately, of course, the establishment of organ donor protocols and appropriate monitoring mechanisms will benefit virtually every patient, hospital and organ procurement organization (OPO)."
The collaborative intervention in the hospitals will last six months, followed by a six-month monitoring period to ensure that long-term changes are successfully institutionalized. In each case, The Partnership and the participating hospital will work closely with the OPO throughout the project, from diagnosis of donor potential to implementation of a donation protocol. OPOs currently participating include Virginias' Organ Procurement Agency, LifeNet, Iowa Statewide Organ Procurement Organization, Pacific Northwest Transplant Bank, and Lifeline of Ohio Organ Procurement Agency.
Major funding for this initiative has been provided by Sandoz Pharmaceuticals Corporation, with additional funding supplied by Wyeth-Ayerst and the participating transplant centers.
Enrollment of additional participants is underway. For more information,
call Kara Helander at The Partnership.
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"Our methods and approaches are as relevant in Canada as in the U.S.," says Carol Beasley, Partnership Managing Director. "In all countries where organ transplantation is a well-developed element of medical care, the donor shortage is the main constraint to providing more transplants for those who need them."
Of the industrialized countries, Canada has a relatively low rate of organ donation, with 15 donors per million population, compared to nearly 21 donors per million in the U.S. and 27 donors per million in Spain, the top performing country. The Canadian health care and transplantation systems differ from the U.S. in important ways. Health care is publicly funded, mainly from the budgets of each province. The transplantation system is not centrally managed, and organ procurement organizations are organized differently in each Canadian province.
With the encouragement of the Kidney Foundation of Canada and several transplant surgeons and procurement professionals, The Partnership has begun diagnostic and implementation projects in Canadian hospitals. Sandoz Canada provided seed funding, with a portion of project costs being underwritten locally by participating hospitals, procurement organizations, provincial governments and private foundations.
The first phase entails medical records review and staff surveys in 13 or more hospitals. These data provide a detailed picture of donor potential and outcomes, and help gauge the readiness of hospital staff to respond effectively to donor situations. A second phase of the project will focus in depth on a smaller number of hospitals, helping them to implement consistent donation protocols and prepare an in-hospital team of donation experts. The project is also testing the tools and frameworks developed by Donor Action, an international collaboration by The Partnership, Eurotransplant (The Netherlands) and Organizaci—n Nacional de Trasplantes (Spain).
Hospital diagnoses have been completed at Vancouver Hospital and St. Paul's Hospital in Vancouver, with participation from the British Columbia Transplant Society, and University of Alberta Hospital and Royal Alexandra Hospital in Edmonton, with participation from the HOPE (Human Organ Procurement and Exchange) Program. Soon to start are two hospitals in Toronto and two in Calgary.
Results from medical records reviews in the first several hospitals have been analyzed and were presented at the annual meeting of the Canadian Association of Transplantation and the Canadian Transplant Society in September. The results were also reviewed at "Links to Success," a special forum sponsored by the Kidney Foundation of Canada in November, during which professional and lay communities identified mutual goals and strategies.
Preliminary findings from the first group of Canadian hospitals include:
The project shows that the medical records review methodology is applicable to Canadian hospitals. Local teams are now qualified and experienced with this approach, so they can continue to monitor selected hospitals or expand the review to include additional institutions. Results from the project will also provide solid data as the Canadian transplant community considers strategies for improving organ donation and strengthening the transplantation system as a whole.
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"These hearings are evidence of increased interest by the federal government in solving the organ donor shortage," says Carol Beasley, Partnership Managing Director. "A lot of what's innovative goes on at the grassroots level. Good public policy depends on policy makers hearing about this from the people who do it."
Michael J. Evanisko, Partnership President, told the HHS panel, chaired by Assistant Secretary Philip R. Lee, that at least half of any national resources devoted to increasing organ donation should be directed to helping hospitals to improve their donation practices. Citing The Partnership's research with 11 organ procurement organizations and over 130 hospitals nationwide, in conjunction with the Harvard School of Public Health and Harvard Medical School, he concluded that "if hospitals adopted optimal organ donation practices, an additional 5,000 donors would result, bringing the effectiveness of the donation system from one-third to nearly 70 percent."
Also presented on behalf of David Burnett, M.D., Vice President, University HealthSystem Consortium (UHC), Evanisko's testimony outlined the Partnership/UHC initiative to increase organ donation in leading hospitals nationwide.
Evanisko suggested that the HHS committee consider a broad range of policy issues, including incentives for non-transplant hospitals. "We recommend that a set of national goals for organ donation be adopted that incorporate ambitious but achievable targets," he said.
The first-ever hearing on organ and tissue donation held outside of Washington, a Congressional field hearing was organized by The Partnership and co-sponsored by Harvard Medical School and Harvard School of Public Health. While focusing on the donor shortage in Massachusetts, where waiting times for transplants are among the longest in the nation, the hearing offered case studies and suggestions for increasing donation nationally.
"There are two different important elements of a successful strategy to increase donation: increased public awareness and improved donation practices in hospitals," said Beasley.
In her testimony, Beasley pointed to the need for standards of practice for organ donation, and urged the government to foster more collaborations between researchers and practitioners. "We need to focus on hospital systems and make sure that successful donation practices are constantly reinforced in hospitals. Organ donation needs results-oriented 'action research' as the basis for better practices," she said. "This aim can be fostered by dedicating funding to research and demonstration projects that directly affect organ donation practices."
Research presented by Steven L. Gortmaker, Ph.D., Senior Lecturer, Harvard School of Public Health, showed that organ donation could be addressed more effectively by focusing on improving donation in the largest hospitals--identifying all potential donors, making sure all eligible families are asked and offering organ donation in a way that addresses families' needs. "Too often families' chances to donate organs are lost because of flaws in the way hospitals respond to organ donation," he said.
Families of donors and recipients offered poignant testimony at the hearing about their experiences. "Only if families are offered the opportunity to consider organ donation can they find the consolation that my children and I found," said Sheila McIntyre, who was not asked to donate and had to bring up the subject herself when her husband and son died. "I believe very strongly that hospital personnel do not have the right to make that decision for the family (by not asking)."
Other witnesses discussed donation in minority communities, the role of hospital critical care staff, and grassroots efforts by TRIO and other organizations.
The hearing was arranged by Rep. Moakley, who received a successful liver transplant in 1995, and Sen. Kennedy, who was unable to attend because of a Senate vote that day. Other organizations participating in planning the event included New England Organ Bank, NorthEast Organ Procurement Organization, The Family Inn, and regional chapters of TRIO, National Kidney Foundation and American Liver Foundation.
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The Moakley/Kennedy event, organized by The Partnership, produced a large audience, good media coverage, and a renewed sense of collegiality and cooperation among the many organizations working to increase donation. Two panels of speakers--one panel focusing on family perspectives and successful community outreach and the other on optimizing donation in hospitals--provided testimony that will shape public policy.
The Partnership has prepared a to strongly encourage others concerned with organ and tissue donation to work with congressional representatives and local legislators to organize similar events.
"We tell how we did it, from the first concept statement to the final media coverage," says Carol Beasley, Partnership Managing Director. "We learned a lot and are happy to share our experiences--both what worked and what we would do differently--in the hope that it will encourage others to get involved. Legislators can't make good public policy without good information."
"Congressional Field Hearing on Organ and Tissue Donation: A How-To Guide" is available on the web, or free of charge to those who are interested in organizing similar events. To receive a copy, contact The Partnership.
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"Roanoke Memorial is a great hospital--a trauma center with a kidney transplant program, but they weren't maximizing their potential," says Judy Largen, Director of Education and Hospital Development at Virginias' Organ Procurement Agency (VOPA). "It was time to bring in expert consultation to help us guide them."
More and more donation professionals are realizing that it's not enough to have above average donation rates. The current average of approximately 33 percent is far below potential. OPOs are increasing their emphasis on measuring performance relative to potential, instead of comparing one hospital to others that may be doing just as poorly.
Largen turned to The Partnership for guidance. "We have to pay attention in our industry to what's going on across the country--to what works and what doesn't," she explains. "We're a strong OPO, but we're small. The Partnership does quality research and gets involved with the top OPOs and hospitals in the country. We want to take what The Partnership has done in other centers and remold that to what will work in our situation."
Rick Fowler, Partnership Clinical Educator, tailored The Partnership's methodologies and strategies to the needs and capabilities of VOPA and the hospitals it serves. "This was a situation with significant potential for improvement and an OPO with a commitment to driving the change forward," he says.
The Roanoke project began in early 1996 with a review of medical records, looking at all aspects of Carilion Roanoke Memorial Hospital's donor programs from Jan. 1, 1994, to Oct. 31, 1995. "With baseline data collected with our tested and well-understood Medical Record Review methodology, we can compare what we find in a new hospital with what we have found before," says Fowler. "It's very efficient for an OPO to use this."
The review found 39 potential donors and 17 actual donors--a 44 percent donation rate overall. However, the donation rate had dropped from 50 percent in 1994 to 33 percent in 1995. Referral and approach rates remained constant, but the consent rate had decreased significantly from 76 percent in 1994 to 45 percent in 1995.
When hospital staff were surveyed concerning their knowledge and attitudes about organ donation, the results showed confusion about the meaning of brain death and when families should be approached about donation. "Even though they felt there was a protocol in place, nobody was following it," says Largen.
A task force of nurses, physicians, administrators and other health care providers was convened to determine how current practices could best be improved. The result is a standard protocol, which went into effect Sept. 1, 1996, at Carilion Roanoke Memorial Hospital and Carilion Roanoke Community Hospital. The protocol is providing a consistent approach in offering donation to families, as well as direction for staff involved in this process.
At the heart of the new program is the Donor Resource Team, consisting of patient representatives and pastoral care staff. Fowler and Holly Franz, Partnership Manager, presented an intensive, two-day training session last summer, which brought together VOPA and the Resource Team to discuss issues that inevitably arise when a standard protocol is in place. The team is now activated in every potential donation situation and works with all units in the hospital to ensure accurate and timely communication with VOPA and the family.
While it is too early to measure the effect of the Donor Resource Team on consent rates, early returns indicate that the team is being used. Of the first 13 referrals made to VOPA, the Donor Resource Team was involved in 11 cases. "With this early referral pattern, we are seeing a more consistent approach for meeting a family's needs in crisis," says Largen.
"This effort is significant because it shows that an OPO-driven project can be successful in determining donor potential and evaluating the existing donation process. It further proves that hospitals and OPOs can work together to improve donation rates," says Fowler. "You need a hospital that's willing to take on the task of improving. You also need an OPO that's willing to drive the process forward with persistence and energy."
The Partnership will continue to work closely with VOPA to monitor the program's progress. "We evaluate the process from day one," says Fowler. "The team will debrief after every case. But the process never really stops. You never stop monitoring or looking for ways to improve the system."
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Holly Franz, R.N., B.S.N., in charge of hospital projects, has played a major role in the development of the donation program that has become the cornerstone of the current University HealthSystem Consortium (UHC) project and other site work. She has been with The Partnership for six years and was previously a transplant coordinator at New England Organ Bank for seven years.
Proud of The Partnership's accomplishments, Franz says, "We have experience with 11 organ procurement organizations (OPOs) and over 130 hospitals throughout the country. With each project we have watched and monitored our work and have continued to improve it. We also have the research and experience to back up our claims."
Richard Fowler, Clinical Educator, has also played a key role in developing The Partnership's programs. Prior to joining The Partnership three years ago, he was an organ recovery coordinator at the Washington Regional Transplant Consortium (WRTC) when The Partnership was working there. "Having spoken with families and offered them the option of donation, I have seen what elements contribute to a good request process and what elements detract from it," he says. Fowler is coordinating sitework in Virginia.
The Partnership recently added three new staff members and a Medical Record Review specialist to meet the demands of the UHC project. Their diverse backgrounds blend together to make a dynamic team that is well--prepared in bringing about institutional change.
Nancy-Linn Swain, M.B.A., was previously Director of Community Programs at Greater Lynn Senior Services, where she managed nine departments and brought about organizational change on many levels. "My job was to restructure my departments. I brought in systems where they had none," she says. "I love project management and am a good educator." Swain is coordinating The Partnership's site work in Oregon.
Carolyn Thall came to The Partnership from FairTest, an educational advocacy organization, where she built support for educational policy reform campaigns. Now coordinating site work in Iowa, she says, "I enjoy going into a new place and handing people the tools they need to make important, long-lasting changes. The Partnership has a proven tool and I am excited to teach people how to use it."
Lila Nichols recently spent 18 months in Guinea, West Africa, as a Peace Corps public health volunteer, educating local medical professionals and village women. She will be coordinating site work in Michigan. "Change, whether it is in West Africa or Michigan, is about communication," she says. "I have learned how to go into a system, assess its needs, learn its language and work to implement change."
Barbara Converse, R.N., a critical care nurse based in Milwaukee, WI, joined The Partnership in 1996. Currently conducting the initial Medical Record Review (MRR) in hospitals and instructing hospital and OPO staff how to do MRR, she previously worked with Partnership staff while a transplant coordinator for the Delaware Valley Transplant Program. "The Partnership has set very tough timetables, but we can get it all done," she says. Communication is the key." >
"I am excited and comfortable with the team of people who are implementing this protocol, " concludes Franz. "They are intelligent and motivated and are well qualified to assist hospitals in increasing organ donation."
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"We're thrilled to have him on our Board," says Michael J. Evanisko, President of the Board and Partnership founder. "Our research shows that more than half of the answer to solving the organ donor shortage lies in the hospital. With his vast experience at some of the nation's leading hospitals, Ed Schwartz will be able to provide invaluable insights to help us achieve our mission."
At UHC, Schwartz oversees corporate administration and finance, develops corporate strategies, works with the governing bodies, and represents the consortium in the business and health care communities. He holds a master's degree in health administration from the Washington University School of Medicine, a master of theology degree from the Methodist Theological School in Ohio and a B.A. degree in philosophy from Kentucky Wesleyan College.
Members of The Partnership's Board of Directors have extensive personal and professional experience in donation and transplantation. They include: Carol Beasley, Partnership managing director; Charles Fiske, father of a transplant recipient and founder of The Family Inn Foundation; David Korn, M.D., Association of American Medical Colleges; Burl Osborne, transplant recipient and president and editor, The Dallas Morning News; Charlotte Ottley, C. Ottley Strategies; Russel Patterson, Jr., M.D., Chief of Neurosurgery (retired), Cornell Medical School; Hiram Polk, M.D., Chairman, Department of Surgery, University of Louisville; Sarah Sanford, R.N., M.A., Executive Director, American Association of Critical Care Nurses; Raymond Schultze, M.D., Professor of Medicine, University of California at Los Angeles Medical Center; and Norman Shumway, M.D., Chairman, Department of Cardiovascular Surgery, Stanford Medical School.
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Although independent from The Partnership, the ABS program includes many of the best-demonstrated practices that The Partnership has found to be crucial to increase donation. Strict protocol surrounding the death of every patient who dies in the hospital makes identification of potential donors routine and ensures that families are approached with the request for donation in a systematic and sensitive way. A team of experts is on call at all times to offer the donation option. Data detailing the request process is collected for each case.
"This program embraces the most important elements of The Partnership's program," says Carol Beasley, Partnership Managing Director. "We have found that increasing organ donation in hospitals requires certain key elements, but that each hospital can tailor a program to fit its needs. The University of Nebraska Medical Center (UNMC) is one example of a hospital that has successfully created a solid program."
It has been a long process for UNMC, beginning in 1989 when the Rev. Gary Sproat was asked to create a task force addressing UNMC's low donation rates. As he and his team began looking at the issues that affected donation, they realized that the needs of the families of deceased patients had to be addressed on a broader scale.
"What I felt at the time," says Sproat, "was an institutional discomfort with death. So we decided to expand our charge to look at the entire gamut of events that take place whenever a patient dies."
What resulted from this task force was the formation of the ABS in 1993. Although the first two years showed improvement in eye and tissue donation, there was little improvement in organ donation. In late 1995, a revised version of the program was implemented and has achieved record donation rates so far.
Today, good care for the families of dying patients is the focus of ABS, and improved organ donation is just one of the positive benefits that comes from such care. Sproat has coined the term "survivor-centered" care to describe the philosophy that drives ABS. "When we have a living patient that we are attempting to cure, we address the family of that patient. We support the family and we get the family involved in care and treatment decisions," he says. "What I am suggesting is that the care we are giving to the family prior to the death of the patient ought to extend beyond the death of the patient."
In addition to approaching eligible families about organ donation, ABS provides the family of every patient who dies in the hospital information about autopsies, counseling support, religious support, and help with funeral or memorial service arrangements. The program will serve 450 to 500 families this year.
"ABS provides us with an opportunity to make certain that the surviving relatives of all deceased patients are provided with a standard level of care, guidance and support in terms of re-orienting themselves to life without someone they love," says Robert Duckworth, Administrator of Organ Recovery Services and ABS co-director. Previously on the staff of the Southwest Organ Bank, Duckworth worked with The Partnership's pilot project at the University of Texas Medical Branch at Galveston.
The Nebraska program has had tremendous support from senior management. Marsha Morien, Associate Hospital Director, is the sponsor for the ABS program. "Because of my involvement," she says, "all members of the senior management team know about ABS and are excited about it."
Morien understands this program is crucial from a policy standpoint. "Although required request laws exist, a hospital that has a procedure on paper meets federal requirements regardless of how well that procedure is followed or how successful it is in increasing organ donation," she says. "Moving beyond incremental improvements in organ donation to make sizable improvements requires additional commitment and focus on the part of the hospital."
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For copies of these articles, contact The Partnership Communications Department.
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