Number 12, Spring 1998
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Letter from The Partnership
Throughout the sometimes rancorous debate on organ allocation following the announcement by Secretary of Health and Human Services Donna Shalala of new regulations governing the Organ Procurement and Transplant Network, there is one point on which agreement is universal--we must redouble our efforts to increase organ donation. Reallocation alone will not shorten waiting times or reduce the death toll among those awaiting organs.
In this Progress Notes are updates on projects in the U.S. and Canada to institutionalize best practices in hospitals with significant donor potential. The Partnership has long maintained that at least half of the answer to the donor shortage resides in hospitals. New evidence from donor families and hospital staff, summarized in two new research articles, adds validity to this belief.
A number of our project partners from hospitals and OPOs across the U.S. joined us in Chicago recently to review the progress of the collaborative Partnership/UHC project to increase donation. While still some distance from the finish line, we were able to assess our progress to date--which is significant--and share solutions, energy and inspiration.
We also announce the development of a new Gallup survey, a successor to the ground-breaking survey in 1993 that brought together 17 OPOs and shaped the public education message for this field. The new survey is being sponsored by The Partnership, Gallup Organization, Harvard School of Public Health and Harvard Medical School, in cooperation with the Coalition on Donation. We are grateful for the expertise of our project leadership team, which includes representatives from the Department of Health and Human Services, the Minority Organ and Tissue Transplant Education Program (MOTTEP), and the Association of Organ Procurement Organizations (AOPO).
Recently, The Partnership was invited to address the American Society of Transplant Surgeons on "Maximizing Donation." It is becoming clear that we still lack a reliable donation system that delivers good family care everywhere, all the time. For such a system, we will need clear goals and measures of performance, accountability for getting the job done with quality, adequate resources to support donor hospitals in caring for donor families, and skilled professionals on the front lines.
The Partnership is working toward an organ donation system that can be counted upon to do the right thing for families in crisis. We have seen isolated examples of effective donation systems; now the job is to ensure that "best practices" become the norm. We thank all of our project partners, funders and friends who are helping to make this vision a reality.
Michael J. Evanisko, President
Carol L. Beasley, Managing Director
The following articles are contained in this issue of Progress Notes:
Forum brings peers together to achieve donation excellence
For the past year, physicians, nurses, administrators, clergy and social workers in leading hospitals across the nation have been working to increase donation as participants in the Partnership/University HealthSystem Consortium (UHC) collaboration. In April, these multi-disciplinary participants met together for the first time at a Project Forum in Chicago to share their successes and challenges.
"Bringing peers together across institutions is one of the best ways to share best practices," says Michael J. Evanisko, Partnership founder and president. The theme of this exchange of ideas among project partners was "Achieving Excellence in Donation." The one and a half day event was organized around three expert panels that focused on the elements of a well-functioning organ donation process: Effective In-Hospital Coordinator Teams, Coordination of the Critical Care Team, and Institutional Ownership.
"Hearing other institutions' systems, issues, processes, etc., helped stimulate lots of thoughts on how to improve our process and systems," said one participant. "The best part was meeting others and feeling a part of a group, instead of isolated in our hospital."
Five themes emerged from the forum's workshops, breakout sessions and informal discussions:
The donation protocol implemented in each hospital is a framework and guide to increasing donation rates, but its success depends on the judgment, sensitivity and resourcefulness of the In-Hospital Coordinators (IHCs). These individuals are responsible for the seamless coordination of donation events with many disciplines in the hospital and with the organ procurement organization (OPO). Issues that need to be addressed for these teams to be effective fall into three categories: structural, such as keeping teams small in order to ensure that members can build skills through more frequent experience; logistical, such as finding creative ways to ensure private rooms for families and timing events properly; and ethical, i.e., remembering that the request must be neutral and without pressure. |
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Many disparate elements and disciplines are involved in organ donation. Because each donation situation is unique, the challenge is to keep donation simple in outline, to routinize where possible, and to encourage team members to use good judgment, resourcefulness and problem-solving skills when working with families.
Change is never easy for an institution. The first step in starting a donation project is to ground the hospital's participants in the change process and to make sure they have an understanding of what to expect. It is necessary to understand and address resistance, involve stakeholders and find the champions.
The staff who provide support to the families of potential donors need support themselves. For long-term success in these roles, the institution must provide support for the team in the form of feedback, acknowledgment, emotional support and respite.
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Hospitals have as much of a stake in providing quality care to the families of potential donors as in any other service offered by the hospital. It is important that "death care" be recognized as an essential service. The hospital's administration must ensure top down support and open ears to the experiences of front-line personnel involved in caring for grieving families. Data should be used to track quality and solve problems. |
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Forum participants praised the gathering, and they
returned to their
hospitals inspired with new ideas. "It was an
energizing meeting,"
they said in written feedback. "There was
excellent representation
from a variety of groups, including RNs,
chaplains, social workers and MDs,
which shows respect and support for
interdisciplinary teams. Good ideas
were generated
here."
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Gallup survey to look at public readiness to act
While 85 percent of Americans say they support organ donation, only about half of them actually donate their loved one's organs when asked. A new national opinion survey is being planned to address this paradox and discover how public support can be converted into commitment and action.
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"Today more than ever the issue is converting public support to action. This survey will enable the donation and transplant communities to develop more targeted public education and better programs to meet the needs of grieving families in the hospital," says Carol Beasley, Partnership managing director. "We are inviting input and participation from the nation's regional organ procurement organizations (OPOs) and a wide range of groups, including medical professional associations, medical charities, donation advocacy groups and companies with an interest in donation." |
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A leadership team will guide the development of the survey. The Partnership, the Gallup Organization, the Harvard School of Public Health and the Harvard Medical School, in cooperation with the Coalition on Donation, will be joined by representatives from the U.S. Department of Health and Human Services, the Minority Organ and Tissue Transplant Education Program (MOTTEP), and the Association of Organ Procurement Organizations (AOPO).
Five years ago The Partnership, in collaboration with the Harvard School of Public Health and 17 OPOs, sponsored the largest-ever Gallup survey on public attitudes towards organ donation and transplantation. Key findings included:
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The 1993 survey also found significantly different attitudes towards organ donation and transplantation across ethnic groups. The new survey will include an oversample of both African-American and Hispanic respondents, and will provide insight into what strategies are likely to be most effective. Since the initial survey, public awareness campaigns have reflected the importance of family communication. Even so, more than 4,000 Americans died while waiting for an organ last year--a 62 percent increase in the past five years, while cadaveric donors have increased only 11 percent. |
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"The 1998 Gallup survey will expand on the previous survey," says William DeJong, PhD, Harvard School of Public Health. "We need to understand more fully what factors are related to whether supporters of donation actually talk to their families about their wishes, and we need to explore whether the concerns that some people still have about donation might be addressed through public education."
The survey will examine regional and ethnic differences in attitudes and behavior towards organ donation and transplantation. It will also gauge the public's exposure to entertainment and news stories, as well as their reaction to new scientific breakthroughs.
The survey will be administered this fall. In March 1999, a follow-up conference will announce the results and provide an opportunity for leaders in the organ donation and transplant communities to chart a course of action for increasing organ donation. There also will be a national press conference, media campaign, and a legislative briefing.
"As an alliance of 100 national organizations and local coalitions working to promote organ and tissue donor awareness, the Coalition on Donation is looking forward to bringing our expertise to this important project," says Howard Nathan, Coalition president. "We hope that the survey results will help our members in planning future local and national public education efforts."
For more information
on the 1998 Gallup survey, contact The Partnership.
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Why do families refuse to donate organs?
What drives a family's decision about organ donation? In spite of overwhelming public support for donation and extensive public education campaigns, the reality is that about half of families decline to donate when asked to do so. New research reveals that their choice hinges in large part on how they were treated in the hospital.
Two articles in the January issue of the American Journal of Critical Care look closely at the people involved in donation--families and critical care staff. Based on interviews of the next of kin of 164 potential organ donors and surveys of 1,061 critical care physicians and nurses, these two studies show that hospitals often fall short.
"Together, these studies show real, but surmountable, obstacles to increasing consent rates and meeting family needs," says Michael Evanisko, Partnership president. "Care that is more sensitive to their needs will offer family members a better chance to heal after a grave loss, while also allowing more families to choose donation."
The family interview study is the first major investigation to reach significant numbers of families who declined to donate. The findings revealed that family refusal is related to lower levels of satisfaction with the overall quality of care in the hospital, less understanding of brain death, and less satisfaction with how the donation request was handled.
"Although families with certain demographic characteristics more often deny consent to donation, that finding cannot become an excuse to exclude families from the donation option," says Holly G. Franz, Partnership manager of hospital projects. "Ideally, no matter what a family's characteristics are, health care providers should approach the family with the belief that a donation is possible. In our study, even families who declined donation felt it was right to ask them, and they valued being able to consider the option. The key is treating every family with respect and care."
Unfortunately, the majority of critical care doctors and nurses don't have the training or preparation to respond to the families of potential organ donors. Critical care nurses and physicians are usually responsible for identifying potential donors, referring potential donor cases to an organ procurement organization (OPO), participating in the request for donation, and supporting the family throughout the process. While 94 percent of surveyed critical care nurses and physicians said they support organ donation, and 98 percent said involved staff should be trained in how to approach families appropriately, less than one-third reported they had received training in explaining brain death or requesting donation, essential steps in obtaining consent to donation from grieving families.
This is the first study to relate staff preparedness to actual donation rates in hospitals. The findings showed significant differences between hospitals that were performing well in organ donation and those that were low performers:
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Levels of factual knowledge about organ donation and brain death were unexpectedly low in all hospitals, but were not significantly related to donation rates.
"The major difference between high and low performance hospitals was the simple fact that more staff had been trained," says Carol Beasley, Partnership managing director. "Untrained staff may be struggling with their own feelings of loss or discomfort instead of concentrating on the needs of grieving families. In contrast, trained staff understand their roles, know how to coordinate with their OPO, and endorse the idea of decoupling. They are also much more likely to obtain consent from a family."
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Because the death of a patient represents a loss to the healthcare professional, too, dealing with families of brain-dead patients is not easy. Partnership experience has shown that if the critical care staff are knowledgeable and comfortable with brain death and organ donation, they will be able to create a more supportive and comfortable environment for families. The skill they bring to this situation is essential to helping these families and ultimately, to solving the organ donor shortage. "The bottom line: if we're serious about increasing donation, we need to educate health care professionals so they can meet the needs of grieving families," says William DeJong, PhD, Harvard School of Public Health. "Currently, many families are having unsatisfactory experiences in hospitals when trying to make a choice about donation." |
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Both of these studies confirm what organ donation and critical care professionals have long believed--good family care goes hand in hand with higher rates of donation. "Given the desperate need for improved training, we hope our research will lead to the development of more skills-based training programs on organ donation for critical care staff," concludes Beasley. "The challenge is to help hospitals across the country institute practices to ensure that every family faced with organ donation is treated with skill, sensitivity and the quality of care that will allow more to choose donation."
For a copy of "Requesting Organ Donation: An Interview Study of Donor and Nondonor Families" or "Readiness of Critical Care Physicians and Nurses to Handle Requests for Organ Donation," contact The Partnership's Communications Department.
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Canadian hospitals to implement best practices
As part of the international Donor Action program, three Canadian hospitals have started a project to institute improved organ donation practices. Two others are embarking on a rigorous diagnostic project to assess donor potential, outcomes and hospital staff attitudes.
Donor Action is a framework and set of tools developed by Eurotransplant (The Netherlands), Organización Nacional de Trasplantes (Spain) and The Partnership (U.S.) to improve hospital effectiveness in donation. The Partnership will be assisting the participating Canadian hospitals.
The implementation projects are an outgrowth of an extensive diagnosis of donor potential and performance--also part of the Donor Action program--conducted in 13 hospitals during the past year in Edmonton, Calgary, Vancouver and Toronto. The findings showed higher rates of consent in Canadian hospitals compared to U.S. hospitals.
"Although the Canadian system may be performing better than the U.S. in some respects," says Carol Beasley, Partnership managing director, "the Canadian donation rate of 41 percent still leaves room for improvement." These opportunities for improvement include identifying potential donors more consistently and making sure all families are asked about donation.
Three hospitals were selected for the implementation project because of their significant donor potential: Royal Alexandra Hospital and the University of Alberta Hospital in Edmonton, Alberta, and Toronto Hospital in Toronto, Ontario. Some adaptations will be made to reflect differences in the Canadian health system.
"The involvement of physicians, especially intensivists, in working toward a solution will be very important," says Beasley. "One challenge will be attaining consensus on the appropriate role for organ procurement organizations (OPOs) in the donation protocol. OPO involvement in requesting donation varies, and we will be working toward a more consistent use of their knowledge and skills."
"The protocol will still be based on research and clinical experience to incorporate best practices," she says. "We must be alert for different divisions of responsibilities in this health care system. What remains the same is the focus on family needs."
The implementation project will last 12 months. The first six months of the collaborative intervention in each hospital involves developing and implementing a framework for a more optimal donation process, comprising a formalized donation protocol, a designated team within the hospital with primary responsibility for carrying out the donation protocol, and a system for ongoing monitoring. The intervention will be followed by a six-month monitoring period to ensure that long-term changes are successfully institutionalized.
The project in each province will be tailored to reflect regional variations in the health system. In Edmonton, where the Capital Health Authority is sponsoring the project, a unified Donation Committee has been established with representatives from both the University of Alberta Hospital and Royal Alexandra Hospital. This committee will establish one protocol and make decisions for both hospitals.
"This unified Donation Committee is similar to the one established at Grant/Riverside Methodist Hospitals in Columbus, OH, as part of the Partnership/University HealthSystem Consortium project," says Beasley. "In both countries, the trend is towards alliances of hospitals, leading to consistency of practices across hospitals. It should prove to be an efficient way to do the project."
At the first Donation Committee meeting in Edmonton in April, members reviewed the data from the Medical Records Review and staff surveys conducted in the diagnostic phase of the project, set up goals for increasing donation, and began to work through the elements of the protocol. Interviews with key staff involved in donation have already been completed.
In May, active work began at Toronto Hospital, starting with in-depth interviews of a wide range of staff involved in organ donation situations. On the basis of the interviews, as well as analysis of Medical Records Review, a multi-disciplinary donation committee will be convened to begin building the new system.
In both cities, the organ procurement team will be integrally involved: the Human Organ Procurement and Exchange program (HOPE) in Edmonton and the Multi-Organ Retrieval and Exchange program (MORE) in Toronto.
Two major hospitals in Montreal--Québec-Sacré Coeur Hospital and Notre Dame Hospital--will continue the ambitious diagnostic project that has already reviewed donation performance and hospital attitudes in 13 Canadian hospitals. The team will use data collection instruments translated into French by the international Donor Action program. All collateral materials, such as posters announcing the start of the project, also have been translated into French. Comments from the French staff surveys will be translated and entered into The Partnership's database for comparison to other hospitals.
The project is a collaborative funding model, with major funding provided by Novartis Pharmaceuticals Canada and a portion of costs matched by participating hospitals, regional health authorities, and the Kidney Foundation of Canada.
"For Novartis, this project represents an efficient and fruitful way to address the donation dilemma in Canada," says Christine Robert, product manager, Immunology, Novartis Pharmaceuticals Canada. "We are proud to support the implementation of Donor Action in Canada, and believe its success will be enhanced through genuine working partnerships among the key stakeholders in Canada."
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Partnership research, projects highlighted in transplant media
The Partnership/University HealthSystem Consortium (UHC) project is making news in a variety of transplant-related publications, including two articles in the December 1997 issue of Transplantation Proceedings that represent the first publications to come out of the project:
In "Determinants of Familial Consent to Organ Donation in the Hospital Setting," a chapter in Clinical Transplants 1997, data from a number of studies suggest that the care the family receives at the hospital strongly influences consent decisions. "The challenge ahead is to transform these findings into standard, accepted practice in hospitals across the country so that families faced with terrible loss receive appropriate support, allowing them to consent to donation," say authors Patrick McNamara and Carol Beasley of The Partnership.
Transplant Video Journal highlighted the Partnership/UHC project in its Fall 1997 edition. Filming was conducted at The Medical College of Virginia and included interviews with Carl Fischer, executive director and UHC chairman; Scott Eldredge, director of Service Line Administration; Andrew Lasser, chief operating officer; Paige Castello, LifeNet transplant coordinator; and Carol Beasley and Holly Franz of The Partnership.
Partnership research and in-hospital projects were featured in the November 1997 issue of Contemporary Dialysis & Nephrology:
For a copy of any of these articles, contact The Partnership's Communications Department.
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At this time, according to Moritsugu, families are experiencing and reacting to many factors, including the hospital setting--both physical and inter-personal--surrounding the crisis; the heroic efforts at salvaging the life of a loved one; the tragedy of an untimely death; the confusion of the event; the fear of the uncertain and the unknown; the emotional turmoil of the family; and the responsibility they and the hospital staff face for a decision as permanent as donation.
"With all the effort we pour into raising donor awareness, it ultimately all comes down to the moment of truth, the moment of decision," he said. "We can just about toss everything right down the drain if we don't do a good job in this--what I call the peri-donation environment--in better preparing the family for this moment."
Moritsugu's personal experiences as a donor family member, the result of two separate automobile accidents four years apart, illustrate the range of positive and negative experiences. In the first instance, "we the family felt supported and nurtured in our grief," he said. "At the point of being asked whether we wanted to donate my wife's organs and tissues, we were ready to do so."
But his second experience produced very different feelings. "As our time in the hospital went on and we interacted with staff, we became increasingly negative to the system and its people and the way they were treating us," he said.
To hospital staff who say they don't have the resources to meet the needs of grieving families, or who claim that caring for potential donor families is an unreasonable addition to an already full plate, Moritsugu answers, "If that is your response, then we have lost the battle in this public health crisis."
"Providing just a bit of civility and humanity to the family and to the loved ones in this peri-donation environment is an insignificant price to pay to benefit from the successes of increased organ donor awareness. In light of all the other costs associated with the transplant system, this small investment is insignificant compared to what the return can be," he said.
Concluding his advice to the donation leaders gathered at the forum--some moved to tears by his personal account--Moritsugu said, "Everything we do should and must focus on this human aspect of transplantation. Those human aspects include the transplant candidate patient, the organ donor patient and the donor family patient, who is in as much need of care as everyone else. I believe we need to better train and sensitize all the individuals who come in contact with the family. Each one will have an impact on the family, how the family feels supported and how the family will respond."
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Program summary: Partnership/UHC Project Forum
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Keynote speaker at the forum's opening dinner was Kenneth P. Moritsugu, MD, MPH, assistant surgeon general and donor husband and father. Participants were welcomed by C. Edward Schwartz, UHC executive vice president, who called the forum a prime example of UHC's philosophy and practice of peer-to-peer learning. He credited David Burnett, MD, UHC vice president, with the idea for holding this forum. Carol Beasley, Partnership managing director, began the second day with a project overview. She outlined the interim project outcomes, which include potential donors identified and a donation request made of the family in 98 percent of the cases. In almost half of these requests, all three factors for an optimum request--decoupling, private setting, and hospital/OPO collaboration--are present, while another quarter of the requests include two of the three factors. The data so far have shown dramatically higher consent rates when all three factors are present. "All of this is the result of a highly efficient set-up of new systems for organ donation," said Beasley. |
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Panel 1: Effective In-Hospital Coordinator Teams
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"When I hear everyone speak, I hear that we're all doing this a little bit differently," said Tartaglia. The Pastoral Care staff and residents at MCV were assigned the role of Family Communication Coordinators. Faced with challenges such as resident turnover, limited medical knowledge and the need to learn and do at once, Tartaglia has increased the team leader's involvement, limited the team size, and provided more group supervision, case review and mentoring. |
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| At Ohio State, the initial call to activate the donation protocol goes to a beeper, which allows screening before the IHC is called. The IHCs rotate call, with each serving one full week at a time. Hinkle recently increased the team size because IHCs are juggling many roles, and during the first months, more calls than expected came in. She is closely monitoring the effectiveness of the IHCs and the problem of burnout to determine how long IHCs can tolerate these calls plus their regular job. "But all families deserve this care," she emphasized. |  |
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The Family Support Person role at Iowa was originally assigned to the Social Work Department. Now the hospital is turning to an individually selected team, according to Witte, with selection based on communication, time management and process management skills, as well as support for donation. "It is essential to empower team members by clarifying their roles and responsibilities, and giving them the authority to make decisions and achieve the protocol's goals," she said. Panel 2: Coordination of the Critical Care Team
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Despite initial resistance at her OPO to the organ donation project, Gantt said, "There's been a paradigm shift in our view of ourselves as a service organization. There's always room for improvement in hospital development for an OPO." With the benefit of learning opportunities provided by working with an outside organization, Life Connection is now actively involved in the project, and is refining its practice, providing support to the hospital, and continuing to build the OPO/hospital relationship. "The core concepts for success are communication and multi-level involvement of both the OPO and the hospital," she said. |
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Kuthy noted that the keys to collaborative practice include good lines of communication, clearly defined roles and responsibilities, ongoing evaluation and feedback, and accountability. "We need more immediate feedback so we can be accountable for our actions," she said. MCV has addressed the challenges in its donation project through the administration's support and commitment, peer prompting, open dialogue with LifeNet, and case follow-up.
Speaking from a physician's perspective, Gagliardi said, "Introduction of the IHC has relieved us of a burdensome process, while still allowing us to retain control of decision-making and interaction with the family. IHCs didn't take this away from us, as much as facilitate our involvement. The IHC is the safety net."
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Panel 3: Institutional Ownership
"How do you get people excited about this?" asked Kelsten. "Medical leadership is critical. Before the project is in place, you need to identify stakeholders and get buy-in. Afterwards, feedback is essential. We need to get better at sharing data and providing regular feedback." |
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As a first step in getting institutional buy-in for Maryland's Donor Advocate Program, Hooker said, "We had to educate our hospital board of directors that not all deaths are viable donors." To keep the concept of organ donation ever-present in the organization, her hospital uses articles in their newsletters, as well as positive reinforcement to individuals and units participating in donation. Nitschmann pointed out that the "donor pool has dropped dramatically" at UTMB in the past four years, but referral and approach rates are currently at 100 percent. Refocusing efforts included: hospital ownership through a name change for the donation team and high level administrative support; quality management feedback; accountability through a team leader and additional faculty advisors; and education. |
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Scenes from the Forum:
With the goal of "achieving donation excellence," physicians, nurses, administrators, clergy, and social workers from leading hospitals and organ procurement organizations across the nation gathered in Chicago to share their successes and challenges.
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Living donation shows protocol variations; little donor potential being realized
In an exploratory study of attitudes, opinions and practices regarding living donation, a picture is emerging that is very similar to cadaveric donation--wide variations in donation protocols, practices and rates, with the result that little donor potential is being realized.
In fact, at the 20 transplant centers performing the most kidney transplants in 1994, the percentage of kidneys from living donors ranged from eight to 43 percent. "When a range like this appears in benchmark figures, it usually means that some hospitals are handling it better and that others could learn from them," says Carol Beasley, Partnership managing director.
A survey, conducted by The Partnership and published in the October 1997 issue of the American Journal of Kidney Diseases, asked 275 nephrologists and kidney transplant surgeons about living donation. Although 90 percent said they were supportive of living related donation, there is wide variation in how living donation is handled.
One major issue appears to be that many potential donors are not being asked. Thirty-eight percent of the respondents reported no formal policy for offering the option to either the donor or the recipient. There were different viewpoints about who on the transplant team ought to talk with patients about living donation, and more than a quarter of the surveyed physicians use no tools or guides to assist in explaining the procedure.
"We suspect that a variety of practices have developed in this field that have not been compared to find out whether superior approaches exist that might warrant broad adoption," say authors Beasley; Alan R. Hull, MD, Renal Management Inc.; and J. Thomas Rosenthal, MD, UCLA Medical Center. "The decision to pursue living donation brings with it an array of medical, ethical and psychosocial concerns that must be met for informed consent for living donation to occur."
Currently, more than 39,000 people are waiting for kidney transplants in the U.S. In spite of overwhelming public support for organ donation, the number of cadaveric donors has plateaued. However, the number of living kidney donors has increased 45 percent in the past five years.
Increasing kidney transplantation by means of living donation is a treatment option that is being considered by a greater number of patients and their physicians. Survey respondents did express concerns, particularly about living unrelated donation, including possible health risks, coercion of potential unrelated donors, and lack of a family support system for either the donor or the recipient. "The consensus, however, appears to be that living donation is a safe and reasonable option for some families," says Beasley.
Based on estimates provided by survey respondents, the authors believe there could be an eligible pool of 9,200 living related donors, nearly three times higher than the current number of living donors.
"Given the benefits to patients on the waiting list for kidney donation, our estimate of the potential for living donation suggests that we need to explore whether there are ethically acceptable ways to encourage more family members and friends to undergo evaluation," says Dr. Hull. "We are confident a set of well-grounded approaches can be identified that will lead to better care for donor candidates and prospective donors, as well as higher rates of living donation."
For a reprint of "Living Kidney Donation: A Survey of Professional Attitudes and Practices," contact The Partnership's Communications Department.
Living donation recommendations
Leaders in the kidney transplant community should focus on concrete objectives to optimize living donation. The recommendations of Carol L. Beasley, Alan R. Hull, MD, and J. Thomas Rosenthal, MD, include:
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In-Hospital Coordinators (IHCs) have high levels of comfort with facilitating the organ donation process and working with families, according to a survey administered to 25 IHCs and nine team advisors at hospitals participating in the Partnership/UHC project. The goal of the survey was to assess the readiness of these teams to facilitate the organ donation process in their hospital.
The survey asked about comfort in three primary areas: communication with and support of families; collaboration with the organ procurement organization (OPO); and coaching clinical staff. IHCs reported high levels of comfort in all three areas.
Despite efforts to actively involve IHCs in the donation process, they are not utilized as often as planned. Team advisors reported that actual participation in the process steps was lower than optimal levels of involvement.
One obstacle mentioned frequently was clinical staff, usually physicians, not adhering to the protocol. IHCs and advisors reported that physicians were less likely than nurses to follow the protocol, accept the involvement and guidance of the IHC, and respect their role in the organ donation process. Thirty-seven percent mentioned the lack of awareness and buy-in among physicians as a concern at their hospital. Additional concerns included the process of brain death declaration and issues with potential donor suitability.
"The common thread in the responses was concern about how to develop a communication plan with the doctor and get the doctor to adhere to the protocol," says Chaplain Mary Whetstone-Robinson, Decedent Care Coordinator and IHC Administrative Advisor, Riverside Campus, Grant/Riverside Methodist Hospitals in Columbus, OH. "If the IHC is present on the unit, the doctors have been very open to developing a communication plan. If the IHC is not immediately on the unit at the time, the doctors haven't waited for the IHC to be paged and return so the IHC can be present for the conversation with the family."
She believes IHCs are respected within the hospital for their role. At Riverside, they are an interdisciplinary team that includes critical care nurses and members of the medical social services and pastoral care departments. Though it means taking calls during off-shifts and weekends, there are five nurses on a waiting list to take the IHC training.
In the first five weeks after the protocol was enacted at Riverside in March, there were four activations of the donation protocol--including one the first day. "We need to emphasize that the brain death protocol and the organ donation protocol are two separate things," says Whetstone-Robinson. "While the brain death protocol focuses on clinical and medical assessment, the organ donation protocol focuses on the family, family support and communication."
Donation protocols are being implemented at project hospitals across the nation. "IHCs have the special role in the donation protocol of making sure that families are given all the support and information they need," says Holly Franz, Partnership manager of hospital projects. "They guide communication, making sure that donation is brought up at the right time, with care and compassion."
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