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EXECUTIVE
SUMMARY
Introduction
One
of the Nation’s most pressing public health issues is the
widening gap between the supply and demand for organs and tissues.
To raise awareness about the vital importance of organ and tissue
donation to the Nation’s health and to increase donation
rates, U.S. Secretary of Health and Human Services (HHS) Tommy
G. Thompson initiated the Gift of Life Donation Initiative in
April 2001. The “Organ Donation Breakthrough Collaborative”
is the most recent component of Secretary Thompson’s initiative.
Its purpose is to generate significant, measurable increases in
organ donation by helping the national community of organ procurement
organizations (OPOs) and hospitals to quickly identify, learn,
adapt, replicate, and celebrate “breakthrough” practices
that are associated with higher donation rates. Further, it is
designed to enhance the understanding of existing knowledge as
well as contribute new and vital information about increasing
organ donation rates. In particular, its goals are to:
- Increase
the average conversion rate of eligible donors from the current
average of 43 percent to 75 percent in the Nation’s largest
200 hospitals;
- Increase
donations by up to 1,900 donors per year;
- Increase
transplantations by 6,000 per year; and
- Help save
lives of thousands of people each year and prevent up to 17
deaths per day.
The first
phase of the Organ Donation Breakthrough Collaborative consists
of the identification of breakthrough or “best” practices.
Subsequent phases include learning these practices, replicating
the practices, and celebrating successes. This general approach
is intended to be consistent with contemporary collaborative models
of identifying and spreading improvements in health care systems.
This report presents a set of overarching principles and best
practices associated with higher rates of organ donation that
were identified based on site visits, in-depth face-to-face discussions,
and other data collection involving selected OPOs and hospitals
across the country.
Study
Design, Methods, Limitations
A qualitative case study approach was used to identify and describe
best practices associated with higher organ donation performance.
Six OPOs and 16 affiliated hospitals were selected that are among
the higher performers nationally based on rates of consent and
organ donation in their communities. Background information was
gathered and reviewed on selected OPOs and hospitals and discussions
with nearly 300 representatives of OPO and hospital staff were
conducted about factors that contribute to organ donation. Data
and observations were synthesized and analyzed to formulate overarching
principles and best practices. The study sample consisted of the
following OPOs and hospitals:
- New England
Organ Bank (Newton, MA) and: Beth Israel Deaconess Hospital,
Boston Medical Center, Brigham Women's Hospital, Massachusetts
General Hospital (all Boston)
- LifeLink
of Florida (Tampa, FL) and: Lakeland Regional Medical Center
(Lakeland), Tampa General Hospital (Tampa)
- University
of Wisconsin Hospital & Clinics Organ Procurement Organization
(Madison, WI) and: Gundersen Lutheran Hospital (Lacrosse), Theda
Clark Regional Medical Center (Neenah), University of Wisconsin
Hospital & Clinics (Madison)
- Mid-America
Transplant Services (St. Louis, MO) and: Barnes-Jewish Hospital
(St. Louis), St. John’s Mercy Medical Center (St. Louis)
- LifeGift
Organ Donation Center (Houston, TX) and: Ben Taub General Hospital
(Houston), Memorial Herman Hospital (Houston)
- Donor Alliance
(Denver, CO) and: Denver Health Medical Center (Denver), Memorial
Hospital (Colorado Springs), St. Anthony Central Hospital (Denver)
While this
study is an initial step at identifying and sharing “what
works” in organ donation, it has certain methodological
limitations, as follows.
- Small sample.
Given the available time and resources, this study was only
able to conduct a limited number of site visits. Certain best
practices might not have been identified within the scope of
this study, may not have been confirmed as such given a larger
sample of observations, or may be artifacts or otherwise specific
to sampled institutions and therefore would not be applicable
to other institutions.
- Selection
of higher performers. Consent and conversion rates were analyzed
from the Organ Procurement and Transplantation Network (OPTN)
database to identify OPOs and hospitals that were promising
sites for studying potential best practices. These data were
self-reported by OPOs and may not accurately reflect the performance
of all OPOs and hospitals. Further, these data tracked only
referred “eligible” potential donors as defined
by HRSA, excluding non-referred eligible donors, medically suitable
organ donors older than age 70, and “non-heart beating
donors,” and thereby may undercount OPO and hospital achievements.
- No control
group. This study did not compare the practices of higher performing
OPOs and hospitals with the practices of lower performing organizations.
- Halo effect.
Labeled as higher performers, respondents may have identified
more practices as “best” than they would have without
that label.
- Limited
perspectives. Although information was collected about potential
best practices from a wide range of OPO and hospital staff,
it is possible that some best practices were overlooked by not
involving other parties with perspectives not encompassed in
this study. In particular, the opportunity to hear the perspectives
of donor families on the organ donation process was not possible
given the limited study scope.
Overarching
Principles
The process of organ donation is complex and delicate
and relies on multiple parties working together toward common
goals. The potential for organ donation is most often preceded
by a tragic event. Parties involved in organ donation are keenly
aware that families come to these situations in shock, usually
having last seen their loved ones under normal circumstances.
Supporters of organ donation view this as an opportunity to realize
something that is life-affirming from something terrible, providing
a “gift of life.”
Visits to
OPOs and hospitals revealed that there is no single best approach
or “magic bullet” for success. Successful donation
involves working simultaneously toward optimizing the outcomes
during all events in the process: identification and referral
of a potential donor, consent, recovery, and transplantation.
While no 2 hospitals or OPOs visited conducted the organ donation
process in the very same way, the underlying messages of these
higher performers were largely consistent. A set of common principles
emerged across sites that appear to contribute to success. In
the subsequent section, more specific practices and strategies
put these principles into operation.
1.
Integrate organ donation fully into routine roles and responsibilities.
Organ
donation performance benefits from fully integrating the organ
donation process into the routine roles and responsibilities of
hospital staff. Some hospitals have been implementing organ donation
for decades. These hospitals often are led by individuals who
consider organ donation to be firmly embedded in the hospital
mission and culture, and support it accordingly. These hospitals
may have influential critical care physician or nurse leaders
who view organ donation as part of end of life care, and they
lead and teach this by example. Other hospitals have institutionalized
organ donation practices more recently. In either case, organ
donation is integrated into hospital policies and protocols, medical
records systems, training, staffing, finances, data collection,
and quality improvement in the manner of other services.
2.
Set high standards for donation performance to reduce the unacceptable
shortage of life-saving organs.
Despite
their high performance, the OPO leadership and management and
key hospital staff who were consulted strive continuously to improve.
OPOs and hospitals establish clear, often “stretch”
goals for their organizations and intensive care units. For OPOs,
the goal is to increase the number of organ donors; for hospitals,
the usual goal is to refer all potential organ donor cases to
the OPO as soon as possible. They embrace the increasing expectations
for OPOs and hospitals to close the gap between organ supply and
demand. They are motivated, not discouraged, by observations of
decreasing donor pools and declining donor potential.
Goals or performance
standards direct OPO operations. Leaders invest resources into
activities with the highest likelihood of achieving goals. Hiring,
supervision, and recognition are linked to performance. OPOs redefine
their goals annually or via longer-term strategic plans.
Organ donation
is an infrequent event; any dip in performance or prolonged status
quo triggers the higher performing OPOs and hospitals to reassess
goals and revise approaches to improve results. Several of the
OPOs and hospitals visited actively experiment with new approaches
to improving performance.
3.
Involve OPO and hospital staff in ongoing standards setting and
redesign of means to achieve these standards.
Goal-focused
and innovative approaches are possible because they are informed
and implemented by skilled and dedicated OPO and hospital staff.
There is a joint awareness and commitment among both OPO and hospital
staff to meet goals. OPO staff become aware of the performance
expectations of their positions during the hiring process; for
most OPOs, this practice appears to be more recent. While staff
expectations are high, leaders and managers provide support and
flexible working conditions within which staff are able to carry
out their duties. Staff are given responsibility, autonomy in
decision-making, opportunities to provide feedback to improve
the process, and new challenges.
As in other
aspects of health care, hospitals perform better with clear guidelines
for different aspects of the organ donation process, so that there
is no confusion about roles and responsibilities. OPOs work jointly
with hospitals to develop, update, and improve protocols, and
ensure that staff are educated in how to follow them. Some hospitals
have donation committees in which OPO and hospital staff collaborate
on reviewing protocols, identifying potential problems, and implementing
solutions. OPO and hospital staff also review performance data
on a regular basis in these or other meetings to assess and improve
outcomes.
4.
Hold OPOs, hospitals, and their staff accountable for achieving
these standards and recognize the staff accordingly.
OPOs
and most hospitals increasingly set performance standards for
organ donation and assess actual performance against these. In
addition to being accountable for referring 100 percent of deaths
to their OPOs, hospitals regularly review OPO data on timely referrals,
family approaches, consent rates, and donations to determine how
well they are following organ donation protocols. OPO and hospital
staff identify weak points or errors in the process, plan ways
to resolve these, and implement improvements accordingly.
Accountability
among hospital staff may be driven by hospital administration,
other champions for organ donation within the hospital, or OPO
staff. Some hospital staff remarked that reporting data by intensive
care unit fosters a healthy competition among units within the
institution. OPOs recognize or “celebrate” organ donation
successes in hospitals. Hospitals with transplant programs often
celebrate transplant successes as well. OPO staff are cognizant
of their performance relative to other OPOs across the country.
Most OPO leaders and managers regularly evaluate staff performance
against certain benchmarks. These evaluations are used to inform
personnel decisions and, in some instances, are the basis for
incentives to staff.
5.
Establish, maintain, and revitalize a network of interpersonal
relationships and trust involving OPO and hospital staff, donor
families, and other key agents.
Organ
donation operates within, and depends upon, an extensive array
of interpersonal relationships. The OPOs visited establish, maintain,
and revitalize relationships with all levels of hospital staff
as well as other individuals or organizations with roles in the
organ donation process, including donor families, medical examiners/coroners,
EMS staff, and community leaders. The critical path of organ donation
is mediated, and can be slowed or stopped, by any one of a large
group of agents. Relationships with all of these agents contribute
to overall performance; one misstep in the process can have a
negative impact on outcomes. Maintaining and forming new relationships
help to identify and overcome potential problems.
6.
Collaborate to meet the range of needs of potential donor families
and achieve informed consent to donate.
Potential
donor families are typically thrust into these circumstances in
shock and in great need. An integrated OPO and hospital approach
to meeting the wide range of needs of potential donor families
is also more likely to result in an informed decision to donate.
Hospital staff are the first to interact with and provide support
to families of potential donors as they work to save the patient’s
life. Most staff report that the organ donation process works
best when hospital staff call the OPO as soon as possible after
the potential donor presents in the hospital. Early referrals,
before brain death is determined, allow time for hospital staff
to interact with OPO staff regarding the status of brain death
testing and family reaction to the situation as well as allow
OPO staff the time to evaluate whether the patient is eligible
to donate.
There is a
range of views concerning the assignment of responsibility to
approach families regarding donation. While consent rates in many
sites have increased in association with the shift in this role
from hospital staff to OPO staff specially trained for this purpose,
hospital staff are the designated requestors in some instances.
Clearly, both approaches can work in their own contexts, which
arise from professional, institutional, and community antecedents.
Preparing
the family for imminent death contributes to informed decision-making
and successful organ donation. Further, during the consent process,
OPO staff, often with hospital staff present, can answer questions
from family members about brain death and organ donation. In the
event that families initially refuse to donate, OPO staff will
seek to determine whether the family is denying the request to
donate as such, or is denying the request at that time for another
reason, which may justify reapproaching the family.
7.
Conduct ongoing data collection and feedback to drive decision-making
toward performance improvement.
All
of the OPOs and hospitals visited rely on data to plan, monitor
and measure their performance. While donors per million population
has been used for OPO certification, it was not reported to be
a useful indicator for monitoring or setting goals for OPO or
hospital performance. The key measures tracked by all OPOs and
used to inform organ donation operations in hospitals include,
but are not limited to: donor potential, referrals of deaths,
medical suitability, consent rate, conversion rate, organs recovered
per donor, and organs transplanted.
All of the
OPOs visited conducted regular death record reviews (involving
regular review of the medical records of all their hospitals)
to determine donor potential at each site. OPO staff conducted
death record reviews more frequently at hospitals with higher
donor potential, usually about 20 percent of the hospitals within
OPO service areas.
The ability
of OPOs and hospitals to employ data-driven decision-making also
depends on the ability of OPOs to collect various organ donation
performance data and share them with hospitals in a timely and
systematic fashion. Most OPOs reported having systems in place
to track, analyze, and disseminate organ performance data.
Best
Practices
The
15 best practices described in this report refer to actions of
OPOs and hospitals that appear to be associated with higher organ
donation performance and are capable of being replicated in other
OPOs and hospitals. More than one best practice may support or
enhance the individual overarching principles cited above. For
each best practice, the body of this report provides several specific
strategies or examples used to achieve or implement it, along
with other supporting evidence. The best practices are as follows.
1.
Orient organizational mission and goals toward increasing organ
donation.
OPOs
and hospitals demonstrate goal-focused leadership and management
toward improving organ donation performance, including orienting
operations toward measurable outcomes and making organ donation
an expected, routine process of the organization.
2.
Do not be satisfied with the status quo; innovate and experiment
continuously.
None of the OPOs and hospitals reported being satisfied
with their current level of performance. In fact, some noted that
maintaining the status quo is regressive. These entities regularly
implement new, innovative strategies.
3.
Strive to recruit and retain highly motivated and skilled staff.
Both
OPOs and hospitals attributed their higher than average performance
to their skilled, motivated, and tenured staff. Given high turnover
in the industry, they are highly attentive to staff recruitment
and retention.
4.
Appoint members to OPO board who can help achieve organ donation
goals.
In
most of the sites, OPOs organized their boards or advisory structures
to advance all of the interests of the OPO, including donation,
procurement, and placement of organs. Boards are comprised to
promote collaboration and mitigate conflicts via professionally
diverse composition and balanced representation of organ donation
and transplantation interests.
5.
Specialize roles to maximize performance.
Various
key roles in organ donation are assumed by different actors. At
least 3 critical roles are: family support, clinical coordination,
and hospital relations. OPO and hospital staff are assigned particular
roles according to their professional strengths, experience, and
performance.
6.
Tailor or adapt the organ donation process to complementary strengths
of OPO and individual hospitals.
High
performing OPOs and hospitals do not approach organ donation in
the same way in all settings. With experience, and over time,
they tailor their approaches based on their respective strengths,
experience, performance, and the broader needs and context of
their institutions and communities.
7.
Be there: integrate OPO staff into the fabric of high potential
hospitals.
Among
the sample of higher than average OPO and hospital performers,
there is a high level of ongoing, routine interaction between
OPO and hospital staff. OPO staff do not simply arrive on the
scene at the time of a potential donation; they are well recognized
in the settings of their affiliated hospitals.
8.
Identify and support organ donation champions at various hospital
levels; include leaders who are willing to be called upon to overcome
barriers to organ donation in real time.
Hospital
champions advocate organ donation, link the hospital to the OPO,
facilitate the process of organ donation in hospitals, and break
down institutional and other barriers to donation. OPOs endeavor
to identify, support, and maintain relationships with these champions.
9.
All aboard: secure and maintain buy-in at all levels of hospital
staff and across departments/functions that affect organ donation.
OPO
and hospital personnel do not rely on champions alone to achieve
high levels of performance. They articulate the importance of
“top-down, bottom-up and sideways buy-in,” that is,
identification with and commitment to organ donation. OPOs use
diverse and creative strategies for securing and maintaining buy-in.
10.
Educate constantly; tailor and accommodate to staff needs, requests,
and constraints.
Hospital
staff in particular attributed higher than average performance,
in part, to the repeated education they receive and provide to
others in organ donation. Educational interactions address topics
such as brain death criteria; donor identification, referral,
consent and recovery processes; mechanisms for matching organs
to recipients; transplantation processes; recipient care; bereavement
care; and criteria for donation after cardiac death.
11.
Design, implement, and monitor public education and outreach efforts
to achieve informed consent and other donation goals.
OPO
and hospital staff expressed differences of opinion on the impact
of public education and outreach efforts on organ donation consent
and conversion rates. Hospital respondents tended to give greater
weight to the role of public education campaigns; OPO leaders
more often found little or no causal relationship between such
efforts and organ donation performance. Most hospital and OPO
staff would concur that this type of education is a best practice
when it has a specific purpose and continuing or improving it
is linked to measurable outcomes.
12.
Referral: anticipate, don’t hesitate, call early even when
in doubt.
One
of the most important messages that OPOs convey in education sessions
and via regular contacts with hospital staff is to call as early
as possible to facilitate consent and organ recovery. Among the
hospitals visited, there is a common interest and willingness
to make early referrals to the OPO and to consult its experts
regarding potential donations. OPO personnel have cultivated this
inclination by teaching the early signs of brain death and emphasizing
the importance of not waiting until brain death declaration to
place a call to the OPO.
13.
Draw on respective OPO and hospital strengths to establish an
integrated consent process. One size does not fit all, but getting
to an informed “yes” is paramount.
Obtaining
consent can be an intricate process that is highly dependent on
the cooperation, skills, and responsiveness of OPO staff and hospital-based
physicians, nurses, pastoral care staff, and social workers. The
roles in the consent process are largely consistent across high
performing sites; however, they can be carried out by different
combinations of OPO and hospital staff. Interacting with a potential
donor family to achieve informed consent to donate usually entails
a sequence of time-sensitive events and carefully conveyed communications,
all within a context of trust.
14. Use data to drive decision-making.
All
of the OPOs and most of the hospitals cited the importance of
data-driven decision-making to improve organ donation and focus
their resources appropriately. Using data to inform and document
decisions helps OPOs and hospitals to maximize referrals, consents,
and donors and improve continuously. In particular, conducting
regular death record reviews in all hospitals helps to determine
those with the highest donor potential and ways to increase donations.
15.
Follow up in a timely and systematic manner. Don’t let any
issues fester.
OPO
staff, physicians, and nurses affirmed that timely and systematic
feedback is crucial to increasing awareness and improving organ
donation processes at hospitals, thereby maximizing the number
of early referrals and actual donors at hospitals. Immediate problem
solving is another contributor to success. OPO and hospital staff
emphasized that, when the organ donation process breaks down or
when an aspect of the process has been poorly handled, it must
be resolved as soon as possible so as not to adversely affect
future events. OPOs conduct follow-up both formally and informally,
using a variety of techniques.
Conclusions
Site
visits with 6 OPOs and 16 hospitals, revealed 7 overarching principles
and 15 best practices and accompanying strategies that appear
to be associated with high organ donation performance. Many of
these principles and best practices are interrelated, and many
of the strategies and examples gleaned from the OPOs and hospitals
support more than one principle or best practice. A noteworthy
example is the OPO practice of providing letters of thanks to
hospital staff following a donation, which is consistent with
principles and best practices concerning recognizing and celebrating
success, providing timely and systematic feedback, maintaining
buy-in, and maintaining a network of interpersonal relationships.
Best practices
can be viewed in the context of a systems approach to organ donation.
Some OPOs and hospitals explicitly manage organ donation using
a systems approach. Others implement various of its components.
In this systems approach to organ donation, goals are set by OPOs
and their governing bodies, and discussed with and adopted by
the hospitals in their service areas. These goals are set with
the intention of maximizing organ donation performance and improving
organ donation processes and protocols.
To be successful,
organ donation processes and protocols are implemented both within
and outside of the hospital setting by champions from among OPO
staff, hospital staff, and others, such as medical examiners,
EMS staff, and donor families. These processes and protocols span
hospital development activities, family support and bereavement
care, clinical support of potential donors, and follow-up.
Hospital development
focuses on building and strengthening the relationships between
OPO and hospital staff. Family support and bereavement care are
continuous, and focused on helping families by offering them emotional
support, information, and resources needed to deal with these
tragic situations. Processes and protocols related to the clinical
support of potential donors include identification of potential
donors, donor referrals, determination of medical suitability,
obtaining consent, stabilization of donors, locating recipients,
organ recovery and preservation, and, finally, transplantation.
Follow-up processes include those related to OPO-hospital staff
case debriefs, OPO follow-up with hospital staff regarding transplant
recipients, and OPO and hospital follow-up with donor families.
Finally, OPOs
and hospitals generate outcome data as a result of the implementation
of these processes. Data are monitored and analyzed within the
OPO and hospital settings to determine how well processes were
implemented and whether goals were achieved. Results of data analysis
continuously inform the organ donation process so that improvements
can be made over time and organ donation goals can be modified
accordingly.
I. INTRODUCTION
The shortage
of donated organs and tissues for transplantation is one of the
Nation’s most pressing public health issues. Despite advances
in medical research and technology that facilitated nearly 23,000
organ transplants, 46,000 corneal transplants, and 173 bone marrow
transplants in 2002, the gap between the supply and demand for
donor organs and tissues continues to widen. The national waiting
list for organs has grown to 81,000 people - with thousands more
in need of tissue or corneal transplants. Every day, on average,
68 individuals receive a life-saving organ transplant while 17
individuals die waiting.
To raise awareness
about organ and tissue donation as a national public health issue
and increase donation rates, U.S. Secretary of Health and Human
Services (HHS) Tommy G. Thompson initiated the Gift of Life Donation
Initiative in April 2001. This initiative comprises several components
targeting such groups as employers, the donation community (including
organ and tissue procurement organizations, donor families, and
related organizations), hospitals, States, departments of motor
vehicles, and the public to spread the message of organ donation.
Among these components are the following.
1. Workplace
Partnership for Life. This component promotes Federal government
collaboration with private corporations, organizations, and associations
to make donation education information available to their employees.
Through these partnerships, employees learn about, discuss, and
make decisions concerning the donation of organs, tissues, marrow,
and blood. More than 7,500 employers have accepted the Secretary’s
invitation to create these partnerships.
2. Model
Donor Card. HHS designed a model donor card that is consistent
with laws of the 50 States and the District of Columbia. The model
donor card allows individuals to indicate their desire to be a
donor and designate which organs or tissue they want donated.
The model donor card is currently available to the public on the
Web site of HHS’ Health Resources and Services Administration
(HRSA).
3. National
Forum on Donor Registries. For this component, the Secretary requested
the HHS Office of Inspector General (OIG) to conduct a study on
existing registries and hold a national forum to examine the potential
of, and guidelines for, registry development. The national forum
to examine donor registries was held November 29th and 30th, 2001.
The report summarizing the results of the forum and the OIG study
are posted on the HRSA Web site.
4. National
Gift of Life Medal. A national medal is being considered to present
to donor families.
5. Driver’s
Education Curriculum. HHS is developing a model curriculum to
incorporate into State driver’s education programs and high
school education programs.
On April 25,
2003, Secretary Thompson announced a sixth component to the Gift
of Life Donation Initiative: “Organ Donation Breakthrough
Collaborative.” Its purpose is to generate significant,
measurable increases in organ donation by helping the national
community of organ procurement organizations (OPOs) and hospitals
to quickly identify, learn, adapt, replicate, and celebrate “breakthrough”
practices of their colleagues that are associated with higher
donation rates. Further, it is designed to enhance the understanding
of existing knowledge as well as contribute new and vital information
about increasing organ donation rates. In particular, its goals
are to:
- Increase
the average conversion rate of eligible donors from the current
average of 43 percent to 75 percent in the Nation’s largest
200 hospitals;
- Increase
donations by up to 1,900 donors per year;
- Increase
transplantations by 6,000 per year; and
- Help save
lives of thousands of people each year and prevent up to 17
deaths per day.
The Organ
Donation Breakthrough Collaborative has 4 main phases: identification
of breakthrough or “best” practices, learning the
practices, replicating the practices, and celebrating successes.
This report presents results from the first phase of the effort.
Results include a set of overarching principles and best practices
associated with higher rates of organ donation that were identified
from site visits, in-depth face-to-face discussions, and other
data collection involving selected OPOs and hospitals across the
country.
On September
9th and 10th, 2003, HRSA will launch phase 2 of this effort by
conducting the first in a series of 3 workshops designed to support
rapid replication of breakthrough practices. These workshops will
convene successful OPOs and hospitals wishing to improve their
donation performance with other OPOs and hospitals to review and
discuss how to apply the breakthrough practices to their own organizations.
The format for the workshops is based on contemporary collaborative
models of identifying and spreading improvements in health care
systems. As part of phases 3 and 4, OPOs and hospitals will apply
practices in their own organizations and monitor and celebrate
anticipated successes.
The identification
of best practices was informed by previous efforts to better understand
organ donation practices and how they relate to performance. Specifically,
a meeting was held in June 2001 of 20 national experts in organ
donation to examine potential structural and process attributes
of OPOs and hospitals that are associated with higher rates of
organ donation. (See Appendix A for a list of participants.) The
meeting yielded a framework for the organ donation process and
a formative evaluation approach to promote future investigation
of the correlates of high organ donation rates.
The body of
this report is devoted to observations of best practices. Section
II provides the study methodology, including site selection, data
collection and synthesis, and data limitations. Section III presents
the study findings, including overarching principles of the organ
donation process, profiles of selected OPOs and hospitals visited,
best practices, and implementation issues. Section IV presents
the conclusions of the report.
II.
STUDY METHODOLOGY
A qualitative case study approach was used to identify and describe
best practices that are associated with higher organ donation
performance. OPOs and affiliated hospitals were selected that
are among the higher performers nationally based on rates of consent
and organ donation in their communities. Background information
was gathered on selected OPOs and hospitals, interviews were conducted
with a broad range of OPO and hospital staff about factors that
contribute to success in organ donation, and data and observations
were synthesized and analyzed to formulate overarching principles
and best practices.
A.
Site Selection
Selection
of OPOs and hospitals for the study started with the 300 hospitals
with the highest consent rates (i.e., the number of persons for
whom consent was given to donate organs as a percentage of the
total number of persons eligible for organ donation). The study
sample included 6 OPOs and 16 hospitals. After first choosing
the OPO sample, a sample of hospitals affiliated with the selected
OPOs was identified.
1.
OPO Sample
According
to performance data from the Organ Procurement and Transplantation
Network (OPTN) January 2003 database (for the year August 2001
through July 2002), the 300 hospitals with the highest consent
rates were affiliated with 51 OPOs. These 51 OPOs were ranked
according to the highest consent rate of any one of their respective
affiliated hospitals as well as the median consent rate among
their affiliated hospitals. OPOs with fewer than 3 affiliated
hospitals among the highest performing 300 hospitals were excluded.
From among
the 14 OPOs with the highest consent rates and median consent
rates greater than the national mean (i.e., consent rates greater
than 50 percent) , a sample of 6 high performing OPOs was selected
for the study. (See Appendix B for a listing of the 14 OPOs considered
for the study sample.) Volume of cases, geographic variation,
and unique characteristics of donation practices (e.g., hospital-based
OPO, in-house coordinator staffing model) were considered in the
final sample selection. The OPOs selected for analysis included:
- New England
Organ Bank (NEOB), Newton, MA;
- LifeLink
of Florida (LifeLink), Tampa, FL;
- University
of Wisconsin Hospital & Clinics OPO (UWHC OPO), Madison,
WI;
- Mid-America
Transplant Services (MTS), St. Louis, MO;
- LifeGift
Organ Donation Center (LifeGift), Houston, TX; and
- Donor
Alliance (Donor Alliance), Denver, CO.
2.
Affiliated Hospital Sample
A
sample of hospitals was selected by identifying all hospitals
affiliated with each of the 6 high performing OPOs and ranking
them by 2 measures of hospital performance: rate of consent per
eligible donor and rate of medically suitable donors per eligible
donor. Two to 4 of the hospitals that ranked highest in these
2 measures were selected. (Consent and conversion rates were greater
than or equal to 60 percent and 50 percent, respectively.) In
selecting the hospitals, OPOs’ perceptions regarding which
hospitals contributed most to their success were considered. Appendix
C lists the hospitals visited.
Due to time
and resource constraints, selection of sites was limited to 6
OPOs and 16 hospitals and excluded hospitals that were located
more than 150 miles from their affiliated OPOs. Data were collected
for community hospitals only, which thereby excluded Veteran’s
Administration, Department of Defense, and Public Health Service
(Indian Health Service) hospitals. Also excluded were children’s
hospitals and hospitals with fewer than 150 beds, as only a small
proportion of organ donations occur in these types of hospitals.
B.
Data Collection and Synthesis
Invitations
were extended by mail and through follow-up telephone calls, to
OPO and hospital leadership to participate in the study. All of
the selected OPOs and hospitals accepted.
Background
information was collected from the six OPOs through a pre-site
visit telephone interview process prior to visiting the OPOs and
their affiliated hospitals. Supplemental data were collected on
characteristics of OPO governance, staff, training and education
programs, various organ donation protocols, and other OPO practices.
In addition, secondary data were verified on individual hospital
characteristics and services.
Throughout
the site visit interviews, data were collected to identify best
practices of OPOs and affiliated hospitals that lead to higher
organ donation performance. A series of in-person discussions
were conducted with OPO and hospital staff. OPOs and hospitals
recommended key informants for these discussions. Depending on
the preferences and availability of key informants at each OPO
and hospital site, discussions were conducted either individually
or in a group. Individual discussions ranged from 30 to 90 minutes
in length; group discussions lasted as long as 2 hours.
Discussions
with OPO and hospital staff did not follow a strict format. The
purpose of these discussions was to determine what the informants
perceived, from their various perspectives, to be the factors
that contributed to the higher performance of their OPO and/or
affiliated hospitals. Informants usually identified what they
considered to be the several most important factors or practices
associated with high performance. More extensive probing of informants’
initial observations, and inquiring about general areas of potential
that they did not cite initially (which varied across informants),
provided the opportunity for informants to identify other relevant
characteristics.
Probes spanned
such areas of organ (and in some cases tissue) donation as:
- Commitment
and governance;
- Financial
and budgetary issues;
- Contextual
and facility characteristics;
- Staffing;
- Referral
response and other practices;
- Planning,
outreach, evaluation and quality improvement;
- Technological
capacity and data collection; and
Collaboration.
This study
did not address organ transplantation, specific medical/clinical
best practices which optimize organ preservation, or surgical
techniques in organ procurement as such. However, some OPO and
hospital staff noted these topics in the context of, for example,
the transition from donation to procurement to transplantation,
communication between donation staff and procurement teams, and
the role of feedback from the transplantation process to the donation
process.
Standards
for answers included concrete, descriptive language; consistency;
and evidence where available and relevant. Wherever possible,
opinions were grounded with examples; when they were not, they
were recorded as ungrounded for study purposes.
In total,
292 individuals were interviewed for this study – including
OPO employees and hospital physicians, nurses, and pastoral care
staff. Exhibit 1 shows the distribution of interviewees by their
site and professional role.
Exhibit 1: Interviewees by OPO Affiliation
OPO
|
OPO
STAFF |
HOSPITAL
STAFF |
TOTAL
INTERVIEWEES |
PHYSICIANS
|
NURSES
|
HOSPITAL
ADMINISTRATORS |
PASTORAL
CARE & SOCIAL WORKERS |
New England Organ Bank Newton, MA |
22 |
17 |
37 |
10 |
5 |
91 |
LifeLink of Florida
Tampa, FL |
13 |
7 |
8 |
2 |
0 |
30 |
University of Wisconsin Hospital & Clinics OPO
Madison, WI |
7 |
12 |
30 |
5 |
5 |
59 |
Mid-America Transplant Services
St. Louis, MO |
12 |
8 |
6 |
5 |
5 |
36 |
LifeGift Organ Donation Center Houston, TX |
12 |
1 |
5 |
3 |
1 |
22 |
Donor Alliance
Denver, CO |
19 |
5 |
20 |
5 |
5 |
54 |
Total
Interviewed |
85 |
50 |
106 |
30 |
21 |
292 |
Qualitative
data from on-site interviews were analyzed in a debriefing process.
Internal debriefings were conducted after each site visit during
which study team members reviewed site visit experiences and observations.
Also, themes were raised at these debriefings that were tested
during subsequent site visits. After the site visits were completed,
the data were synthesized and analyzed to assemble a set of best
practices associated with higher organ donation performance.
C.
Data Limitations
As
opposed to many other processes or interventions in health care,
there is no recognized set of best practices in organ donation.
Research findings have suggested specific strategies for gaining
informed family consent to donate their loved ones’ organs,
e.g., decoupling discussion of brain death from the request or
making the request in a private setting. However, various recommended
strategies in organ donation are not well substantiated in practice,
have not been replicated in multiple settings, and are otherwise
debated. While this study is an initial step at identifying and
sharing “what works” in organ donation, it has several
limitations:
- Small
sample. Given the available time and resources to complete this
study, only a limited number of site visits were conducted for
this study. Even based upon the limited sample of OPOs and hospitals,
it is apparent that organ and tissue donation practices vary
widely across the country. As a result, certain best practices
might not have been identified within the scope of this study.
Also, certain practices considered to be “best”
based on their appearance in some or all of this limited sample
might not have been confirmed as such given a larger sample
of observations. Similarly, some best practices among the sample
of OPOs and hospitals may be artifacts or otherwise specific
to those institutions, and therefore would not be applicable
to other institutions.
- Selection
of higher performers. Consent and conversion rates were analyzed
from the OPTN database to identify OPOs and hospitals that were
promising sites for studying potential best practices. These
data were self-reported by OPOs and may not accurately reflect
the performance of all OPOs and hospitals. Further, these data
tracked only referred “eligible” potential donors
as defined by HRSA, excluding non-referred eligible donors,
medically suitable organ donors older than age 70, and “non-heart
beating donors” (also known as “donors after cardiac
death” or “asystolic donors”) and thereby
may undercount OPO and hospital achievements. To address, in
part, the potential limitations of the selection of OPOs and
hospitals, the findings of this study are subject to a vetting
process that provides for staff of other OPOs and hospitals
to review, edit, and confirm the best practices identified here.
- No control
group. This study did not compare the practices of higher performing
OPOs and hospitals with the practices of lower performing organizations.
Including such controls in this study would have enabled a more
valid distinction between practices that simply co-exist with,
but do not contribute to, higher performance, and those practices
that exist more often in higher performing organizations and
less often in lower performing organizations.
- Halo effect.
The data on organ donation performance were retrospective and
assessed prior to selecting OPOs and hospitals for study; therefore,
performance could not have been affected by being selected for
study. However, OPO and hospital staff were aware that they
were participating in a study based on the higher performance
of their organizations. Therefore, OPO and hospital staff may
have been more likely to identify certain of their practices
as being “best” than they would have had their organizations
not been labeled as high performers.
- Limited
perspectives. The practices that contribute to higher organ
donation performance involve or affect many parties. Although
information was collected about potential best practices from
a wide range of OPO and hospital staff who, as a group, are
very likely to be aware of most if not all potential best practices,
it is possible that some best practices were overlooked by not
involving other parties with perspectives not encompassed in
this study. In particular, given the limited study scope, the
opportunity to hear the perspectives of donor families on the
organ donation process was not possible given the limited study
scope.
III.
STUDY FINDINGS
This
section presents overarching principles of the organ donation
process, profiles of the OPOs and hospitals visited, best practices,
and implementation issues.
A.
Overarching Principles
The
process of organ donation is complex and delicate and relies on
multiple parties working together toward common goals. Key informants
used several analogies to describe the process: “a delicate
dance,” “a well-oiled engine,” and “a
fragile web of interconnecting strands.” The potential for
organ donation is most often preceded by a tragic event. Parties
involved in organ donation are keenly aware that families come
to these situations in shock, usually having last seen their loved
one under normal circumstances. Supporters of organ donation see
it as an opportunity to realize something that is life-affirming
from something terrible, providing a “gift of life.”
Visits to
OPOs and hospitals, having critical roles in the organ donation
process, revealed that there is no single best approach or “magic
bullet” for success. Successful organ donation involves
working simultaneously toward optimizing the outcomes during all
events in the process: identification and referral of a potential
donor, consent, recovery, and transplantation. While no 2 hospitals
or OPOs visited conducted the organ donation process in the very
same way, the underlying messages of these higher performers were
largely consistent. This report presents a set of common principles
observed at each site that appear to contribute to success. In
some instances, these principles are made explicit by certain
OPOs or hospitals; in other instances, they are implicit in the
orientation, organization, or actions of OPOs and hospitals. In
the subsequent section, more specific practices and strategies
are identified that put these principles into operation. (See
Exhibit 2 for a list of overarching principles.)
Exhibit
2: Overarching Principles
1. Integrate organ donation fully into routine roles and responsibilities.
2. Set high standards for donation performance to reduce the unacceptable
shortage of life-saving organs.
3. Involve
OPO and hospital staff in ongoing standards setting and redesign
of means to achieve these standards.
4. Hold OPOs,
hospitals, and their staff accountable for achieving these standards
and recognize the staff accordingly.
5. Establish,
maintain, and revitalize a network of interpersonal relationships
and trust involving OPO and hospital staff, donor families, and
other key agents.
6. Collaborate
to meet the range of needs of potential donor families and achieve
informed consent to donate.
7. Conduct
ongoing data collection and feedback to drive decision-making
toward performance improvement.
1. Integrate Organ Donation Fully Into Routine Roles and
Responsibilities.
Organ
donation performance benefits from fully integrating the organ
donation process into the routine roles and responsibilities of
hospital staff. Some of the hospitals visited had been implementing
organ donation for decades. These hospitals often are led by individuals
who consider organ donation to be firmly embedded in the hospital
mission and culture, and support it accordingly. These hospitals
may have influential critical care physician or nurse leaders
who view organ donation as part of end of life care, and they
lead and teach this by example. Other hospitals visited appeared
to have institutionalized organ donation practices more recently,
by formalizing existing practices, strengthening their relationships
with their OPO, responding to the Medicare Conditions of Participation,
among others. In either case, organ donation is integrated into
hospital policies and protocols, medical records systems, training,
staffing, finances, data collection, and quality improvement efforts
in the manner of other services. Among the many comments by hospital
clinical and managerial staff on this subject were: “Organ
donation is part of our daily business,” “It’s
what we do,” “Organ donation is just another kind
of care for patients and families,” “It’s an
opportunity to change a tragic experience for families into something
good,” “Organ donation is one of the patient’s
and family’s many rights,” and “It’s the
right thing to do.”
The sites
with fully integrated organ donation processes report that they
welcome the relationship with their OPOs. One of the key roles
of OPOs is to work with hospital staff to establish and improve
organ donation processes in a way that complements, rather than
disrupts, hospital operations. Because organ donation is an infrequent
event, and given the staff turnover in hospitals, regular education
and communication is needed to define, refine, and implement protocols;
clarify roles and responsibilities of staff; and solve problems
as they arise.
- Additional
evidence that hospitals adopt organ donation as routine include
the following.
- A few
hospitals reported that, at the request of senior hospital executives,
OPO and hospital staff brief them regularly on organ donation
performance.
- In some
intensive care units, the nurse staffing model changes when
a potential donor presents so that donor cases have a one-to-one
nurse-to-patient ratio.
- Several
hospitals have institutionalized organ donation through standing
donation committees. These committees are forums for all hospital
staff from different departments to review issues related to
organ donation, set policy, address educational needs, and overcome
barriers.
- Some nurse
managers reported that hiring criteria include expectation of
delivering high-quality end of life care, of which organ donation
is a part.
- Orientation
and training for new nurses also involves experiencing a donation
case.
2.
Set High Standards for Donation Performance to Reduce the Unacceptable
Shortage of Life-Saving Organs.
Despite
their high performance, the OPO leadership and management and
key hospital staff strive continuously to improve. OPOs and hospitals
establish clear, often “stretch” goals for their organizations
and/or for individual intensive care units. For OPOs, the goal
is to increase the number of organ donors; for hospitals, the
usual goal is to refer all potential organ donor cases to the
OPO as soon as possible. OPOs and hospitals embrace the increasing
expectations for them to close the gap between organ supply and
demand. They are motivated, not discouraged, by observations of
decreasing donor pools and declining donor potential.
Goals or
performance standards direct all levels of OPO operations. Leaders
invest energy and resources into activities with the highest likelihood
of achieving goals. Hiring, supervision, and recognition are linked
to performance. Standards are set to increase performance in:
- Referrals
of all deaths;
- Referrals
of medically suitable donors;
- Number
of early referrals;
- Number
of family approaches;
- Rates
of consent;
- Rates
of donation;
- Number
of organs recovered per donor;
- Number
of transplants.
OPOs redefine
their organizational goals on an annual basis or via longer-term
strategic plans.
Organ donation
is an endeavor of small numbers; any dip in performance or prolonged
status quo triggers OPOs and hospitals to reassess goals and revise
approaches to improve results. As one OPO leader reported, “While
staff may think they are doing all they can to increase the number
of donors, there is always more to be done.”
In order to
realize their goals, several of the OPOs and hospitals actively
experiment with new approaches to improving performance. For example,
some OPOs applied practices from other industries, such as the
pharmaceutical industry, to build relationships with hospitals.
Both OPOs and hospitals noted their willingness to take risks,
such as spending resources on a new staffing model that was unproven
in their environment or experimenting with new techniques to maximize
viability of donated organs. OPO governing boards and/or hospital
executives in most of the sites support quality improvement efforts
by OPO or hospital management toward organ donation goals.
3.
Involve OPO and Hospital Staff in Ongoing Standards Setting and
Redesign of Means to Achieve These Standards.
Goal-focused
and innovative approaches are possible because they are informed
and implemented by skilled and dedicated OPO and hospital staff.
In many of the sites, discussion and monitoring of performance
standards extends beyond OPO leadership. Most levels of OPO staff
and hospital champions for organ donation are aware of and committed
to meeting expectations for performance. They monitor their performance
regularly and retool when necessary in order to improve.
OPO staff
become aware of the performance expectations of their positions
during the hiring process; for most OPOs, this practice appeared
to be a more recent event. OPOs take special care in training
and retaining staff to match skills to specific roles. While staff
expectations are high, leaders and managers provide support and
flexible working conditions within which staff are able to carry
out their duties. Staff are given responsibility, autonomy in
decision-making, opportunities to provide feedback to improve
the process, and new challenges.
Opportunities
to participate in setting and achieving standards include regular
team meetings reviewing potential and actual donor cases, performance
review discussions, and department meetings. At one OPO, organ
donation performance hit a plateau and leadership consulted each
member of the hospital development team about what practices were
and were not contributing to performance. The results of these
discussions helped to direct the leadership’s decision to
adopt a more specialized staffing model.
Standards
setting and redesign occurs in hospitals as well, often facilitated
by OPO staff. As in other aspects of health care, hospitals perform
better with clear guidelines for different aspects of the organ
donation and procurement process, so that there is no confusion
about roles and responsibilities. Hospitals work jointly with
OPOs to develop, update and improve protocols, and ensure that
staff are educated in how to follow them. Some hospitals have
donation committees with which OPO staff are invited to collaborate
on reviewing protocols, identifying potential problems, and implementing
solutions. Hospital and OPO staff also review performance data
on a regular basis in these or other meetings to assess and improve
outcomes.
4.
Hold OPOS, Hospitals, and Their Staff Accountable for Achieving
These Standards and Recognize the Staff Accordingly.
OPOs
and most hospitals visited enforce performance standards. Leaders,
managers, and staff monitor OPO data to compare actual to expected
performance. OPO and hospital staff identify weak points or errors
in the process, plan ways to resolve these, and recognize good
performance.
Most OPO leaders
and managers establish clear performance benchmarks according
to which staff are regularly evaluated. Such benchmarks are used
to inform personnel decisions. OPO staff are often given incentives
to perform well. Some OPOs set annual organizational, departmental,
and individual goals and tie staff performance to compensation.
Others offer staff financial incentives, such as bonuses, for
meeting or exceeding monthly goals. Annual performance reviews,
in addition to staff meetings throughout the year, provide forums
for OPO managers and staff to review performance.
In addition
to being accountable for referring 100 percent of deaths to their
OPOs, hospitals review OPO data on timely referrals, family approaches,
consent rates and donations regularly to determine how well they
are following organ donation protocols. Some hospital staff remarked
that reporting data by intensive care unit fosters a healthy competition
among units within the institution. Hospitals emphasized the importance
of clear communication between the OPO and the hospitals to ensure
that performance expectations are clear.
Accountability
among hospital staff may be driven by hospital administration,
other champions for organ donation within the hospital, or OPO
staff. At NEOB transplant centers in Boston, hospital administration
emphasize attention towards organ donation performance measures,
stimulated in part by a directive from the State Commissioner
of Health to consider organ donation performance among the hospitals’
quality indicators. At other hospitals, referring physicians and
nurse managers hold their staff accountable to performance.
OPOs recognize
or “celebrate” organ donation successes in the hospital.
If hospitals have transplant programs, they often celebrate transplant
successes as well. OPOs are not punitive and do not assign blame
if problems at hospitals are identified. Rather, they share responsibility
with hospitals for understanding and fixing problems.
5.
Establish, Maintain, and Revitalize a Network of Interpersonal
Relationships and Trust Involving OPO and Hospital Staff, Donor
Families, and Other Key Agents.
The
organ donation process operates within, and depends upon, an array
of interpersonal relationships. The OPOs visited establish, maintain,
and revitalize relationships with all levels of hospital staff
to facilitate organ donation. Hospital staff interact with personnel
across different departments as well as administration. Both OPO
and hospital staff interact with other individuals or organizations
that play a role in any part of the organ donation process, including
donor families, medical examiners/coroners, EMS staff, and community
leaders. The critical path of organ donation is mediated, and
can be slowed or stopped, by any one of a large group of agents.
Relationships with all of these agents contributes to overall
performance; one misstep in the process can have a negative impact
on outcomes. Maintaining and forming new relationships help to
identify and overcome potential problems.
Successful
OPOs consistently invest in developing relationships with the
hospitals in their service areas. Hospitals, and trauma centers
in particular, are the sites of service where most of the potential
donor cases present. While still responsive to all of the hospitals
in their service area, OPOs concentrate most of their relationship-building
efforts in the hospitals with the highest donor potential. The
majority of hospitals cited the close relationship with their
OPO as one of the major factors contributing to their higher consent
and conversion rates.
Relationship-building
in hospitals is traditionally known as “hospital development”
in the OPO community. While some of the OPOs visited still use
this term, others find that it does not adequately capture the
goals they seek to achieve in hospitals. The primary goal of hospital
development staff is to serve as liaisons or consultants to facilitate
organ donation in hospitals. They build relationships with key
hospital staff who will support the process of organ donation
in their settings.
Building relationships
with hospitals puts organ donation on the “radar screen”
of key hospital staff when, for some, it would otherwise not be.
The outcome of relationships with hospitals includes:
- Establish
hospital trust in the OPO;
- Increase
awareness and knowledge of the organ donation process, which
increases referrals of potential cases to the OPO;
- Increase
identification and pursuit of education opportunities;
- Develop
policies to enhance organ donation;
- Increase
access of the OPO to high-level hospital staff to gain management
support of organ donation and to break down institutional or
professional barriers to organ donation;
- Elevate
organ donation cases to priority or emergency status in hospitals
as appropriate.
Contracts
between hospitals and OPOs are insufficient for facilitating successful
organ donation performance. Hospitals are extremely busy, often
stressed institutions facing competing demands and increasingly
tight resources. OPO relationship-building activities include
regular, frequent communication and networking, education, and
technical assistance.
OPOs offer
hospital staff a level of expertise and service that fills gaps
in certain hospital resources for organ donation, e.g., for education
sessions, protocols, and reporting. OPO staff establish hospital
trust by example, such as real-time accessibility, task follow-through,
and meeting the needs of donor families regardless of the donation
outcome. Both OPO and hospital staff visited also noted the value
of networking with other parties at the hospital that play a less
obvious but very important role in organ donation. For example,
some OPO and hospital staff interact with hospital trauma teams,
flight crews, or security staff to raise their awareness of organ
donation and the importance of early referrals to the OPO.
Relationships
with other key agents in the donation process can facilitate positive
outcomes. For example, some OPOs and hospitals noted that the
time their staff members have devoted to interactions with the
medical examiners or coroners has led to fewer cases in which
the medical examiner/coroner has denied permission to release
the potential donor’s body for organ donation. Some hospital
staff noted the importance of being able to work with transplant
teams. In some instances, transplant teams reportedly have arrived
at the hospital only interested in procuring organs, with little
apparent regard for others in the operating room. Such experiences
have left negative impressions about organ donation on hospital
staff, particularly nurses, which could pose a disincentive to
participate in future donor cases. In contrast, hospital staff
affiliated with other OPOs have remarked at the positive experience
of working with transplant teams who regard themselves as guests
in the donating hospitals, enhancing the flow and professional
reward of the procurement process. A couple of OPOs have strategically
delivered messages to transplant teams about the importance of
this relationship and regard for the environments in which they
are working.
Hospital and
OPO staff share the role of doing their very best to make donor
family experiences positive. Hospital staff develop initial relationships
with potential donor families, working to save their loved one’s
life as well as meet immediate family needs. Usually after brain
death is declared, though sometimes before, OPOs support hospitals
in providing care to families. After donation, OPO staff provide
detailed feedback to donor families at several intervals as part
of bereavement care through written and oral communication, remembrances,
and other activities. Donor families can be valuable advocates
for organ donation within their communities.
6.
Collaborate to Meet the Range of Needs of Potential Donor Families
and Achieve Informed Consent to Donate.
Potential
donor families are typically thrust into these circumstances in
shock and in great need. OPOs and hospitals reported that families,
in their grief, experience heightened emotions of disbelief, anger,
and sadness over the condition of their loved ones, doing their
best to comprehend the clinical prognosis while facing other pressing
interpersonal and logistical matters. Achieving informed consent
to donate is related to an integrated OPO and hospital approach
to meeting the wide range of needs of potential donor families.
Hospital staff
- usually physicians and nurses - are the first to interact with
and provide support to families of potential donor cases as they
work to save the patient’s life. In hospitals where the
social workers and/or chaplains are active members of the patient’s
critical care team, they assist nurses in meeting family needs.
Immediate needs include providing families with privacy, food
or drink, blankets for overnight stays in the hospital waiting
room, access to telephones for long-distance calling, transportation,
lodging, and other needed resources. Among the OPOs visited, LifeGift
was unique in that its in-house coordinators (IHCs) interacted
with families as extensions of hospital nursing staff, including
well before brain death. IHCs helped families address their immediate
needs to relieve some of the burden on hospital staff. IHCs did
not raise the matter of organ donation, however, until after brain
death testing.
According
to most respondents, the organ donation process works best when
hospital staff call the OPO as soon as possible after the potential
donor presents in the hospital. Early referrals, before brain
death is determined, allow OPO staff the time to evaluate whether
the patient is eligible to donate. OPO staff usually do not interact
with families at this time. OPO and hospital staff do not want
to introduce the possibility of organ donation to families if
their loved one is not medically suitable to donate.
Early referrals
allow time for hospital staff to interact with OPO staff regarding
the status of brain death testing and family reaction to the situation.
For eligible cases, hospital and OPO staff determine collaboratively
the best time to approach the family about a request to donate
as well as who should make this request.
Site visits
found a range of views (including polar-opposite ones) on the
assignment of responsibility to approach families regarding donation.
In some OPOs, such as LifeGift, this assignment clearly belonged
to OPO staff, i.e., the in-house coordinator, and hospital staff
were strongly discouraged by hospital leadership and OPO staff
to raise this topic with families. Indeed, in these instances,
historical consent rates were shown to increase in association
with the shift in this role from hospital staff to OPO staff specially
trained for this purpose. In other instances, such as in Wisconsin,
hospital staff are the designated requestors, while OPO staff
are available to support the request by answering questions as
necessary and otherwise coordinating the donation process. Clearly,
both approaches work in their own contexts, which arise from professional,
institutional, and community antecedents. Held in common is an
emphasis on continuous family care and a sequence of events leading
up to and following the request to donate involving close, well-understood,
and reliable collaboration among hospital and OPO staff. What
differs is the assignment of certain responsibilities to hospital
staff and OPO staff, respectively, during the course of this process.
Indeed, in some instances in a given hospital, these responsibilities
may shift given the needs of the family and specific circumstances.
Thus, rather than following a strict protocol, both the hospital
and OPO staff are making decisions that are in the best interest
of the family in the particular circumstances of the donation.
Preparing
the family for imminent death contributes to informed decision-making
and successful organ donation. Hospital personnel reported that
spending the time preparing the family for the possibility of
brain death facilitated the family’s understanding of their
loved one’s passing and readiness to make other necessary
decisions. Organ donation is often presented as one of many decisions
the family needs to make at the time of death.
During the
consent process, OPO staff, having been introduced to families
by hospital staff and often with hospital staff present, can answer
questions from family members about brain death and organ donation.
In the event that families initially refuse to donate, OPO staff
will seek to determine whether the family is denying the request
to donate as such, or is denying the request at that time for
another reason, which may justify reapproaching the family.
In a few hospitals,
hospital staff provide families as many opportunities as possible
to see their loved one in the intensive care unit. In this manner,
families are able to witness hospital staff working aggressively
to try to save their loved one’s life. Similarly, after
consent, OPO staff enable families to visit patients’ rooms
to have time alone with their loved ones before procurement.
As noted above,
OPO and hospital approaches to bereavement or aftercare were similar
across sites. Regardless of donation outcome, both OPO and hospital
staff were committed to giving the family the best possible care
at their time of loss.
7.
Conduct Ongoing Data Collection and Feedback to Drive Decision-making
Toward Performance Improvement.
All
of the OPOs and hospitals visited rely on data to plan, monitor,
and measure their performance. While donors per million population
has been used for OPO certification, it was not reported to be
a useful indicator for monitoring or setting goals for OPO or
hospital performance. The key measures tracked by all OPOs and
used to inform organ donation operations in hospitals include,
but are not limited to, those listed below. These measures are
consistent with goals set by OPOs.
- Donor
potential: the number of deaths in the hospitals that, based
on a set of criteria, demonstrate potential to be organ donors;
- Referrals
of deaths: the rate at which all hospital deaths are referred
to the OPO;
- Medical
suitability: determination of medical suitability of potential
donors by OPO, based on pre-determined criteria;
- Consent
rate: the number of consents divided by the number of requests;
- Conversion
rate: the number of actual donors divided by the number of potentially
medical suitable donors;
- Organs
recovered per donor: the number of organs recovered per actual
donor; and
- Organs
transplanted: the number of organs from an actual donor that
are successfully transplanted in recipients.
All of the
OPOs visited conducted regular death record reviews (involving
regular review of the medical records of all their hospitals)
to determine donor potential at each site. Findings informed OPO
strategic planning and decisions regarding where to invest OPO
resources. OPO staff conducted death record reviews more frequently
at hospitals with higher donor potential, usually about 20 percent
of the hospitals within OPO service areas.
OPOs collect
and share summary data on death, eligibility, referral, consent,
recovery, placement, and transplantation internally among staff
as well as externally with key hospital staff to monitor performance
and to ensure accountability. The OPOs anticipate how their actions
will affect performance outcomes. Hospital staff reported that
regular opportunities to share performance data raised their awareness
of organ donation and reported the benefits of following protocols
to maximize results.
The ability
of OPOs and hospitals to employ data-driven decision-making also
depends on the ability of OPOs to collect various organ donation
performance data and share them with hospitals in a timely and
systematic fashion. Most OPOs reported having systems in place
to track, analyze, and disseminate organ performance data. More
specific examples of using data to improve performance are provided
in the best practice on data-driven decision-making.
B.
Overview of OPO and Hospital Characteristics
The
OPOs visited included 2 in the South, 3 in the Midwest (Donor
Alliance in Colorado being the furthest West), and one in the
Northeast. Five of the 6 OPOs in the sample are independent entities;
UWHC OPO (Madison, WI) is the only hospital-based OPO. Four of
the 6 OPOs have tissue donation programs in addition to their
organ donation programs.
UWHC OPO is
the longest-operating OPO in the sample, at 37 years. NEOB (Boston,
MA) has the largest population in its service area, operating
budget, and number of full-time equivalent staff, and is second
to UWHC OPO in terms of years of operation. In operation for 16
years, LifeGift (Houston, TX) is the youngest OPO in the study
sample. LifeLink (Tampa, FL) has the smallest population in its
service area. Among the sites visited, the majority of OPO staff
have more than 3 years experience at their OPOs. (Exhibit 3 shows
a profile of selected characteristics of the 6 OPOs visited.)
The 6 OPOs
have a total of 718 hospitals in their service areas. LifeGift
has the most hospitals in its service area (187) while LifeLink
has the fewest (48). NEOB has the most transplant centers (12)
in its service area. All 16 hospitals visited are either Level
1 or Level 2 trauma centers, which usually see the most potential
donor cases. Many of these institutions are responsible for delivering
trauma services across their respective regions and routinely
care for large numbers of patients with acute conditions. Of the
16 hospitals, 9 are teaching hospitals and 8 are transplant centers.
There were
4 hospitals affiliated with NEOB, all of which are large urban
teaching hospitals with transplant centers, although the transplant
program at the public hospital is small. Two large trauma centers
were affiliated with LifeLink; one trauma center is also a transplant
center.
University
of Wisconsin Hospital & Clinics Organ Procurement Organization
is located in the University of Wisconsin Hospital & Clinics
system, a Level 1 trauma center and teaching institution. The
2 other hospitals affiliated with UWHC OPO are smaller (fewer
than 300 beds) suburban hospitals.
Two hospitals
affiliated with each of MTS and LifeGift were visited. All 4 of
these hospitals are large (more than 600 beds) institutions in
urban areas; one hospital affiliated with each of these 2 sites
is a teaching hospital. The sample of hospitals affiliated with
Donor Alliance included 3 hospitals, 2 of which are public. (Appendix
C lists hospitals in the sample and descriptive data about each.)
The remainder
of this section presents a brief summary of each OPO’s approach
to organ donation.
Exhibit 3: OPO Characteristics
Notes:
* In addition to the 91 FTE staff members, NEOB has 15 per diem
staff members, who are not included in the annual statistical
reporting.
** Consent rates are based on March 2003 OPTN database extract
(donor referral data reported by OPOs from August 2001 –
July 2002).
*** Average number of organs recovered per donor data are from
Scientific Registry of Transplant Recipients OPO Reports (July
1, 2001 – June 30, 2002)
C.
Key Attributes of OPOs
This
section profiles key attributes of the 6 OPOs visited, including
their overall approach to organ donation, governance structure,
staffing model, and approaches to community education and quality
improvement. Even among these higher-level attributes, there is
considerable variation. However, certain similarities among these
and aspects of commitment to organ donation may contribute to
higher performance.
New
England Organ Bank (Newton, MA)
Three approaches drive the New England Organ Bank’s (NEOB)
efforts to increase organ donation. NEOB attributes its higher
organ donation performance to its ongoing, collaborative relationship-building
with hospitals and transplant centers in the New England area,
its specialized staffing model in its higher potential hospitals,
and also its explicit systems approach to organ donation, which
involves planning, evaluation, identification of best practices,
feedback, and quality improvement in OPO operations. The following
organizational characteristics facilitate NEOB’s implementation
and achievement of these approaches.
NEOB has 3
main governance structures: a board of trustees, executive committee,
and medical oversight board, each with multi-state representation.
The board’s composition is consistent with the Centers for
Medicaid and Medicare’s (CMS) regulations. In order to mitigate
inherent conflicts of interest, NEOB enlarged its board to include
30 members to balance representation of the high number of transplant
centers in its service area with other hospital leadership and
community interests. While the board provides primary strategic
oversight to the OPO, it does not micro-manage. According to NEOB
leadership, the board entrusts the executive director and medical
director with the management of the OPO’s organizational
and clinical functions.
NEOB emphasized
its devoted staff and low staff turnover as contributing factors
to its higher performance. NEOB promotes a specialized, team approach
to organ donation comprising 3 types of specialized staff - a
donation coordinator, a family support counselor, and a hospital
development coordinator - assigned to meet the needs of hospitals
with the highest donor potential. NEOB management recruits candidates
from various backgrounds to apply for positions. Candidates are
subjected to a rigorous hiring process to ensure that staff are
highly qualified and aligned with the mission of the organization.
Once staff are hired, they undergo a formal training program tailored
to their specialized function. Though NEOB has performance targets
for staff, they are not given financial incentives to meet their
targets.
NEOB reported
that hospital education initiatives are important to facilitate
organ donation efforts. To this end, NEOB has been expanding its
hospital-based marketing campaigns in particular to promote its
best practices. Included in these initiatives are new marketing
materials, such as posters, newsletter articles, and script cards.
Also, NEOB is working to promote organ donation in the community
by working with the local media to increase awareness about organ
donation through a media newsletter.
NEOB emphasized
the quality improvement component of its systems approach as a
major reason for its success in organ donation. To facilitate
quality improvement, NEOB developed a data system that collects,
monitors, and tracks, by hospital, trends related to requests,
consents, organs recovered, and organs transplanted. NEOB reviews
these data with hospital leadership on a monthly basis. Formalized
feedback mechanisms such as weekly meetings with NEOB staff, monthly
meetings with hospital staff, post-donation debriefings with all
involved OPO and hospital staff, along with 2 data reporting mechanisms
(quantitative and more qualitative, subjective reports) are all
incorporated into quality improvement efforts. These efforts help
to ensure that NEOB and its affiliated hospitals maintain their
orientation to continually improving their organ donation practices.
LifeLink
of Florida (Tampa, Florida)
LifeLink of Florida (LifeLink) management has adopted a business
orientation to organ donation and procurement, with the goal of
increasing the supply of donor organs to save lives. LifeLink
attributes a variety of factors to its success, including a high
degree of executive staff involvement on all referrals, a committed
staff, shared capacities with the LifeLink Foundation, a service-orientated
approach with hospitals and medical examiners to develop and build
relationships, a collaborative relationship with Central Florida
Lions Eye Bank, and an ability to respond on-site to every brain
death referral.
LifeLink credits
the high involvement of its executive staff throughout the donation
process for some of its success. The LifeLink executive staff
and medical director help to screen all referral cases, providing
the vascular coordinator (analogous to the clinical coordinator
and family support roles in other OPOs) with support, input, and
real-time trouble-shooting during the donation process. LifeLink
noted that “support and direction from the top translate
into success and donor productivity.”
Another contributor
to LifeLink’s performance is its team of 24 staff. To ensure
that potential hires are aggressive, collaborative, assertive,
and able to work under stressful conditions, LifeLink uses a lengthy
“reality” interview process in which candidates meet
with staff and participate in actual organ referral and donation
events.
LifeLink and
its staff benefit from the broad capacity of the LifeLink Foundation
(Foundation). LifeLink is one of 4 OPOs under this umbrella, which
share a board of governors (primary overseer of OPO operations),
administrative staff, communications call center, public relations,
community outreach and education, and accounting/finance capacities
with the Foundation. In addition, the Foundation strategically
recruits high profile members of the Tampa business and civic
community to sit on the board of governors to increase awareness
about organ donation. To mitigate any conflicts of interest and
ensure innovation and fresh perspectives, LikeLink has incorporated
a mechanism for selecting and removing board members as well as
changing the composition and responsibilities of the members and
committees.
LifeLink’s
hospital development and medical examiner (ME) liaison staff align
OPO objectives with hospital and ME needs. This service-oriented
approach was reported to be a factor contributing to LifeLink’s
performance. OPO staff promote organ donation and provide services,
such as education about organ donation policies, to hospitals
and MEs to facilitate organ donation successes. LifeLink also
visits these hospitals and MEs regularly. LifeLink asserts that
regular interactions allow for timely resolution of any problems
and facilitate strong relationship-building.
In all of
LifeLink’s hospitals, no distinction is made between organ
and eye/tissue donation. LifeLink and the Central Florida Lions
Eye and Tissue Bank have a collaborative relationship that enables
nurses to call one number to refer potential organ and/or eye/tissue
donation. According to LifeLink, coupling organ donation with
eye and tissue donation, which occur at a higher frequency, increases
the visibility of, and referrals for, organ donation.
LifeLink encourages
hospital staff to make early referrals and OPO staff to respond
to every call, even those that may have no donation potential.
LifeLink views on-site response as part of its service to hospitals
as well as another opportunity to achieve its hospital development
goals. LifeLink evaluates every brain death, regardless of age,
medical history, or social history, and makes every effort to
determine if there are potential recipients for marginal organs.
LifeLink’s
operations are backed by a comprehensive evaluation and quality
improvement process. Starting from the point of referral for possible
donation, LifeLink tracks each case through its call center system
to the point of final donation outcome. Additionally, LifeLink
holds weekly staff meetings to review all referrals, responses,
problems, and hospital development activities. On a monthly basis,
LifeLink conducts death record reviews and the executive administration
reviews donor and referral data, including consent data, by hospital.
On a quarterly basis, LifeLink performs a quality assurance review
with hospital medical staff on donor outcomes and develops an
activity report to its board of governors.
University
of Wisconsin Hospital & Clinics (Madison, WI)
The University of Wisconsin Hospital & Clinics Organ Procurement
Organization (UWHC OPO) is one of 9 hospital-based OPOs in the
U.S. In this context, its organization and operations are driven
by the transplant program at UWHC. As the only transplant center
in the OPO’s service area, the UWHC transplant center receives
the vast majority of organs procured by the OPO. This proximity
facilitates close working relationships between UWHC’s transplant
surgeons and OPO staff, contributing to its above average performance.
Indeed, the executive director and medical director of the UWHC
OPO are transplant surgeons at UWHC. The executive director and
medical director of the OPO are both involved in screening and
accepting all donor referrals.
The OPO is
aggressive and focuses on pursuing the highest number of organs
recovered to serve the highest number of patients waiting for
transplants, while also providing rapid service to referring hospitals
in its service area. UWHC has an active donation after cardiac
death (DCD) program, with more than 500 non heart-beating donors
since 1974. In 2001, HRSA awarded UWHC OPO a grant to investigate
and improve DCD protocols. UWHC OPO is also conducting clinical
research in optimization of donor management.
Sharing UWHC’s
communication, administrative, and technological resources allows
the OPO’s small staff to focus on organ procurement activities.
The UWHC OPO staff of 12 people (10.25 FTEs) includes: an executive
director, medical director, manager of clinical services, 2 surgical
support staff, 4 organ procurement coordinators, 2 surgical recovery
coordinators, an outreach coordinator, and a clinic assistant.
In the last 3 years, UWHC OPO implemented a formal hospital development
program in order to receive accreditation of the Association of
Organ Procurement Organizations (AOPO).
The hospitals
in UWHC OPO’s service area report having long ago incorporated
organ donation identification, referral, and consent protocols
into their routine hospital operations. The UWHC OPO views hospital
staff as an extension of OPO staff, contributing to the achievement
of OPO goals. The OPO staff provides the guidance and support
for the physicians, nurses, and pastoral care staff in their service
area to participate in the entire organ donation process.
Hospital staff
are the primary requestors in UWHC OPO’s service area and
OPO staff are actively involved in educating these individuals
on the various aspects of the organ donation process. The OPO
conducts a designated requestor training program that is mandatory
for the physicians, nurses, and pastoral care staff who are requestors.
The OPO also conducts other ongoing training and case reviews
at hospitals to educate nurses and other hospital staff about
making referrals and other aspects of organ donation such as donor
management. UWHC OPO also hosts a biennial symposium on organ
donation and transplantation, which is a 2-day program of educational
sessions for health care providers addressing key issues in organ
donation and transplantation, including the challenges facing
organ donation and transplantation, the consent process, and current
advances in the field of transplantation.
UWHC OPO is
committed to providing ongoing hospital and community education
on the importance of organ donation and transplantation. Community
education events include presentations at local civic and charitable
groups, high schools, and organ donation displays in hospitals,
at sporting events, as well as at various other community events.
These educational outreach efforts contributed to a high-level
of awareness of donation and increased buy-in of organ donation
in both hospitals and the community at large. Hospitals also develop
their own relationships with donor families beyond UWHC OPO by
hosting annual picnics and dinners for families.
UWHC OPO integrates
quality improvement mechanisms into its functions. After every
organ donation case, UWHC OPO staff regularly follow up with hospital
staff through phone calls and in-person meetings to discuss the
case and address any hospital staff concerns or problems that
might have arisen. In addition, OPO staff regularly select and
present case studies of missed referrals or actual organ donation
cases to hospital nursing staff in order to address their questions
and improve the process at their hospitals.
Mid-America
Transplant Services (St. Louis, MO)
Mid-America Transplant Services (MTS) focuses on providing high-quality
professional services to the hospitals in its service area, concentrating
its resources in its high donation potential hospitals. MTS staff
described their strong relationships with referring physicians
as a contributing factor to their high performance. In addition,
MTS has a specialized and tenured staff that coordinates all aspects
of the organ procurement process from the time of referral to
the placement of organs. MTS reports that all levels of its staff
employ data-driven decision-making and direct their efforts towards
constantly increasing the number of organ donors. MTS also provides
financial incentives to staff who meet their performance targets.
MTS’
mission is to serve its region by encouraging and facilitating
organ and tissue donation and assuring the fair allocation of
procured organs and tissues. It is governed by a 30-member board
of directors that includes physicians, hospital administrators,
business leaders, and donor family representatives from its service
area. Board members are appointed by a nominating committee of
the MTS board. MTS board members serve an unlimited term of office.
MTS expects them to serve as champions in overcoming barriers
to organ donation, if needed. The board meets 3 times per year,
and has an executive committee and a medical affairs committee.
The OPO’s
75 employees comprise hospital development staff, clinical staff,
and dedicated family support staff. More than half of the staff
members have been with MTS for at least 3 years, and MTS management
staff have an average of more than 11 years of experience. MTS
attributes its high staff retention to several factors. MTS staff
members have very specialized roles in the organ procurement process,
assigned according to their professional backgrounds and strengths.
MTS gives staff members the flexibility to work from home. The
2 MTS operating rooms relieve hospitals of maintaining donors
in their beds and of disrupting their operating room schedules
for procuring organs. In addition, the on-site operating rooms
also provide a setting for clinical staff to learn new skills
and develop professionally.
MTS works
closely with the 4 transplant centers in its service area, and
maintains a high level of awareness among the medical staff at
all of its hospitals. The OPO hospital development staff focus
on maintaining high visibility in their high potential hospitals
as well as building very strong relationships with their referring
physicians and other referring staff. MTS achieves this by providing
a broad range of educational programs and services regarding donation
and transplantation for physicians, nurses, and pastoral care
staff at hospital meetings and in social settings. MTS’
hospital development staff also conduct death record reviews to
explore ways to improve their hospitals’ donation performance.
With its own
tissue bank, MTS works with hospitals to implement specific systems
for requesting organ and tissue donations and the recovery process
within each hospital. MTS seeks to improve these systems via feedback
from surveys that it administers to hospital staff every few years.
While not
a major focus of its investment in improving organ donation, MTS
seeks to educate the community by organizing special events and
presentations and seeking newspaper and radio coverage. MTS leadership
noted that promotion of the State donor registry had contributed
positively to organ donation performance. According to MTS, mailings
to area businesses have encouraged participation in the HHS Workplace
Partnership for Life Initiative and the State donor registry.
MTS constantly
strives to improve organ donation in its community. Toward achieving
its goals, MTS has begun several new initiatives. The OPO is focusing
on using organ donor registries in the 3 States in its service
area to improve consent and conversion rates. MTS’ hospital
development staff conducts death record reviews to explore ways
to improve their performance. MTS recently started a nurse advocate
program in which it gives key nurses at its high potential hospitals
special training intended to accelerate the referral process.
MTS is working to expand its pool of non-heart beating donors.
To date, 7 hospitals in the MTS service area have approved DCD
protocols.
LifeGift
Organ Donation Center (Houston, TX)
LifeGift Organ Donation Center (LifeGift) attributes much of its
high performance, including a 15 percent increase in recovered
organs during fiscal year 2001, to maximizing and concentrating
its resources in hospitals with high potential for donation and
procurement. Known as the “Core Concept,” the LifeGift
philosophy addresses a variety of areas, including turning potential
donors previously considered unsuitable into actual donors, maximizing
non-heart beating donors, improving consent rates, minimizing
lost recoveries, and improving organ yield. Toward that end, in
1996, LifeGift introduced its in-house coordinator (IHC) approach
by placing 2 full-time nurses in Houston’s 2 Level 1 trauma
centers.
LifeGift’s
leadership, particularly its president and CEO, attribute much
of its higher performance to the Core Concept. LifeGift seeks
to create an environment that promotes innovation, dedication,
independence, and accountability among its staff.
The Core Concept
also entails strong, transparent hospital partnerships. The IHC
program, in which OPO staff are fully integrated into hospital
operations, fosters these relationships. By “being there,”
as opposed to “going there,” these coordinators are
part of the hospital fabric. In addition to high visibility, this
role allows a ready means for continuous education of the hospital
staff, early referral (a 99 percent referral rate in 2002) and
identification of potential donors, and immediate problem-solving.
LifeGift has 3 main governance structures: a management team that
is responsible for overseeing the OPO’s 3 regions, a board
of directors, and the LifeGift Endowment. Of the 3, the 18-member
board of directors serves as the primary oversight body. The board
has 4 committees: 1) executive committee, 2) medical advisory
committee, 3) finance committee, and 4) benefits committee. LifeGift
also has 7 medical directors placed among its 3 regions.
LifeGift reports
devoting fewer resources to community outreach and education because
the OPO leadership has not seen evidence of a relationship between
these activities and increased organ donation rates. The OPO does
use volunteers to conduct education programs in the community
to heighten public awareness about organ donation.
LifeGift’s
quality improvement strategy includes a weekly conference call
among regional leadership to discuss current and planned activities
and to review organ donation performance. LifeGift indicates that
these standing weekly meetings stimulate competition among the
regions. At the hospital level, the IHCs meet regularly with medical
staff to present organ donation performance statistics and review
cases. These regular presentations also serve as learning opportunities
for hospital staff. Within the OPO, organ procurement staff meet
weekly to review the events of the previous week on a case-by-case
basis and to discuss other matters pertaining to performance.
Donor
Alliance (Denver, CO)
Role specialization and a collaborative approach to donation highlight
Donor Alliance’s strategy for maximizing organ donors. Faced
with data indicating decreasing donor potential in the region
in 2000, OPO leadership restructured staff within the OPO and
created 4 specialized staffing tracks in the organ donation process.
The new position of family support coordinator facilitates consents
and increases family support throughout the donation process.
The 4 family support coordinators generally have non-clinical
backgrounds, though they received extensive training in medical
suitability of organ donors. OPO leadership also split the duties
surrounding organ procurement into 2 roles. Organ placement specialists
focus on organ placement, and organ recovery coordinators focus
on the clinical management of the donor. Apparently unique to
Donor Alliance is the role of organ recovery specialist. This
person is a non-M.D. surgeon with extensive training and experience
in organ recovery. With this devoted specialist on staff, Donor
Alliance is able to avoid delays due to scheduling conflicts among
hospital surgeons and otherwise streamline procurement, which
may contribute to organ viability.
Donor Alliance
places great emphasis on hospital development. Six full-time personnel,
known as donation consultants, act as liaisons to the 100 hospitals
within the OPO service area. These personnel are responsible for
professional education, facilitating early referral, data collection
and monitoring, and feedback. Donation consultants also work with
coroners, medical examiners, and funeral directors throughout
the community. In those regions where there is no dedicated family
support coordinator, the donation consultant is involved in the
consent process.
Donor Alliance
conducts community education through an extensive public relations
program. The cornerstone of this outreach is promotion of the
Colorado Organ and Tissue Donation Registry. Instituted by the
Colorado legislature in October 2001, the donation registry enables
Donor Alliance to eliminate the traditional practice of seeking
permission from next-of-kin before recovering organs from donors.
The Colorado Donor Registry is considered an advance directive
and is irrevocable. The registry is updated every 24-hours by
the State department of motor vehicles (DMV). Donor Alliance anticipates
that a similar donor registry will be in place in Wyoming by July
2003.
Donor Alliance
has a 25-member, community-based board of directors that meets
5 times per year. According to OPO leadership, the board provides
oversight and has allowed considerable latitude for innovation
and risk-taking in recent years. In addition to the full board,
several committees meet on a regular basis, including the executive,
finance, medical advisory (tissue), medical advisory (organ),
ethics, professional development, and nominating committees. Two
medical directors are dedicated to organ and tissue procurement,
respectively. With the board’s approval, Donor Alliance
implemented a staff performance appraisal system 2 years ago that
ties performance relative to organizational, departmental, and
individual goals to compensation.
D.
Best Practices
The
best practices described in this section refer to actions of OPOs
and hospitals that appear to be associated with higher organ donation
performance and are capable of being replicated in other OPOs
and hospitals. The individual overarching principles cited above
may be supported or enhanced by more than one best practice. Consistent
with the scope of this study, these best practices do not address
organ transplantation. Also, while some best practices have implications
for donor management prior to transplantation (e.g., timing of
referral, efforts to remain apprised of new organ preservation
techniques), this study did not address specific medical/clinical
best practices, which optimize organ preservation or surgical
techniques in organ procurement.
OPOs and hospitals
visited embraced the idea of identifying and sharing best practices.
It is widely regarded that all parties stand to benefit from improved
performance by others, and the higher performing OPOs and hospitals
uniformly recognize that continuous improvement is necessary to
maintain, let alone improve, performance. Among these best practices,
some were explicitly identified by one or more OPOs and hospitals;
others surfaced through further investigation or emerged from
observations across sites. In some instances, OPOs and hospitals
observed before-and-after differences in organ donation performance
upon instituting certain practices. However, given the case study
approach involving assessment of practices in a limited set of
higher-performing sites, it is not appropriate to attribute strict
cause-and-effect relationships between these practices and higher
organ donation performance.
Most of these
practices appear to have evolved over time, including via trial
and error. Some OPOs have sought to replicate practices from peers
but needed to adjust them to work in their own environments. As
noted above, multiple agents and interventions can affect the
critical path of organ donation, so that an otherwise well-planned
process can be sidetracked by one or a small number of inappropriate
actions or decisions. (See Exhibit 4 for a depiction of the process
of organ donation.) As such, some best practices may not translate
into improved performance unless they are implemented together.
While OPOs
and hospitals share many of these practices, they are not all
implemented in the same way or by the same staff. The context
in which OPOs and hospitals operate can influence their implementation
strategy, as can the governance structure, or past experiences.
A description of each practice and the specific strategies and
examples used to achieve each practice are provided. (See
Exhibit 5 for a summary of best practices and strategies.)
Exhibit
5: Summary of Best Practices and Strategies
Best Practices Strategies
1: Orient organizational mission and goals toward increasing organ
donation.
- Orient
operations towards outcomes rather than processes
- Make organ
donation into an expected, routine process of the organization
- Apply
business principles to operations
2: Do not
be satisfied with the status quo; innovate and experiment continuously.
- Restructure
staff to achieve donation goals
- Implement
or plan to implement innovative applications of information
technology
- Remain
apprised of new interventions through professional consortia
and clinical research
- Be more
aggressive in donor management and pursue marginal donors and/or
non-heart beating donors
3: Strive
to recruit and retain highly motivated and skilled staff.
- Use various
practices to identify and recruit staff
- Offer
adequate orientation and training
- Create
a culture of collaboration and autonomy
- Offer
flexible work environments and other benefits
- Provide
opportunities for professional growth and development
4: Appoint
members to OPO board who can help achieve organ donation goals.
- Comprise
boards to promote collaboration and mitigate conflicts
5: Specialize
roles to maximize performance.
- Assign
staff to specific roles according to professional strengths
6: Tailor
or adapt the organ donation process to complementary strengths
of OPO and individual hospitals.
- Develop
and adapt organ donation process by assessing staffing
- Use plans
and data collection to facilitate the tailored approach
- Minimize
any burden that the organ donation process places on hospitals
7: Be there:
integrate OPO staff into the fabric of high potential hospitals.
- Dedicate
a position to hospital development
- Accept
OPO staff in hospitals and on intensive care units
- Maintain
high visibility and continuity
- Maximize
availability and accessibility
8: Identify
and support organ donation champions at various hospital levels;
include leaders who are willing to be called upon to overcome
barriers to organ donation in real time.
- Invite
hospital personnel to serve on the OPO board
- Target
hospital executives and other hospital leaders
- Identify
key referring physicians and nurses
9: All aboard:
secure and maintain buy-in at all levels of hospital staff and
across departments/functions that affect organ donation. •
Make OPO resources known to hospitals
- Build
trust and respect of all hospital staff
- Reinforce
the donation message among all levels of hospital staff
- Consistently
show appreciation to hospital staff for their efforts
- Celebrate
successes and communicate them internally or externally
10: Educate
constantly; tailor and accommodate to staff needs, requests, and
constraints.
- Target
education to referring staff
- Provide
opportunities for hospital staff to seek education on a regular
basis and in multiple ways
- Provide
incentives
- Tailor
education to accommodate hospital staff’s skills, preferences
and needs
11. Design,
implement, and monitor public education and outreach efforts to
achieve informed consent and other donation goals.
- Promote
State registries, if applicable
- Raise
awareness and provide opportunities for advanced discussions
of organ donation
- Target
public outreach efforts to specific ethnic groups
- Never lose
an opportunity to make a positive, lasting, and communicable
impression on donor families and others in the community
12. Referral:
anticipate, don’t hesitate, call early even when in doubt.
- Teach certain
clinical triggers
- Dispel
the many myths surrounding organ donation
- Have a
“go to” person that is responsible for organ donation
on units
- Be positive,
never punitive
13. Draw
on respective OPO and hospital strengths to establish integrated
consent process. One size does not fit all, but getting to an
informed “yes” is paramount.
- Start early
to understand family dynamics, monitor status, and support family
needs
- Work as
an OPO-hospital team to determine the right person(s) to raise
donation and make the request
- Ask at
the right time
- Ask in
the right way
- Reapproach
if needed
- Prepare
to adapt to particular family needs or requests to facilitate
organ donation
14. Use data
to drive decision-making.
- Conduct
regular death record reviews in all hospitals to determine those
with the highest donor potential
- Focus
more resources on hospitals with the highest donor potential
- Regularly
collect, monitor, and share referral, consent, and other organ
donation data to improve organ donation performance
- Survey
hospital staff to identify areas for improvement
15. Follow
up in a timely and systematic manner. Don’t let any issues
fester.
- Hold regular
OPO review sessions to debrief activities, discuss lessons learned,
discard practices that are no longer working, and learn from
peers
- Follow
up and provide feedback to hospital staff after each organ donation
case, including on the process as well as the outcome
- Provide
feedback to hospital staff about organ and tissue placement
and transplant recipients
- Follow
up with donor families after donation
- Resolve
problems in the organ donation process immediately
Best Practice 1: Orient organizational mission and goals toward
increasing organ donation.
The missions and goals of all of the OPOs studied directed
the actions of leaders and managers to increasing organ donation.
Hospitals, particularly management staff and the intensive care
and other unit staff most involved in organ donation, have integrated
organ donation into their broader health care missions and specific
performance goals. OPO and hospital leaders set, hold themselves
and their staff accountable to, and continuously refine or reset
their goals to improve organ donation performance. Most of the
OPO leaders reported that they invest resources only in activities
that are known, or are expected, to result in higher organ donation
performance. Resources are withdrawn from activities that do not
contribute to donation. Hospital leaders emphasized the importance
of making organ donation an expected, routine process of high-quality
hospital care.
OPOs
demonstrate goal-focused leadership and management by orienting
their operations toward outcomes rather than processes.
Critical to orienting the organization to outcomes is placing
less emphasis on process measures, such as counting interactions,
events, mailings, among other activities. While most OPOs continued
to monitor these activities, they monitor progress based upon
direct measures of donation. The OPOs integrated outcome measures
into all facets of OPO operations. For example, OPOs set annual
outcomes targets to which their staff are held accountable. They
regularly track performance, and use data systems to track results
at the staff member and organizational levels. Examples of OPO
orientation to organ donation performance include the following.
- LifeGift’s
Core Concept directs OPO staff to invest in hospitals with high
donation potential in order to: turn unsuitable donors into
suitable donors; improve consent rates; increase organ yields
per donor; identify DCD donors; and minimize any lost recoveries.
LifeGift invests less in public education efforts because it
cannot trace achievement of outcomes back to these activities.
- At NEOB,
MTS, LifeLink, LifeGift, and Donor Alliance, OPO leadership
sets performance targets for their staff (e.g., number of consents
per year). In some cases, OPOs provide financial incentives
for achieving these targets.
Hospitals
make organ donation an expected, routine process of the organization.
Many hospitals have a pro-donation environment that is conducive
to organ donation. Though OPOs help to maintain and, to some degree,
cultivate this pro-donation environment, much of this orientation
stems from hospital staff viewing organ donation as an expectation
of the organization or of their particular position. In this context,
organ donation is viewed no differently than any other service
the hospital provides and “is never really assumed otherwise.”
Similar to other hospital services, organ donation is viewed as
a “social good, ” “the right thing to do,”
and congruent with the hospital’s mission and goals of caring
for patients and their families. “It’s an opportunity
to change a tragic experience for families into something good.”
Hospitals foster the pro-donation orientation by promoting education,
drafting policies, and holding the organization and its staff
accountable for organ donation performance. Examples include the
following.
- Staff
of one Boston hospital noted that organ donation is something
that cannot be compromised; “Let’s make a deal is
not applicable when it comes to organ donation.” Hospital
staff view organ donation “as the right thing to do”
and not as a financial liability.
- At another
Boston hospital, staff noted that they view “organ donation
as a value “ that supports the hospital’s overall
mission.
- Staff of
one of LifeLink’s hospitals noted that its pro-donation
culture comes from the top-down and is infused throughout the
organization because “the passion for organ donation is
role-modeled” by the executive staff.
- In a UWHC
hospital, the pro-donation culture is fueled and further enhanced
by the community’s strong commitment to organ donation.
Given the hospital’s large medical transplant center status,
many community members and hospital staff have personal connections
to donation and transplant recipients. This personal connection
fosters hospital and community affinity to the organ donation
process.
- One Denver
hospital espouses a philosophy of patient advocacy in which
organ donation is one of the patient’s many rights. This
supports a pro-donation culture that contributes to organ donation.
The
application of business principles focuses attention on organ
donation performance. OPOs noted that the traditional
medical model of having transplant centers and surgeons manage
the organ donation process is less likely to be productive, given
insufficient managerial and business expertise and the potential
for conflicts of interest. Instead, some OPOs noted the importance
of viewing organ donation as a resource-driven enterprise that
applies a business orientation to achieve the organizational goal
of increasing organ donation. Several senior hospital administrators
of transplant centers noted the linkage of organ donation performance
and the success of their transplant services. Among the business
principles identified by OPOs are: developing strategic plans;
implementing the most efficient and effective practices; viewing
good relationships as a function of customer service; hiring,
allocating, and rewarding staff based on clear performance goals;
and investing in innovation. Examples include the following.
- To realize
economies of scale and improved organ donation performance,
LifeLink established a “one-stop shop” that houses
a transplant institute with transplant surgeons, medical histocompatibility
lab, and patient care center providing medical and ancillary
services that result in increased patient satisfaction and care.
- LifeLink
approaches referrals with a customer service orientation. In
order to serve the “customer” making the referral,
LifeLink streamlined its referral process. This OPO worked with
its affiliated tissue and eye bank to combine various referral
pathways into one so that the referring customer only has to
call one number regardless of donation type (eye/tissue/organ).
By integrating the various referral processes, LifeLink improved
relationships with nurses making referrals and diminished the
possibility of conflict or confusion between eye/tissue banks
and the OPO in responding to a referral. LifeLink and the eye
bank shared the costs of developing the referral software and
staffing the call-center.
- Four of
the 6 CEOs or executive directors of the OPOs visited have hospital
administration experience or business training. As a group,
they stressed that, historically, many OPOs have had institutional,
professional, social, or political goals that are not necessarily
aligned with increasing organ donation. Reorienting OPO operations
to achieve that production goal enables application of business
principles that have been effective in other industries.
- MTS begins
each year with a new set of goal-focused initiatives. This year’s
efforts include improving conversion rates, studying ways to
expand referrals, instituting standing clinical orders for potential
donors, and pursuing more non-heart beating donors. MTS is also
focusing its outreach efforts on promoting the State donor registry.
- Some senior
hospital administrators of transplant centers reported reviewing
their hospitals’ organ donation data regularly, along
with data from other hospital services. They noted the importance
of organ donation performance on transplant success.
Best
Practice 2: Do not be satisfied with the status quo; innovate
and experiment continuously.
Across
the sites, OPO and hospital leaders and managers demonstrate a
pursuit for excellence, insisting that there is always room for
improvement. These leaders concur that maintaining the status
quo in the evolving health care and socioeconomic environment
would not only halt their advancement, but would be regressive.
One OPO leader stated, “Anytime you get comfortable, you’re
dead.” Leaders also emphasized shrinking donor pools, requiring
them “to do more with less.” As a result, leaders
of the high–performing OPOs expressed a willingness to innovate
and take informed risks to improve organ donation performance.
Some OPOs and hospitals utilized innovation to break out of a
consent and conversion rate plateau, while others innovated to
staunch falling outcomes, initiate earlier referrals, and maximize
organ viability and yield through improved clinical donor management.
OPOs
have restructured staff.
- In 1996,
LifeGift implemented an in-house coordinator (IHC) program at
2 Level I trauma centers in Houston. LifeGift made this change
because it determined that working from within, rather than
from outside of, hospitals with high organ donor potential yields
more donations. Originally nurses, the IHCs were trained as
organ procurement coordinators and each was assigned to one
hospital. Their duties include all those activities that are
normally performed in the course of providing service to a donor
hospital, with the additional requirement that they are based
in the hospital. This on-site presence allows for daily interaction
with hospital staff, higher visibility, earlier potential donor
identification, and earlier opportunities to establish relationships
with potential donor families. Since its introduction at the
2 Level 1 trauma centers, LifeGift Organ Donation Center achieved
higher consent rates (48 percent pre-IHC vs. 68 percent post-IHC),
increased referrals (257 pre-IHC vs. 408 post-IHC), and increased
organ donors (56 pre-IHC vs. 79 post-IHC).
- Recognizing
the importance of meeting needs of potential donor families,
Donor Alliance of Denver attributes some of its recent successes
to the family support coordinator role, introduced in 2000.
Four trained staff members facilitate the consent process by
focusing solely on the family, while the functions of clinical
donor management, organ placement, and organ procurement are
assigned to separate job categories. OPO leadership instituted
this new model, based on the one in place at South Carolina
Organ Procurement Organization (SCOPA). In order to “break
the old culture of doing things,” Denver leadership sent
staff out-of-state to SCOPA for training as family support coordinators.
MTS also has staff devoted exclusively to family support.
- Several
OPOs (in coordination with hospitals in some instances) have
implemented or are planning innovative applications of information
technology to facilitate early referrals or improve other aspects
of organ donation.
- LifeLink
of Florida developed an automated calling system to expedite
the referral process. MTS and UWHC OPO have an automated calling
service, as well. LifeLink reported the following advantages
and impact on performance.
- Now
that referrals are logged into the computer system, there
is better maintenance of information that would otherwise
be lost or less accessible in paperwork;
- The
user-friendly system guides the operator and enables easier,
more efficient use of the calling system;
- Decreased
risk of inefficient, protracted referrals;
- Shortened
response time because vascular coordinators are involved
earlier in the process. The call center has prompts to call
the vascular coordinator on call within 5 minutes; otherwise,
the referral is shifted to the next vascular coordinator
on the call list.
- NEOB is
developing an intranet that will enable staff to write reports
in the field, making information more accessible to both OPO
and hospital staff.
- MTS is
working with the information systems department of one of its
hospitals to see if it can make better use of hospital data
for organ donation purposes. It is exploring whether it can
retrieve electronic profiles on potential donors from the hospital
data base in close to real time.
- LifeGift
is seeking to increase the utility of its 24-hour call center
by exploring the possibility of having the call center facilitate
organ placement in addition to referrals.
OPOs
and transplant centers seek to remain apprised of new interventions
to increase organ donor recovery and outcomes through participation
in professional consortia and clinical research.
- NEOB is
involved in several regional organ consortia, made up of representatives
from transplant programs in the New England region, that develop
uniform protocols, discuss the science of innovative organ recovery,
and act as a forum for the discussion of organ donation, procurement
and best practices in transplantation.
- UWHC OPO
is actively involved in research in machine preservation, UW
(Belzer) solution, multi-organ recovery techniques, and immunosuppression
to optimize organ recovery. It also introduced anesthesiologists
at some of their hospitals to T4 (thyroxine) treatment to increase
organ viability.
Some
OPOs and hospitals are more aggressive in donor management and
pursuing more marginal donor cases, and the majority of OPOs are
pursuing donation after cardiac death cases in their affiliated
hospitals.
- UWHC OPO
reported that it accepts more marginal (extended criteria) donors
than other OPOs. It also attempts to recover from every possible
donor even if the donor is unstable.
- MTS increased
the age threshold for kidney donors and accepts kidneys from
older donors.
- All but
one of the OPOs visited developed donation after cardiac death
protocols and shepherded them through many of their regional
hospitals and their respective care units.
Best
Practice 3: Strive to recruit and retain highly motivated and
skilled staff.
All
of the OPOs and some of the hospital managers attribute much of
their high performance to highly motivated and skilled staff with
tenure in the organization. OPOs seek to hire and retain staff
that are, or can become, passionate about organ donation, who
build and maintain expertise in their areas of responsibility,
and are willing to extend beyond routine levels of effort to achieve
goals. Hospital managers reported that long-standing nurses in
intensive care units serve as mentors on organ donation to nursing
peers.
Leaders and
managers within OPOs noted that staff continuity is one of an
OPO’s greatest assets. Highly competent and experienced
staff are more likely to sustain the requisite network of relationships
for successful organ donation. Organ procurement staff have, historically,
experienced high turnover rates, given the long and unpredictable
hours and often physically and emotionally draining nature of
the work. In many OPOs, individual staff have had a range of responsibilities,
contributing to the hours and stress of the job. OPOs must expend
resources and effort recruiting and retaining staff in a tight
labor market, particularly for nurses, that offers less stressful
positions, more predictable hours, and comparable or better pay.
OPOs described the various approaches they are taking to ensure
staff satisfaction and retention.
OPOs
use various practices to identify and recruit staff.
Depending on the position, these OPOs recruit from a variety of
sectors in and beyond health care, spanning medical care, emergency
medicine, mental health, the military, pharmaceutical industry,
public relations, and marketing, and put selected candidates through
a process of rigorous interviews.
- NEOB managers
receive training in and apply an “experiential approach”
to hiring. OPO leadership and frontline staff conduct one-on-one
interviews with candidates, during which they pose a typical
OPO situation (involving, e.g., a highly stressful case involving
the need to manage a complex process or influence a decision
without being in a position of authority), and ask how candidates
have handled similar situations in their past. Managers reported
that this technique reveals the extent to which candidates have
the necessary practical experience and style to be successful.
- LifeLink
looks for candidates who are aggressive, socially aware and
sensitive, collaborative, assertive, and work well in stressful
environments. LifeLink has a lengthy “reality” interview
process that involves meeting with 2 of LifeLink’s frontline
staff, experiencing an actual referral/donation event, and then
bringing the candidate back to interview with the executive
OPO staff. LifeLink found that it must interview approximately
5 candidates to hire one, and that only one of 3 hires stays
longer than one year.
In some instances,
OPOs have recruited through their ongoing working relationships.
A few OPOs reported having hired staff who had worked as nurses
at an area hospital and become familiar with the OPO and organ
donation prior to inquiring about a position with the OPO.
Staff
need adequate orientation and training. Most of these
OPOs provide new hires with extensive orientation, including general
sessions and those tailored to specific roles. OPOs noted that,
depending on the position, it takes staff between 6 months and
2 years to reach proficiency. OPOs support highly motivated staff
by offering continuous training opportunities. Staff reported
that exposure to regular training helps them develop and hone
their skills, and increases job satisfaction.
- NEOB developed
an extensive orientation program with corresponding checklists
to document coverage of certain content. New staff receive training
on organizational roles and responsibilities, administrative
services, and human resource policies. New hires participate
in a training curriculum tailored specifically to their respective
roles as donation coordinator, family support counselor, or
hospital development coordinator. NEOB also requires that staff
participate in a quality assurance orientation.
- MTS provides
its new hires with a comprehensive 9 month orientation and ongoing
staff training thereafter. Orientation includes training on
MTS’ various roles in the organ donation process, MTS
hospital development structure and services, and the continuous
quality improvement process at MTS. MTS immerses new staff members
in the organ donation process immediately. For example, new
family support staff are called onto every referral during their
first 9 months so that they can gain as much exposure to the
consent process as possible and learn techniques from different
staff members.
- Donor Alliance
guides its new hires through an orientation process that includes
the observation of many of the events in the organ donation
process. For instance, hospital development orientees are required
to participate in several tours of relevant sites (transplant
centers, regional STATLINE offices) and to observe the referral,
approach/ consent, and donor management phases.
- LifeLink
found it takes 3 to 6 months of training before a vascular coordinator
is ready to act without assistance. Until then, new vascular
coordinators accompany experienced ones on every referral call.
OPOs
create a professional culture that encourages both collaboration
and autonomy. OPO leaders foster collaboration and teamwork,
but also give their highly qualified staff opportunities to make
independent decisions. Collaboration occurs formally, with supervisors
or in team meetings, or informally. Leaders and managers provide
direction and encouragement, solicit staff feedback, and solve
problems jointly with staff. OPO staff report that managers’
trust in their ability to make autonomous decisions toward achieving
organizational goals contributes to job satisfaction.
- NEOB provides
staff “room to do their job” by vesting staff with
decision-making authority within their respective roles in the
organ donation process.
- LifeGift
provides its staff with decision-making authority on organ donation
matters. For example, a regional director at LifeGift noted
that OPO leadership encourages staff “…to find out
what works best for our region.”
- Though
staff have different roles, UWHC OPO staff work as a team and
are held accountable for their results as a team. To contribute
to teamwork and camaraderie, UWHC OPO holds social functions
outside of the work, and staff members report meeting socially
on their own.
Staff
members value, and report performing better in, flexible work
environments, and appreciate other benefits.
OPOs report
providing staff with flexible work environments and other incentives
to ensure employee satisfaction. Examples include the following.
- Several
OPOs, including MTS, allow their on-call clinical coordinators
to be on call from home. MTS implemented this policy in response
to requests from clinical staff. MTS clinical staff are required
to come into the office only on the days of their standing weekly
meetings. In addition, staff make themselves available to cover
for their colleagues in the event that one of them needs additional
time to recover from a particularly stressful case the night
before.
- Besides
their employee assistance programs, a few OPOs reported making
available certain other forms of support as needed. NEOB gives
staff the opportunity to meet with a psychologist once a month
individually or in a group, at no cost to staff. LifeGift’s
in-house coordinators started their own optional support group
during which they can discuss issues that are directly or indirectly
related to their jobs. The OPO provides food for these meetings.
- LifeLink
has hired a company to benchmark its salaries against the market
for similarly qualified staff. LifeLink reports that it pays
100 percent of staff health insurance premiums, and provides
a competitive pension plan.
- As noted
above, several OPOs, including MTS, LifeLink, LifeGift, and
Donor Alliance, provide financial incentives for meeting individual
and organizational targets.
Given the
physical and emotional stress that can attend organ donation,
hospital management also noted the importance of providing nurses
who participate in organ donation cases with some relief in their
work schedules. For example, one of LifeLink’s hospitals
allowed nurses the time to follow their organ donation cases through
procurement. To make this possible, unit managers shuffled shifts
and fellow staff nurses assumed more responsibilities on the unit.
This relief provided nurses with closure at a time of loss and
increased the likelihood of their participating in donor cases
in the future. This provision also was noted at one of UWHC OPO’s
hospitals.
OPOs
provide staff with continued opportunities for professional growth
and development in an effort to attract and retain qualified staff
and minimize turnover. OPOs indicate that the people
they tend to hire seek to learn more, improve their qualifications,
and increase their opportunities for advancement.
- MTS employees
are encouraged to publish their research and give presentations
at area hospitals.
- NEOB provides
a variety of opportunities and outlets for its staff to conduct
research studies, write and publish research papers, and take
relevant classes at local universities.
- MTS provided
training for its clinical staff in continuing the donor management
process into the operating room therefore negating the need
for the anesthesiologist during organ recovery. Clinical staff
expressed gratitude for the new challenge and professional development
opportunity.
- At Donor
Alliance, family support coordinators received training in the
determination of medical suitability. This training provides
the coordinators with the ability to assess brain death status,
review medical and social histories, and be more responsive
to questions from family members.
Best
Practice 4: Appoint members to OPO board who can help achieve
organ donation goals.
In
all OPO sites, OPO boards or advisory structures were designed
to advance the interests of the OPO. Common themes among the boards
included a professionally diverse composition and equal representation
of organ donation and transplantation interests. Some OPOs use
their governing boards strategically to gain hospital and community
buy-in to organ donation as, in the words of one OPO leader, a
“sacred public trust.”
Some OPO governing
boards are comprised to promote collaboration and mitigate conflicts
of interest.
- Both NEOB
and LifeGift serve a large number of transplant centers and
have representatives from each center on their board, in compliance
with Federal regulations. Both OPOs chose to maintain fairly
large boards that are not dominated by transplant centers, which
they report to be highly competitive. As such, these OPO boards
include a complement of members from large non-transplant hospitals.
Some OPO leaders remarked that having a wider representation
on their boards broadens input and tends to balance potential
biases.
- MTS strategically
appoints top officials from high donor potential hospitals to
its board. With this greater interest in the welfare of the
OPO, these individuals are more likely to make organ donation
an institutional priority, and to respond and take more informed
action when barriers to organ donation arise at their hospitals.
The board also has a mixture of neurosurgeons, intensivists,
a medical examiner, and community representation (including
a donor family representative, attorney, and bank executive).
Citing the value of continuity, this OPO sets no term limits
for its board members.
- Donor Alliance
reported that when it replaced its transplant surgeon medical
director with a non-transplant surgeon 3 years ago, it broadened
board perspectives of OPO operations.
- Community
members are recruited to sit on LifeLink’s board. Among
its board members is the editor of a leading local newspaper,
representatives from such companies as a major bank, a major
department store, and a local professional athlete. LifeLink
reports that this distribution of board members promotes collaboration,
increases community support, and mitigates conflict of interest.
Effective
boards organize to reflect their corporate structures and achieve
their organizational missions. LifeLink has 3 governing boards,
one each for its Foundation, Transplant Institute (a 501(c)(3)
subsidiary of the Foundation’s board that focuses primarily
on the management of physicians and patient care), and Legacy
Fund, which is charged with fundraising for LifeLink. The LifeLink
Foundation has 4 OPOs under its management, each with an advisory
board that reports to the Foundation’s board. LifeLink makes
it clear that it expects board members to be committed to promoting
donation in the community. It involves board members in community
events and engages them with organ donor families and recipients.
LifeLink reports that its board structure (with the Foundation’s
board as the primary oversight body) improves its organ donation
performance, because it helps to provide LifeLink with community
buy-in, resources, and the infrastructure necessary to achieve
its goals in multiple regions.
Best
Practice 5: Specialize roles to maximize performance.
Alternate
staffing models were observed among the 6 OPOs visited. Most of
the OPOs adopted a specialized staffing model in which certain
personnel are responsible for specific aspects of the organ donation
process. One of the OPOs in the sample implemented a general staffing
model; LifeGift supports an in-house coordinator model in which
one person, a nurse, is responsible for practically all aspects
of organ donation and consent. Both approaches were perceived
by respondents in the sites where they were implemented as contributors
to higher than average performance. The former reportedly reduces
staff burnout and turnover, allowing staff to deepen their expertise
in one or 2 areas of organ donation. The latter appears to promote
the earliest possible referrals from the hospital to the OPO because
coordinators are on the hospital premises. In addition, in-house
coordinators are resources to hospital staff and potential donor
families, even prior to brain death.
While this
best practice addresses OPO staff specialization as a contributor
to high performance, it is not meant to discount the general staffing
model that is effective. Role specialization exists in hospitals.
Physicians, nurses, and, often, social workers and chaplains make
up a multidisciplinary patient care team, each playing a role
in the organ donation process. For example, the family support
role is often assumed by social workers, chaplains, or staff nurses
prior to brain death declaration.
The majority
of OPOs visited attributed part of their higher performance to
their specialized OPO staffing models. These staffing models were
prompted, in large measure, by the need to reduce staff burnout
and turnover. These OPOs moved away from the traditional model
of having organ procurement coordinators being responsible for
all events in the organ donation process (e.g., response to hospital
referrals, family consents, clinical management of donors, recovery
and placement of organs) to a model in which designated experts
assumed specific roles in the process.
Most OPOs
delineated the necessary roles in 3 categories, i.e., persons
responsible for: supporting families through the organ donation
process, including asking families for consent; developing and
maintaining relationships with hospital staff, including identifying
champions for organ donation and educating hospital staff; and
clinical aspects of organ donation, e.g., donor management, organ
recovery, and organ placement. Each category of personnel requires
a certain mix of skills. OPO managers expressed largely consistent
opinions regarding optimal skills for the various roles, as follows.
1. Clinical
coordinator: clinical/technical experience in critical
care or trauma settings; experience managing complicated, high
stress events; ability to be flexible and work with people. Effective
clinical coordinators often come from backgrounds as critical
care nurses, emergency medical technicians, physician assistants,
and medics.
2. Family
support: therapy or counseling experience, highly empathetic
and compassionate, ability to connect with people of different
backgrounds. Effective family support staff often come from backgrounds
in social work, social service, advocacy, mental health or counseling,
and pastoral care.
3. Hospital
relations: experience in business development or marketing,
account management/development experience, sales expertise. Effective
hospital relations staff have come from diverse backgrounds, including
public relations, pharmaceutical sales, nursing, social work,
biological sciences, and other positions in organ procurement.
OPOs reported
that role specialization affects organ donation processes in several
ways. Job satisfaction and tenure with the OPO increased as staff
have more time to specialize and increase proficiency. Two OPO
managers noted that the involvement of more highly specialized
staff encourages hospital staff to turn to the OPO for expertise
in organ donation situations. Several hospital staff confirmed
that they trust expert OPO staff to assist them in the care of
donors and donor families. Hospital staff expressed that they
value working with familiar, experienced OPO staff, as it improves
communication between hospital and OPO staff and supports improved
organ donation performance. As noted by one OPO manager, role
specialization, particularly for family support staff, benefits
donors and their families most. Although combining these roles
in a single staff position can be successful, separating the clinical
care coordinator role from that of the family support role enables
both to be devoted to what can be highly demanding tasks. Further,
it enables people with appropriate backgrounds (e.g., clinical
care and social work, respectively) to adapt and apply these appropriately.
OPOs
and hospitals assign staff to specific roles according to professional
strengths.
- Many of
the OPOs reported having “designated requestors”
at their hospitals. OPOs provided specialized designated requestor
training to physicians, nurses, social workers, and pastoral
care staff in their hospitals to increase their ability to make
compassionate and effective organ and tissue requests. In St.
Louis, pastoral care staff are the designated requestors for
tissue. The hospital staff in UWHC OPO’s service area
are the designated requestors for both organs and tissue.
- MTS divided
its employees into 3 categories: clinical staff, family support
staff, and hospital development staff. While hospital development
staff had specific assignments, family support and clinical
staff were on call. MTS established further specialized roles
for more complex donor cases, such as child donors. MTS sends
2 clinical coordinators instead of one to the hospitals to expedite
the organ procurement and placement process; one coordinator
manages donors and organ recovery while the other is responsible
for placement.
- LifeLink’s
“Liaison Program” created 2 roles: the vascular
coordinator (analogous to the clinical coordinator and family
support roles) and hospital development role. LifeLink had determined
that assigning both functions to individual staff persons resulted
in their working excessive hours over extended time periods
(i.e., before, during, and after donation) and increasing staff
burnout. According to LifeLink, the clinical role specialization
resulted in improved screening for medical suitability, increased
consents, and better clinical management. Upon this staffing
change, vascular donors increased from 63 to 96 and bone donors
increased from 107 to 138 between 1989 to 1992. Creating the
hospital development role resulted in more interactions with
hospitals and was associated with a 100 percent improvement
in referrals during the same period.
- NEOB assigns
a team consisting of a hospital development coordinator, family
support counselor, and donation coordinator to each of its high
and mid-potential hospitals. This approach allowed each staff
person to develop an understanding of hospital dynamics; in
addition, staff performance benefited from the team interaction.
Staff reported that the team approach provided better coordination
across the events in the organ donation process, ongoing support
to donor families that freed hospital staff to manage the donor
and/or see other patients, and facilitated hospital relationship-building.
The specialized
staffing model is often not fully implemented in outlying areas.
Most OPOs assign a hospital development person to hospitals in
outlying areas and provide on-call clinical coordinators who may
also assume the family support role.
Best
Practice 6: Tailor or adapt the organ donation process to complementary
strengths of OPO and individual hospitals.
The
high performing OPOs visited tailor the organ donation process
to the complementary strengths of OPOs and individual hospitals.
Implicit in this practice is that a “one size fits all”
approach is not necessary. Instead, OPOs work with hospitals,
leveraging existing hospital resources and capacities to complement
OPO strengths to create an integrated approach to organ donation.
The particular tailored approach notwithstanding, all are subject
to high performance standards, ongoing monitoring, and adaptation
to achieve and exceed these standards. Several ways in which OPOs
and hospitals have tailored the organ donation process to their
complementary strengths are as follows.
OPOs
and hospitals develop and adapt their organ donation process by
assessing staffing in the context of the roles or functions required
for high performance. The organ donation process requires
that specific roles, e.g., family support and clinical management
of the donor, be carried out effectively. Whether these roles
are assumed by OPO staff or hospital staff is less important than
whether they are conducted in a manner that optimizes organ procurement
in a particular hospital environment. Through the development
of their hospital plans and other means, OPOs work with hospital
staff to assess how critical care is delivered at each hospital
and determine who is best qualified to assume the necessary, complementary
roles in the organ donation process. OPOs target their training
and education sessions according to hospital staffing models,
as well. Examples include the following.
- In many
hospitals, the social work department is an essential component
of the critical care team. Hospital nurses often page social
workers to assist with family care for every trauma case. Recognizing
the important role social workers play in the care for the potential
donor patient and family, OPOs educate social workers to serve
as a referral source of potential donors, if appropriate. Even
though some of these OPOs have their own family support staff,
the OPO does not assume or usurp the social workers’ role
of supporting the family. Instead, OPO staff work with social
work and hospital staff to bolster family support.
- UWHC OPO
tailors its referral and consent process to capitalize on the
strengths of hospital staff. The hospital staff in UWHC OPO’s
service area have considerable experience making referrals and
obtaining consents from families at consistently high levels.
Recognizing this, UWHC OPO does not take the lead in obtaining
consent, which is done by nurses and physicians, but serves
to support the medical staff during the organ donation and recovery
process. The OPO also provides hospital staff with continuing
education sessions on requesting and related aspects of organ
donation. This approach supports, rather than replaces, the
longstanding institutional and professional commitment to organ
donation in the UWHC system, and the extensive experience of
requesting nurses and physicians with organ donation.
OPOs
use plans and data collection to facilitate the tailored approach.
OPOs develop hospital plans and profiles to document individual
hospital characteristics and tailor hospital development approaches
accordingly.
- As required
of other OPOs, NEOB develops hospital plans annually for each
hospital in its service area. This OPO establishes clear objectives
for staff to achieve at each hospital, implements actions pursuant
to established objectives, and tracks hospital performance relative
to objectives. OPO staff also conduct a strengths, weaknesses,
opportunities, and threats (SWOT) analysis of organ donation
within its hospitals. Strengths may include organ donation experience
of the neuro-intensive care unit (NICU), surgical intensive
care unit (SICU), and pediatric intensive care unit (PICU);
presence of a routine referral mechanism; strong support from
nurse managers; and existing relationships with several committees.
Weaknesses may include having less organ donation experience
in other hospital units that see fewer potential donors, such
as the medical intensive care unit (MICU) and critical care
unit (CCU) staff. OPO staff modify their actions according to
this analysis.
- LifeLink
identifies hospital needs by developing a hospital profile for
every hospital in its service area. The profile characterizes
each hospital’s system, including the nature of relationships
with the medical examiner, EMS staff, and other key agents.
The profile lists the recommended names of hospital staff with
whom the OPO should work, which serves as a useful resource
to new staff in the event of turnover. Staff use and update
the profiles in real-time.
Part
of the tailored approach is to minimize any burden that the organ
donation process places on hospitals. OPOs and hospitals
express the importance of minimizing the burden that organ donation
can place on hospitals. Hospital staff are more receptive to making
referrals and participating in the process when it is apparent
that the OPO consistently seeks to accommodate hospitals.
- Several
high potential hospitals affiliated with OPOs in the sample
reported that organ donation had increased the burden on already
busy operating room (OR) staff and space. OPOs took action in
different ways. MTS built 2 OPO-site ORs that relieved hospital
resources. Other OPOs contracted with independent anesthesiologists
and surgeons to assist hospital staff with the procurement of
organs, and developed independent contractor relationships with
hospital OR nurses to be on call for organ procurement during
off-hours.
- Recognizing
that donor management is a resource-intensive process, several
hospitals noted that the OPO donor management protocols minimize
the burden placed on their nursing staff. OPO clinical coordinators
direct all aspects of donor management with clear clinical orders
and processes. Physician staff affiliated with NEOB remarked
that nurses appear to be more willing to participate in donor
management cases knowing that the OPO directs the care of the
donor, enabling nurses to follow orders. Medical staff perceive
OPO staff as being a net benefit to their work. In addition,
some nurses emphasized that having qualified NEOB family support
staff on-site enabled them to serve other patients and their
families.
- OPO staff
endeavor to schedule education, training, and debriefing sessions
at times and places that are most convenient for hospital staff.
OPO staff routinely schedule these sessions at times “when
staff will be hungry,” early in the morning or over lunch
breaks, and bring more than enough food to serve all attendees.
Donor case debriefing sessions are most effective if scheduled
soon after the event. OPO managers typically try to schedule
these post-donation debriefings on the critical care units to
minimize disruption of patient care responsibilities.
- UWHC OPO’s
rapid recovery model involves the immediate mobilization of
the surgical recovery team to recover organs as quickly as possible,
thereby minimizing the burden on hospitals.
- MTS hospital
development staff and hospital staff at several affiliated hospitals
have implemented a system that both streamlines the death record
review process and reduces the burden on hospital staff to pull
charts. In this system, hospital staff allow MTS staff to access
records on a daily basis before they are filed.
Best
Practice 7: Be there: integrate OPO staff into the fabric of high
potential hospitals.
All
of the OPOs and hospitals emphasized the importance of integrating
OPO staff into the institutional fabric of high potential hospitals.
As hospital staff become more familiar with OPO staff, they become
more cognizant of the organ donation process. Among the benefits
of this practice include strengthening and revitalizing the network
of relationships upon which organ donation depends, raising awareness
of organ donation within the hospital institution, increasing
the likelihood of earlier referrals to the OPO, and facilitating
real-time problem solving. OPO staff become enmeshed in the fabric
of high potential hospitals in such ways as the following.
OPOs
dedicate a position or part of a position to hospital development.
All of the OPOs visited had departments and staff dedicated to
hospital development activities. Their function is to develop
and sustain relationships with hospital administration and staff
to advance organ donation. Most often, hospital development personnel
were assigned to specific hospitals and worked independently or
as part of a team of OPO staff. At LifeGift, hospital development
responsibilities were assumed by the in-house coordinator. While
hospital development responsibilities are shared among all of
its staff, UWHC OPO hired one staff position dedicated to hospital
development and is looking to hire an additional hospital development
staff person to implement a more formal hospital development program.
One OPO shared
the impact of instituting a formal hospital development program.
LifeLink initiated a liaison program in 1989, creating the hospital
development liaison position to focus solely on building relationships
in hospitals. As noted above, LifeLink recruits hospital development
coordinators from either public relations or marketing backgrounds.
LifeLink reports that, during the period 1989 to 1992, the number
of visits with hospitals rose from 571 to 3,238 and the number
of referrals increased from 379 to 2,154.
Accept
OPO staff in hospitals and on intensive care units. In
order for OPO staff to work productively in hospital settings,
it is essential that they be welcomed and accommodated by hospital
staff, as described in the following examples. (Strategies associated
with Best Practice 9: All aboard: secure and maintain buy-in,
include examples of how OPOs secured hospital buy-in.)
- In Houston,
2 hospitals accommodate LifeGift’s in-house coordinators.
Hospital administrators ensure that IHCs have office space and
hospital identification badges. On the units, hospital staff
willingly give the IHC desk space, phones, and private rooms
for family approaches.
- Three
Boston hospitals offered NEOB staff office space. One of these
hospitals provides office space in its transplant center, while
another provides office space in the SICU.
- One hospital
in MTS’ service area and all NEOB affiliated hospitals
in the sample provide OPO staff with hospital badges.
- Hospitals
make their medical records available to OPOs to perform death
record reviews.
- Several
hospitals invite OPO staff to standing meetings to deliver organ
donation education and share data on performance.
OPOs stressed
that, while it is important to be integrated into the fabric of
the hospital organization, it is still necessary to recognize
and respect that OPO staff are guests in hospitals. OPO staff
are made aware of the importance of not over-stepping their boundaries
as they team with hospital staff in organ donation.
Hospitals
remarked that the high visibility and continuity of OPO staff
contributed to their organ donation performance. OPOs
made a concerted effort to maintain high visibility in hospitals.
Some hospital staff reported that OPO staff are so familiar that
they are frequently mistaken for hospital staff. Among the means
cited for increasing the presence of OPO staff in hospitals are
securing office space in hospitals, conducting regular rounds
in high potential intensive care units, and participating in standing
hospital meetings. Hospital staff remarked that, “They are
here all of the time.” and “It’s abnormal when
they are not on the scene.” OPOs add further to their presence
and organ donation awareness through their services, including
conducting education and training sessions, providing educational
materials, and conducting and participating in social functions
and public awareness events. Specific examples of OPO visibility
in hospitals and its effect on performance include the following.
- All 6 OPOs
and hospital respondents described the value of making regular
rounds. One NEOB hospital development coordinator noted that
making rounds to high potential units heightens organ donation
awareness among hospital staff and increases staff compliance
with organ donation protocols. When nurses see her, “they
will automatically look at the white board to see if any patients
look like potential organ donors.”
- By design,
LifeGift’s in-house coordinators are highly visible within
hospitals. They are the most likely OPO personnel to identify
potential donor cases early; they raise hospital staff awareness
of patients who appear to be progressing toward brain death
and may qualify as donors.
- MTS distributes
pens, notepads, and mugs with the MTS hotline number on them.
These aids are intended to support the MTS presence in the hospital
and serve as reminders for staff to contact the OPO when the
OPO staff are not present in the hospital.
- LifeLink’s
visibility in hospitals is enhanced by its coupling of organ
donation with the more frequent eye donation process (such as
through use of a shared call-in number). Likewise, Donor Alliance
of Denver reported that it uses its close relationship with
the Rocky Mountain Eye Bank to keep organ donation at the forefront
of the minds of hospital staff.
- At one
Denver hospital, a Donor Alliance donation consultant maintains
and updates a donation “fact of the week” posted
on the trauma services department office door. For instance,
during the site visit, the message was about the current enrollment
in the Colorado Donor Registry.
Staff continuity
also contributes to being part of the hospital fabric. Hospital
leadership and staff remarked how easy it is to communicate and
work with the OPO staff whom they have known for years. Trust
and a professional, sometimes personal, rapport develop between
OPO and hospital staff. Staff of one Boston hospital noted that
the OPO presence in the hospital is a routine and welcome occurrence,
and notice when their OPO liaison is not around.
When turnover
occurs, OPOs work hard to enact a smooth transition, so that relationships
with hospitals are not jeopardized. For instance, NEOB assigns
a team of 3 people to their high potential hospitals not only
to ensure adequate coverage but to serve as a hedge against turnover.
When OPO staff turnover does occur, the departing team member
introduces the new team member to the hospital staff to demonstrate
continuity and communicate their verification of the new OPO staff.
OPO
staff seek to maximize their availability and accessibility at
all times to hospital staff. OPO staff use cell phones,
pagers, and beepers to maintain real-time communication with hospital
staff. Having office space at hospitals also facilitates a quick
response time for hospital staff. Real-time access to OPO staff
increases hospital and OPO staff ability to troubleshoot or break
down any barriers to donation, thereby increasing organ donation
performance, developing trust that OPO staff will respond to any
hospital calls, facilitating future referrals to OPOs, and demonstrating
OPO dedication and accountability to hospital staff.
Best
Practice 8: Identify and support organ donation champions at various
hospital levels; include leaders who are willing to be called
upon to overcome barriers to organ donation in real time.
Hospitals
and OPO staff interviewed almost universally stressed the importance
of having organ donation champions at hospitals. The organ donation
champion serves as an advocate, a liaison between the OPO and
hospital, and a facilitator of the organ donation process in the
hospital. Organ donation champions can range from executive to
unit-level medical or administrative staff; many hospitals had
champions at different levels of staff and departments. Typically,
these champions are leaders at their respective levels or units,
including hospital managers or chiefs of surgery known throughout
their institutions or charge nurses within particular units.
OPO staff,
primarily hospital development personnel, identify and support
organ donation champions on an ongoing basis. Some champions come
into hospitals with a pro-donation stance, having had a personal
experience with donation or having always considered donation
to be a part of their job. OPO staff formalize and maintain relationships
between these individuals. OPO staff cultivate relationships with
other champions who may have less experience with the process
but come to see organ donation as part of fulfilling the hospital’s
mission. Some of the characteristics attributed to champions include:
respect among peers, commitment to organ donation, source of leadership,
decision-making authority within the institution or a unit, and
availability and willingness to resolve barriers to organ donation,
especially in real-time. Organ donation champions arise or are
designated in various ways, such as the following.
OPOs
can invite hospital personnel who are champions to serve on the
OPO board. A few OPO leaders strategically select influential,
potentially pro-donation hospital personnel to serve on their
boards. While these OPO leaders do not necessarily expect a lot
of time from board members, they do expect them to be champions
for organ donation and accessible to the OPO for immediate as
well as longer-term needs for facilitating organ donation. OPO
leaders note that they are careful not to abuse access to board
members. MTS has a board retreat every 2 years that is used to
get members “hooked” onto the OPO’s mission
and commit to helping the OPO solve problems. This 2-to-3 day
event is held out of town and is open to spouses. The retreat
gives the board a chance to bond and offers learning opportunities.
OPOs
and other influential leaders can target hospital executives or
chiefs of staff as potential champions. OPO leadership
or hospital development personnel as well as health care leaders
outside of the OPO have played a role in identifying executive-level
champions for organ donation within hospitals. While high-level
executives may delegate responsibilities, their participation
demonstrates to staff an institutional commitment to make organ
donation a priority. Some OPO leaders noted that it may be difficult
to start at the top in larger, high profile hospital institutions
where senior executives are difficult to access. Others preferred
high-level physician champions for their credibility among clinical
staff.
- In Boston,
former Public Health Commissioner Howard Koh met with all of
the CEOs of transplant centers in Massachusetts and NEOB in
2000 to promote organ donation as a public health initiative.
Commissioner Koh invited each CEO to make organ donation a priority,
designate a high-level liaison between NEOB and their institution
to facilitate organ donation, and participate in periodic meetings
to review each hospital’s organ donation outcomes. All
of the hospitals in the sample were participants in the “Koh
initiative,” which had the following reported effects.
- CEOs
of all of the hospitals designated high-level champions,
e.g., a chief medical officer, vice president, or associate
chief nurse, to which NEOB had direct access.
- One
hospital that considered itself pro-donation before the
initiative saw an increase in its referral rates in units
with lower donor potential.
- Several
hospitals increased monitoring of organ donation performance.
- In
2 hospitals, high-level champions were able to elevate organ
donation to emergency status, permitting access to additional
staff resources when needed.
- High-level
champions at 2 hospitals were instrumental in overcoming
barriers to approving the donation after cardiac death policy.
- LifeLink
developed a relationship with the senior vice president (VP)
of patient care services at one of its hospitals. LifeLink noted
that the senior VP holds staff accountable for organ donation
performance by requesting regular data reports. LifeLink meets
with the high-level champion on a regular basis to review and
discuss any problems. The champion troubleshoots and facilitates
the organ donation process by contacting the managers of the
units that tend to miss potential referrals to discuss how to
improve performance.
- Leadership
at several hospitals considers organ donation as one of the
many inviolable rights accorded to patients. This message was
emphasized in interviews with a nurse administrator who is willing
to bring this to the direct attention of staff who may be interfering
with the process.
OPOs
identify organ donation champions through the relationships they
develop with referring physicians and nurses. OPOs identified
and engaged unit-level physicians, surgeons, intensivists, nurse
managers, staff nurses, social workers, and chaplains to promote
and facilitate the organ donation process.
- MTS identifies
high-level physicians, especially trauma surgeons and critical
care and neurology intensivists, to be organ donation champions.
By engaging these high-level physicians, MTS seeks to influence
mid-level physicians/residents, resulting in higher referrals
and potential donors. As one MTS manager stated, “If you
secure doctors of high stature, it will facilitate mid-level
doctor support.”
- LifeGift’s
in-house coordinator in one of Houston’s higher potential
hospitals identifies staff nurse champions of organ donation.
LifeGift cultivates relationships with these nurses, intending
to create a trickle-down effect among nursing staff in that
more senior nurses teach student nurses about organ donation
referral and guidelines. Nurses learn to call the OPO for a
potential referral, considering this as “just another
consult.” At another hospital, LifeGift staff seek to
identify potential champions as a part of meeting with all new
hospital staff and conducting one-on-one education.
- Six years
ago, Donor Alliance invited a staff nurse from one of its hospital’s
surgical intensive care units (who had a personal experience
with organ donation) to join its board. Well before her board
appointment, she had been instrumental in “creating a
milieu where donation is honored and supported” within
the hospital. Asserting that organ donation begins in the field,
she was instrumental in arranging for the EMS personnel to observe
an organ procurement in the OR to raise their awareness of organ
donation.
- At one
hospital within the Donor Alliance service area, a donor resource
team (chaired until recently by the current director of cardiac/critical
care service and a former Donor Alliance board member) champions
organ donation. In collaboration with a Donor Alliance donation
consultant, this team meets regularly to review data, air disputes,
and design hospital-wide policies. Members of this team reported
that they serve as a “committee of ears,” providing
continuity and reducing fragmentation in the hospital.
Identifying
and supporting organ donation champions at various hospital levels
and engaging them to strengthen the organ donation process and
overcome real-time barriers improves organ donation performance.
As recommended by a hospital executive, peer-to-peer communication
is as a potential strategy for identifying and supporting organ
donation champions in hospitals.
Best
Practice 9: All aboard: secure and maintain buy-in at all levels
of hospital staff and across departments/functions that affect
organ donation.
OPO
and hospital personnel do not rely on champions alone to achieve
high levels of performance. Given the range of participants and
functions involved in organ donation, including many that can
serve as barriers as well as facilitators of the process, it is
necessary to secure and maintain buy-in at all levels of relevant
hospital staff and across all relevant hospital departments. Buy-in,
i.e., an identification with and commitment to organ donation,
supports the integration of organ donation into routine patterns
of care. It can be promulgated from the top down as well as across
hospital units and departments.
Among the
diverse methods for supporting buy-in are the following.
OPOs
make their resources known to hospitals. Hospital buy-in
is strongly encouraged by offering needed services to hospitals.
Resources that OPOs can offer include providing education, awareness
events, requestor training, personnel, and technical assistance
for policy development and fulfilling regulatory requirements.
- Nurses
at hospitals affiliated with NEOB and MTS expressed appreciation
for the family support service offered by these OPOs. These
nurses noted that the most difficult aspect of organ donor cases
is supporting the family because it is emotionally stressful
and very time consuming. Aside from relieving them to care for
other patients, knowing that the OPO can provide support services
to the donor family actually facilitates the nurses’ awareness
and support of organ donation in their units.
- OPOs with
tissue programs seek out hospital staff to serve as tissue donation
requestors. In the hospitals visited, tissue requesting is conducted
by nurses, social workers, and chaplains. OPO staff provide
formal training and recertification sessions to designated tissue
requestors. While these individuals do not usually make requests
for organ donation, their training and accomplishments contribute
to an increased level of donation awareness within their hospitals.
- Several
hospitals, including high donor potential hospitals, remarked
that their OPO hospital development contact assists them with
writing their organ donation audit reports for the Joint Commission
on Accreditation of Healthcare Organizations (JCAHO).
- Sample
hospitals in Denver were able to use OPO data during recent
evaluations by the American College of Surgeons for accreditation
as a Level I Trauma hospital.
OPOs
invest in building the trust and respect of all hospital staff.
Many hospitals remarked that they welcome OPO staff, not only
because of the skill and services they bring to the process, but
because they are trustworthy and mindful of hospital staff responsibilities
and needs. Hospital staff observed that OPO staff are mutually
committed to the well-being of patients and their families regardless
of progression to brain death or the outcome of requests for consent;
bring expertise to the organ donation process; follow-through
when interacting with hospital staff; and try to solve problems
at the source before going to superiors.
- Several
hospitals emphasized that nurses trust and respect OPO staff
because they are not solely focused on “procuring organs”
but on supporting families to come an informed decision that
is right for them.
- In the
event of a problem, such as a missed referral, LifeLink staff
routinely discuss this first with the person responsible before
raising it with superiors. This provides staff with an opportunity
to explain any extraordinary circumstances that might have prevented
the referral and to work with OPO staff to remedy the situation
for the future. This approach fosters trust and mutual respect
between OPO and hospital staff.
- Staff of
one hospital affiliated with LifeLink noted that LifeLink staff
attend hospital trauma rounds and provide feedback about placement
of organs, and that this interaction helps to develop rapport
and trust. This contributes to the willingness of hospital staff
to identify and refer potential donors to LifeLink.
OPOs
and hospitals secure buy-in by reinforcing the donation message
among all levels of hospital staff via donation events, social
outings, and other activities.
- MTS invites
physicians, residents, and nurses involved in organ donation
at their affiliated hospitals to St. Louis Cardinals baseball
games, hockey games, annual dinners and other outings to maintain
buy-in, strengthen relationships, and recognize high performance.
Some of the events are entirely social in nature, while others
include formal presentations on aspects of organ donation or
new research.
- One hospital
in UWHC OPO’s service area hosts an annual donor picnic
that is attended by hundreds of individuals in the community.
This event, hosted by the hospital (though also attended by
OPO staff) raises community awareness and contributes to the
strong public buy-in of organ donation. In addition, hospitals
in UWHC OPO’s service area also hold annual dinners and
other events for donor families.
OPOs
consistently show appreciation to hospital staff for their efforts.
Shows of appreciation by OPOs range from providing food for staff
(done by all OPOs), to hosting dinners, to naming hospital staff
in newsletters and other notices about organ donation activity.
Once a year, MTS hospital development staff visit high-referring
ICUs with dinner and provide an update on organ donation performance.
To show its appreciation for a physician’s timely response
to a request to perform a key test during the middle of the night,
MTS sent the physician a box of his favorite cigars with a personal
note of thanks.
Some
OPOs and hospitals jointly celebrate successes and communicate
them internally or externally, fostering support for organ donation.
Some OPOs present organ donation successes in reports to hospitals
or via a formal plaque or certificate. OPOs and hospitals engage
local media to increase awareness within the community and within
hospitals of successful transplantations. While transplant centers
appeared to consistently promote their successes within the community,
some hospitals were more willing than others to disseminate their
organ donation successes outside of individual hospital units.
- OPO staff
provide plaques and other awards to individual hospital units
in a few hospitals affiliated with LifeLink and Donor Alliance.
These forms of recognition serve not only to recognize the unit’s
success and dedication to organ donation, but as another reminder
to refer potential donors.
- Several
high potential hospitals of many OPOs publish organ donation
stories in their hospital newsletters, highlighting recent organ
donation successes.
- UWHC OPO
decorates a “memorial” wall with names of donors
and recipients for public viewing.
- Local media
published a story of a successful organ transplantation that,
according to medical staff at an NEOB-affiliated hospital, promoted
organ donation within the hospital and throughout the greater
community.
Best
Practice 10: Educate constantly; tailor and accommodate education
to staff needs, requests, and constraints.
While
not the first thing that OPO staff mentioned as the reason for
their successful organ donation performance, most hospitals noted
the important role that repeated education plays in maintaining
or increasing organ donation consent and conversion rates. Among
its many benefits, education:
- Increases
familiarity of hospital staff with the organ donation process
and the benefits of organ donation. “Education gets and
keeps donation on staff radar screens;”
- Helps to
eliminate myths or misconceptions about organ and tissue donation
that may prevent staff from participating in a donor case;
- Informs
hospital staff of their important role in the organ donation
process, including consistently identifying and referring potential
donors to the OPO as soon as possible, communicating the potential
donor’s clinical status to families, and supporting donor
management and procurement;
- Lowers
barriers to the organ donation process;
- Assists
staff with compliance with Federal regulations that require
hospitals to report all deaths to the OPO, ensure that only
trained requestors approach families, and provide OPOs with
access to conduct death record reviews. (In the case of the
3 OPOs in the sample that oversee tissue donation, OPOs train
hospital staff to be designated tissue requestors.)
Educational
interactions addressed topics such as brain death criteria, donor
identification, referral, consent and recovery processes, mechanisms
for matching organs to recipients, transplantation processes,
recipient care, bereavement care, and criteria for donation after
cardiac death, among others. As noted by LifeLink, the goals of
brain death education for nurses and doctors include increasing
nursing staff awareness of the signs of pending brain death and
improving medical staff ability to communicate brain death status
to potential donor families so that messages are consistent and
clear.
OPOs
and hospitals target education to referring staff to raise awareness
and solve problems. OPOs and hospital nurse managers
noted that they target education to appropriate audiences, such
as hospital staff working in the units that see potential donors
(e.g., NICU, SICU, CCU, and MICU). ICU staff are most likely to
encounter potential donors, and targeting education to this group
affects referral rates and facilitates problem identification
and solving, according to OPO and hospital staff. Instances of
this type of education are the following.
- MTS specifically
targets education to referring physicians, raising their awareness
of organ donation and likelihood of calling MTS in the event
of a potential donor.
- At one
of its hospitals, NEOB offered more education sessions to the
medical ICU staff than staff in other critical care units because
this group was less experienced with organ donation.
- LifeLink
learned that declaring brain death was a rate-limiting step
in the referral process. In addition, the medical staff did
not clearly convey to potential donor families the status of
patients. To facilitate organ donation, LifeLink developed a
brain death curriculum for nurses and physicians.
Hospitals
seek education on a regular basis and in multiple ways.
Repeated education is needed to maintain awareness and proficiency
amidst staff turnover in hospitals and rotating resident staff
in teaching institutions. In addition, organ donation is an infrequent
event in hospitals; therefore, repeated education is needed to
remind staff of policies and procedures and roles to maintain
awareness of organ donation. OPOs deliver education in multiple
ways: group sessions, one-on-one informal discussions, manuals,
rounds, newsletters, letters, social settings, among others. OPOs
and hospitals commented that multiple means of education facilitate
learning and interest in organ donation efforts.
- Most OPOs
hold monthly (and/or other periodic) in-service training sessions
for hospital staff at their high potential hospitals. In-services
for the SICU residents at one of NEOB’s hospitals are
scheduled for the first Thursday of every month so staff can
plan in advance to attend.
- The majority
of hospitals invite OPOs to conduct a session on organ donation
in their new staff orientations for nurses. In addition, several
hospitals pair new nurses with preceptors to educate them about
organ donation. MTS provides quarterly presentations for new
hires. At one of the hospitals in UWHC OPO’s service area,
organ donation appears on the new staff orientation checklist
as a matter that must be reviewed with new hires. NEOB and Donor
Alliance hospitals incorporated organ donation into some of
their hospitals’ critical care nurse orientation programs.
- The biennial
symposium on organ donation and transplantation hosted by UWHC
OPO provides a 2 day program of educational sessions for health
providers, addressing key issues including the challenges and
trends of the consent process, and current advances in the field
of transplantation. Over the last 10 years, hundreds of health
care providers in UWHC OPO’s service area have attended
and hospital staff have commented that the symposium has a great
impact on raising nursing staff awareness.
- A high
potential hospital in NEOB’s service area simulated an
organ donation case during one of its rounds to educate staff
about the donation and transplantation process. Increased familiarity
among hospital staff reportedly improves organ donation performance.
The same hospital plans to simulate another case related to
donation after cardiac death.
OPOs
provide incentives to participate in educational sessions in hospitals.
Incentives offered by OPOs range from providing meals to continuing
education units to grants. Coupling education with incentives
results in higher attendance and enthusiasm to participate.
- Hospital
staff consistently remarked about the food OPOs provided during
in-services and other interactions. NEOB provides food at grand
rounds at one of its hospitals when making an organ donation
presentation. In Denver, departments take turns putting in their
requests for “theme meals” that are provided by
Donor Alliance staff at their regular presentations. MTS staff
cater to specific food preferences of hospital staff to show
them that the OPO appreciates their efforts in identifying and
maintaining donors.
- LifeLink
works with one of its hospitals to incorporate organ donation
into the hospital’s continuing education seminars, for
which staff receive class contact hours.
- UWHC OPO
provides educational grants to nurses for receiving further
training in organ donation by attending seminars, workshops,
courses, and the Transplant Games, i.e., the “Olympics”
for transplant recipients.
OPOs
tailor education to accommodate hospital staff’s schedules,
preferences, and needs. OPOs seek to smoothly integrate
education into the hospital environment with minimal intrusion.
All OPOs mentioned that they conduct educational sessions at times
that are convenient for hospital staff.
- LifeLink
determined that, contrary to agreed-upon procedures, physicians
at one of its high potential hospitals were still approaching
families about organ donation and making requests for consent.
LifeLink increased its education in this hospital to reinforce
understanding that OPO requests lead to better donation outcomes.
- Because
hospital staff members are increasingly accustomed to evidence-based
practice, LifeGift tailors its teaching and in-service approach
to include data and graphics to support practice.
- LifeLink
recruits a high-level physician, preferably a neurologist, to
deliver its brain death education lecture during the hospital’s
new house staff orientation session.
Best
Practice 11: Design, implement, and monitor public education and
outreach efforts to achieve informed consent and other donation
goals.
OPO
staff described a range of education and outreach efforts, as
well as a range of opinions regarding their effectiveness. While
most OPO leaders expressed confidence in the utility of these
efforts, some indicated that they have detected no cause and effect
relationship between these efforts and organ donation performance,
and therefore have diminished them. Most OPO leaders concur that
education and outreach efforts should be monitored for their impact
on organ donation, and revised accordingly.
OPO public
education and outreach efforts focus on increasing community awareness
of organ donation and transplantation, with the ultimate goal
of increasing organ donation. Some OPO and hospital staff believe
that prior education about organ donation has helped to attain
higher consent rates. These staff note that, given the difficulty
of making decisions under tragic circumstances, families may be
more likely to decline donation if it is the first time they are
exposed to the concept. Staff report that increasing organ donation
awareness within the community prompts families to have conversations
about organ donation. This may have a positive impact on the willingness
of families to consent to donate and even to raise the topic before
hospital or OPO staff would raise it.
OPOs reported
a variety of venues through which they deliver public education
and outreach messages, including television, radio, and newspaper
ads, mailings and newsletters, as well as at schools, civic clubs,
and other community locations. In many of their public outreach
campaigns, OPOs highlight the personal impact of organ donation
by inviting transplant recipients and donor families to describe
the benefits of organ donation. Some transplant centers reported
investing in public education efforts, such as celebrating transplantation
successes or promoting living donor programs.
In the limited
sample, hospital staff tended to indicate more often than OPO
staff that public education contributed to higher performance.
Most OPO leaders reported investing minimal resources in this
area since it was difficult to measure the impact on improved
consent rates or other donation outcomes. OPOs that do invest
any substantial resources in public education and awareness tend
to focus these on specific areas with proven or highly likely
success. They described public education as a best practice only
when it had a specific purpose and yielded measurable increases
in consent rates. The following strategies were reported by OPOs
and hospitals as yielding higher performance.
OPOs
in States with registries promote them.
- MTS invests
resources to promote its State organ donor registry. Also, MTS
reports some benefits for informed decision-making by families
by sharing registry information with families when it is available
for potential donors. In June 2002, MTS communication center
staff began sharing registry information with hospital staff
in real time. In the first 7 months of operation, there was
a 30 percent decrease in the number of families declining donation;
52 families presented with registry information were positively
influenced by it, resulting in 43 donors. MTS also printed the
State donor registry form in the St. Louis Post-Dispatch, resulting
in enrollment of 627 people on the donor registry.
- Similar
to MTS, Donor Alliance also values its investment in promoting
the State organ donor registry. The registry lists everyone
who has indicated their wish to be an organ and tissue donor
through the DMV on their driver’s license or identification
card. It also helps to ensure that a person’s wish to
be a donor is known since, in many cases, a license or State
identification card is not available at the time of death. Staff
reported many instances in which family members showed relief
upon learning that their loved one was on the registry, removing
the need for one more family decision during a time of stress.
Donor Alliance promotes the registry through various media,
including radio and television commercials, print ads and posters
on buses, and tracks the campaign’s effectiveness by monitoring
web site activity. In January and February of 2003, more than
35,000 people visited the registry web site and received information
about organ and tissue donation.
Some
OPO and hospital staff believe that increased awareness and advanced
discussions of organ donation contribute to increased consent
rates.
- UWHC OPO
and its hospital staff reported raising awareness in the community
by promoting advanced directives at community civic club presentations.
At these presentations, OPO and hospital staff distributed “Share
Your Decision, Share your Life” packets from Rotary International
to attendees. These packets include organ donation commitment
forms and tools to communicate organ/tissue donation preferences
to local hospitals, family members, and friends. Hospital staff
reported that these interactions and materials about advance
directives make organ donation decisions easier for families
and have contributed to higher consent rates.
- Some hospitals
in UWHC OPO’s service area conduct advance care planning
with patients and families upon admission to the hospital. Hospital
personnel proceed through a form of “end of life decisions,”
which includes questions regarding organ donation and preferences
regarding which organs and tissues may be donated. The form
becomes a part of the patient’s medical record, making
the decision about organ donation easier for families. While
not every patient who enters the hospital completes this form
(trauma cases typically do not), hospital staff reported a greater
likelihood that a family member has been exposed to the subject
of organ donation after having gone through the process of completing
the form for another person. Hospital staff reported that this
leads to more families raising the subject of organ donation
to hospital staff.
Some OPO staff
suggest that the degree to which public education and outreach
affect organ donation consent rates varies by community. They
note that community characteristics such as population size, racial
and ethnic make-up, income level, education level, and other factors
may affect the impact of public education and awareness on achieving
increased consent rates.
Some
OPOs target public outreach efforts to specific ethnic groups.
- Upon analyzing
regional and national data, OPOs observe ethnic differences
in organ donation behavior. In an effort to realize some of
the untapped potential in certain groups, LifeLink uses materials
developed by the Coalition on Donation that are written in different
languages to target these ethnic groups. In addition, billboards
are reported to have been particularly successful in Puerto
Rico.
- LifeGift
worked to enhance its community partnerships through the African-American
Clergy Outreach Program. This program sought to garner support
for organ donation by spreading the word through church leaders.
- In the
past year, Donor Alliance targeted the African-American community
through a series of television and radio commercials. It also
tailored messages to the Hispanic community by developing a
brochure written in Spanish that was distributed at Cinco de
Mayo events.
Never
lose an opportunity to make a positive, lasting, and communicable
impression on donor families and others in the community.
In contrast
to the lack of agreement regarding broad public awareness campaigns,
all OPOs and hospitals concurred that actual donation experiences
present important opportunities to inform families and, indirectly,
their networks of contacts, about the benefits of donation. Some
hospital staff noted the importance of making the organ donation
experience a positive one for donor families. Donor families share
their organ donation experiences with their communities and can
thus influence the community’s perception of organ donation.
Some hospital staff reported that the awareness generated by donor
families’ positive experiences with organ donation at their
hospitals leads to increased consent rates.
- Some hospital
OR staff in Wisconsin reported that they make an extra effort
to interact with each donor family after their loved one’s
organs have been procured, assuring them that the donor was
treated with dignity and respect during the procurement process.
OR staff noted the importance of this communication with the
donor family, since it may be the last impression with which
they leave the hospital and can significantly affect their perception
of organ donation and how they share their experience with the
community.
- As noted
in more detail below, OPOs provide certain anonymous follow-up
information and expressions of gratitude to donor families regarding
the placement of their loved ones’ organs.
Best
Practice 12: Referral: anticipate, don’t hesitate, call
early, even when in doubt.
One
of the most important messages that OPOs convey in education sessions
and via regular contacts with hospital staff is to call in referrals
as early as possible to facilitate consent and organ recovery.
Among the hospitals visited, there was a common willingness to
make early referrals to the OPO and to consult its experts regarding
potential donations. OPO personnel have cultivated this inclination
by teaching the early signs of brain death and emphasizing the
importance of not waiting until brain death declaration to place
a call to the OPO. Instead, OPOs encouraged hospital personnel
to anticipate the event and recognize the signs and symptoms of
a patient who appears to be on the pathway toward brain death.
This practice
of early referral has penetrated into emergency room settings,
where one physician remarked that he is “already thinking
about organ donation” upon the arrival of certain types
of patients. At another hospital, the awareness of the potential
for brain death in certain patients and consideration of calling
the OPO has extended to EMS technicians in the field, who recounted
how they provided life support to a patient whom they knew had
virtually no chance of survival, but who appeared to be a potential
organ donor. As a result of experience as well as ongoing education
by OPOs, intensive and critical care and trauma staff expressed
such messages as “Call early, even when in doubt,”
“The sooner the better,” “Better safe than sorry,”
and “Consult the experts (i.e., OPO) when in doubt.”
One
means that OPO and hospital staff use for delivering the message
of early referrals is to teach hospital staff certain “clinical
triggers.”
- Brain death
identification is a crucial juncture in the critical pathway
of organ donation. Recognizing the importance of determining
brain death in a timely manner, LifeLink developed a brain death
curriculum for nurses and physicians and provides it as a service
to its affiliated hospitals.
- Many hospital
personnel rely on clinical triggers, e.g., neural insult, Glasgow
Coma Scale (GCS) of less than 4 or 5, and patient on a ventilator.
- LifeGift’s
in-house coordinators routinely distribute pen lights as a reminder
to call LifeGift when pupils are fully dilated.
- One Florida
physician now notifies LifeLink after the first brain death
test. Prior to brain death education by the OPO, this physician
would wait until after the second brain death test to make the
referral.
OPOs
work to dispel the many myths surrounding organ donation.
Even though a call has been placed to the OPO, treatment and care
for the patient are not compromised. OPO staff do not “hover”
waiting for organs but do discretely monitor the patient’s
condition. In most instances, no OPO staff approach families until
brain death has been declared and an appropriate introduction
of the subject has been made. For example, NEOB stresses to hospital
staff that when a referral is made, NEOB interaction with hospital
staff is limited to reviewing the chart to see if the patient
is a possible candidate for donation. If the patient is not a
candidate, NEOB thanks hospital staff for the referral. If the
patient is a candidate, NEOB works with hospital staff and will
approach only when medical staff permits. Some hospital staff
reportedly became more at ease making referrals to OPOs after
learning about how the body is treated during donation and that
open casket funerals are still options for families.
Some
hospitals have found that it is helpful to have a “go to”
person who is knowledgeable about donation in the unit, and new
staff can easily consult with this person when they are unsure
or uneasy about making a referral. This “go to”
person is often a nurse and has sometimes been identified by OPO
staff as an organ donation champion. Aside from their commitment
to and experience with organ donation, such nurses already may
be involved in providing end of life care of which organ donation
is a part. One hospital identifies these nurse champions and assigns
only these nurses to potential donor cases. The relationship between
physicians and nurses can influence the timeliness of referral.
In some hospitals, nurses are responsible for making referrals,
while in others, the decision to place the initial call is more
likely to rest in the physician’s hands.
UWHC and LifeLink
are among the OPOs that involve executive staff members on all
referrals. OPO coordinators view this involvement as an added
support, while hospitals appreciate the capacity for real-time
troubleshooting to facilitate the organ donation process.
Even
when referred patients do not progress to brain death or otherwise
do not qualify for organ donation, OPO response to a referral
is always positive, never punitive.
- UWHC OPO
experienced several cases where hospital staff did not call
because the patient’s heart might not be suitable, even
though the other organs were. The OPO addressed these types
of issues in their training, especially among new staff unfamiliar
with organ donation.
- Some nurses
in UWHC OPO’s service area hospitals reported that they
frequently call the OPO to notify them that there might be a
potential donor; this helps them determine early on whether
or not the patient is even a candidate for donation.
- Nurses
who had prior experiences with Donor Alliance expressed an eagerness
to “get them (the OPO) involved as early as possible,”
and welcomed their expertise in clinical case management.
- Staff at
hospitals within LifeLink’s service area remarked that
“There is no such thing as a bad referral” and “There
is no downside to calling” the OPO.
- In one
SICU within NEOB’s service area, medical staff noted that
everyone in the unit is able and willing to call NEOB, even
when in doubt. They attributed this to NEOB’s constant
feedback and positive reinforcement for making the call. NEOB
always thanks staff for making a referral regardless of patient’s
medical suitability.
Hospitals
perceived the early call as relieving the burden of making decisions
about a patient’s medical suitability. The call also triggers
the arrival of additional staff resources at the hospital, which
can relieve some burden of patient care, family care, and ultimately
donor management. Other positive outcomes attributable to an early
referral included more time for the OPO to establish a relationship
with the family and hospital staff, and more time for monitoring
the patient for medical suitability.
Best
Practice 13: Draw on respective OPO and hospital strengths to
establish an integrated consent process. One size does not fit
all, but getting to an informed “yes” is paramount.
Obtaining
consent can be an intricate process that is highly dependent on
the cooperation and skills of OPO staff, physicians, nurses, pastoral
care staff, and social workers. The roles in the consent process
are largely consistent across high performing sites; however,
they may be carried out by different combinations of staff. Interacting
with a potential donor family to achieve an informed consent to
organ donation usually entails a particular sequence of time-sensitive
events and carefully conveyed communications, all within a context
of trust. The staff that are involved in managing these events
and communications vary among OPOs and their affiliated hospitals.
Of course, those involved in the consent process must be able
to adapt to a range of circumstances and dynamics, including situations
in which families raise the issue of donation themselves prior
to OPO or hospital staff.
OPOs
and hospitals start early to understand family dynamics, monitor
status, and support family needs. The organ donation
process is highly time-sensitive. After brain death is declared,
there is only a small window of time to secure consent. OPO and
hospital staff involved in the consent process reported the importance
of “setting the stage” for consent well ahead of the
declaration of brain death or withdrawal of support (in the cases
of non-heart-beating donors). OPO and hospital staff emphasized
the importance of establishing a strong relationship with the
donor family and earning and maintaining their trust in achieving
informed consent to donate. Though OPOs had slightly different
approaches to connecting with donor families, all approaches involved
becoming familiar with family dynamics and establishing a relationship
with the key family decision-makers.
Staff involved
in the consent process establish relationships with families and
earn their trust by providing them support throughout their time
in the hospital. Family support involves, for example, being present
during physician conversations, helping families understand the
clinical aspects of their loved one’s condition, bringing
the family food and blankets, listening to their stories, and
helping them with funeral planning and other logistical matters.
OPO staff, physicians, and nurses concur that providing this type
of family support is essential for securing family trust and increasing
the likelihood of their giving consent to donate.
Physician
attitudes and actions early in the treatment of a patient are
extremely important in establishing the trust of a family. All
interviewees noted the importance of ensuring that the potential
donor family knows that the medical staff has done everything
possible to save their loved one’s life and provide for
their comfort as much as possible. Examples of how OPOs and hospitals
conduct this process include the following.
- Some hospitals
reported that assigning experienced organ donation nurse champions
to potential donor patients helps to secure the family’s
trust and set the stage for obtaining consent. Nurses who are
knowledgeable about donation and who are skilled and experienced
in working with families can lay the foundation for the request,
whether by themselves or other staff. Some hospitals reported
not assigning nurses who were not strongly supportive of donation
to potential donors so as not to put them in an uncomfortable
situation that might also jeopardize the opportunity for a consent.
- Most OPO
family support staff reported the importance of gaining early
information from nursing staff, social workers, and/or pastoral
care staff regarding the family dynamics of potential donors.
Due in part to OPO education, hospital staff reported paying
special attention to family dynamics and relaying this information
to OPO requestors or keeping it in mind when approaching families
themselves for consent. This type of “surveillance”
information was reported to be extremely useful in tailoring
approaches to families for consent.
- One pediatric
intensivist in Colorado explained how he serves as the bridge
to organ donation when there is no hope for the patient’s
survival. It is this physician’s preference to introduce
the subject of organ donation to the family and then introduce
OPO staff. He believes that the family’s trust in him
will positively influence the organ donation process.
- In St.
Louis, it was reported that families establish closer bonds
with intensivists who tend to spend more time with the patients
than neurosurgeons. The intensivists prepare the families for
the pending brain deaths of their loved ones.
- All OPO
staff and hospital staff involved in the consent process noted
the importance of supporting the family throughout their experience,
regardless of their decision to donate. If a family is not able
to donate for a specific reason, they still can share the perceptions
of the OPO and the organ donation process with their community.
Therefore, it is important to make this experience a positive
one for them regardless of their decision.
OPOs
work as a team with hospital staff to determine the right person(s)
to raise donation and make the request. All interviewees
involved in the consent process noted the importance of the OPO
and hospital staff working as a team when preparing families for
the prospect of organ donation and making the actual request.
OPO and hospital staff noted the importance of working collaboratively
in front of donor families in securing their trust.
Interviewees
concurred that the requestor should be an individual with the
strongest connection or bond with the family, whether it be an
OPO family support staff member, physician, nurse, chaplain, social
worker or other person that has a relationship with the family.
In addition, this must be a person who is highly familiar with
organ donation and has a history of achieving families’
consent to donate. Four of the 6 OPOs visited have dedicated family
support staff who are the preferred requestors, based largely
on their demonstrated ability to achieve high consent rates. Although
OPO family support personnel make the request in many of the sites
visited, hospital personnel often are the first to raise the topic
of organ donation to the family and then introduce the OPO family
support person who proceeds with the consent process.
In several
instances, the family support and requestor role is taken on by
hospital staff, including by attending physicians (especially
intensivists), nurses, chaplains, and others. In other cases,
OPO staff, nurses, and chaplains approached families as a team
when they judged that this approach would be beneficial in securing
a consent. Some OPO and hospital staff reported taking the donor
family’s race or ethnicity and language into account when
deciding who should make the request. Most staff who offered an
opinion on this matter concurred that bilingual requestors are
preferred (or that a trusted staff person who speaks the same
language be present) when English is not the first language, even
when family members speak English as a second language. Several
OPOs in urban areas noted that matching same race requestors was
beneficial within the African-American population. However, other
OPO and hospital staff reported this to be less important for
securing consent. As noted above, while the individuals making
the request were different from site to site, they were consistently
the ones who had established the strongest rapport with the family.
The following
represent some strategies used by OPOs and hospitals for determining
who should request.
- LifeGift,
LifeLink, and NEOB reported higher consent rates when OPO family
support staff were the requestors. Hospital staff in their service
areas came to concur with this, and generally comply with instructions
to defer the request to the OPO staff.
- MTS has
found that higher consent rates are achieved when MTS family
support staff make the request. However, requests are occasionally
made by physicians (especially intensivists) when the opportunity
arises. The subject is generally introduced by the physician
after the first brain death exam. Nurses, pastoral care staff,
and MTS family support staff are usually present at this declaration.
The physician usually then defers to the OPO to discuss organ
donation further with families. Using a team approach, MTS family
support staff work together with the nurses, doctors, chaplains,
and social workers. Pastoral care staff are certified requestors
and are the official requestors for tissue donation.
- Hospital
staff in UWHC OPO’s service area are responsible for obtaining
consent. The OPO provides training and certification for certain
individuals at hospitals to become designated requestors. These
individuals usually are key referring physicians, ICU and trauma
nurses, pastoral care staff, or social workers. They often work
together when approaching families. Every hospital in the service
area has a slightly different arrangement regarding designated
requestors. For UWHC OPO’s hospitals, the person with
the strongest bond with families is usually an ICU staff nurse.
Often, the physician raises the subject after announcing the
results of the first brain death exam, or asks the nurse to
mention it to the family. OPO and hospital staff report that
physicians are also successful requestors in this community,
and that there is no perceived conflict of interest in the roles
of doing the best to save patients’ lives and then inquiring
about donation. Staff emphasize that families welcome an opportunity
to realize some good from their loss, and that they trust these
hospital staff members to help make this transition.
- Donor Alliance
has 2 bilingual family support personnel. Staff there emphasized
how the ability to communicate with the family in their language
facilitated and expedited establishing a trusting relationship.
- MTS found
matching same race requestors for African-American families
to be extremely successful. For MTS, this practice caused their
consent rate in this population to increase from 19 to 50 percent
over 10 years.
It
is critical to ask at the right time. Timing is critical
to securing consent. Interviewees noted the importance of addressing
all of the family’s needs and establishing the family’s
trust before any discussion of donation. They also emphasized
the importance of not rushing a family through their grief; this
may include maintaining care for the patient in a manner that
allows the family needed time with their loved one. Interviewees
noted that inquiring about donation too early could be damaging
and lead families to decline donation.
Three of the
6 OPO sites reported decoupling of discussions of brain death
and organ donation. Half of the OPOs did not view this decoupling
of messages as necessary. One OPO cited recent research on the
topic; another OPO noted that decoupling is a preferred policy
but not mandatory. The requestors at these sites attempt to prepare
the family as early as possible as appropriate for potential brain
death and the possibility of organ donation, in case the need
for these discussions arise.
In some cases
involving the prolonged demise of a patient, OPO or hospital staff
have considered it appropriate to raise the subject of donation
even before the results of the first brain death exam, since the
family has had more time to face the seriousness of their loved
one’s condition. There was no general consensus on this
approach and it seemed to often depend on physician preferences
and the specific family or other circumstances. However, decoupling
was consistently reported for cases of donation after cardiac
death (DCD). Decoupling of withdrawal of care and organ donation
discussion for cases of DCD was viewed as essential by all OPO
and hospital staff. Some of the strategies used by OPOs include
the following.
- MTS family
support staff and other hospital requestors generally do not
discuss donation until the family understands the clinical aspects
of their loved one’s condition. MTS usually waits until
after the physician has announced the results of the first brain
death exam and after the family has had time to deal with the
news before bringing up the subject of organ donation. MTS has
found that routine decoupling of messages is not necessary;
instead, they seek to determine when the family appears to be
prepared to consider donation.
- In Wisconsin,
designated requestors reported pursuing donation when they see
an opportunity to raise it. While it is typically brought up
after the results of the first brain death exam, some nurses
use their judgment to gauge the situation and may bring up the
topic before the first brain death exam. OPO and hospital staff
in this and other service areas reported that families increasingly
are raising the subject of donation prior to hospital staff.
Requesters
are trained to ask in the right way. All OPOs reported
some type of mandatory training for requestors. This includes
careful consideration of the timing of the request, usually once
a family accepts the declaration of brain death or decision to
withdraw care. OPO requestors reported that it is important to
frame the discussion in terms of presenting them with the information
and “giving them the opportunity to donate” rather
than forcing a “yes” or “no” answer.
Requestors
noted that it is necessary to approach the family in a caring,
compassionate, and understanding manner. They should never underestimate
how difficult a decision this is for families. Requestors must
first help families perceive the actual physiological state of
their loved one. Organ donation should be discussed very carefully,
taking the family’s feelings and emotional state into account
as well as family dynamics and other factors. Some requestors
reported presenting the donation request as a personal story,
giving examples of transplant recipients or asking families what
they think their loved one would have wanted. Requestors must
also be able to provide the family with information about the
donation process. Requestors also need to support the family throughout
the entire decision-making process.
- All OPOs
reported providing training programs for individuals who wish
to be designated requestors. Training involves role-playing
so that requestors will have the opportunity to practice choosing
their words, demeanor, etc.
- Requestors
must be mindful of matters of culture, race, ethnicity, language,
and religion. Chaplains at one hospital affiliated with MTS
produce information packets on religious aspects of donation
to answer potential donor families’ concerns.
Reapproach
if needed. All interviewees involved in obtaining consent
cited the appropriateness of reapproaching families under certain
circumstances.
- MTS only
reapproaches if there is a reason to think that it will make
a difference. If the family seems to be basing its decision
not to donate on inaccurate information or assumptions or unfounded
fears, MTS family support staff try to address these matters,
and then reapproach. If the family appears to need more time
to grieve before facing the prospect of donation, staff will
reapproach after an appropriate interval. However, if the family
is adamantly against donation for specific personal or other
reasons, then MTS will not reapproach.
- UWHC OPO
only reapproaches if staff believe the family is basing its
decision not to donate on inaccurate information. For example,
some families believe, inaccurately, that the organ procurement
is done without respect or regard for the integrity of the body,
and that it will not be possible to have an open casket at the
funeral.
- LifeLink
staff reapproach families if the first response is negative,
to ensure that the family based its decision on the correct
information. If a family’s decision not to donate appears
to be based on incorrect assumptions or myths about donation,
LifeLink will reapproach the family with appropriate information
to support a more informed decision.
OPO and hospital staff should be prepared to adapt to
particular family needs or requests to facilitate organ donation.
- In one
case, the mother of a potential donor would only agree to donation
if she could be present in the operating room during the organ
procurement. Although this was contrary to usual hospital policy,
OPO and hospital staff arranged to allow this, resulting in
obtaining a consent that they would not have gotten otherwise.
- In another
case, an OPO and its affiliated hospital obtained permission
from the hospital’s legal department to perform a DCD
donation without a formally accepted policy (the policy was
in draft form) to accommodate a family’s wish to donate
their loved one’s organs.
Best
Practice 14: Use data to drive decision-making.
All
of the OPOs and most hospitals cited the importance of data-driven
decision-making to improve organ donation and focus their resources
appropriately. By regularly collecting and reviewing data on the
organ donation process and performance, including conducting surveys
at hospitals to identify areas of improvement, OPOs and hospitals
enhance their decision-making and strategic planning. Using data
to inform decisions helps OPOs and hospitals to maximize referrals,
consents, and donors in their service areas. Approaches to data-driven
decision-making were quite consistent across the sample.
OPOs
conduct regular death record reviews (DRR) in all hospitals to
identify those with the highest donor potential and determine
ways to increase donations. All of the OPOs reported
conducting regular reviews of all death records in order to identify
the hospitals in their service areas with greatest donor potential.
Some OPOs reported conducting DRR on a monthly basis, while others
did so daily.
Most of the
OPOs noted that they use regular DRR to investigate how to expand
donations through identification of missed referrals. OPOs compare
all referrals received to all reported hospital deaths to ensure
that all potential donors are identified. Data on missed referrals
are collected and used to inform referral education sessions for
hospital staff.
OPOs
focus more resources on hospitals with the highest donor potential.
OPOs reported using DRR data to categorize their hospitals into
different groups or “tiers” based on their organ donation
potential, which they use to determine where to focus their resources.
All OPOs reported using this “tiered” approach under
the presumption of an “80/20 rule,” i.e., that 80
percent of their donor potential exists in 20 percent of the hospitals
in their service areas. Most OPOs reported focusing their resources,
including staff, education sessions, and outreach and relationship-building
efforts, on their high donor potential hospitals. For example,
MTS focuses most of its resources on the top 12 (out of 112) hospitals
that account for 60 percent of its donor potential. MTS hospital
development staff are allocated equally among these 12 hospitals
so that each staff member can focus time and effort on one high
donor potential hospital.
OPOs
regularly collect, monitor, and share referral, consent, and other
organ donation data to improve organ donation performance.
Most OPOs reported producing hospital-level reports to influence
improved organ donation performance at hospitals. OPOs tailor
these reports to individual hospital preferences to facilitate
hospital quality improvement. OPOs also review data trends by
hospital to compliment successes and suggest areas for improvement.
OPOs that also run tissue programs reported both organ and tissue
donation outcomes to hospitals.
- Some hospital
respondents reported “friendly competition” among
transplant centers and hospitals as a motivator to improve organ
donation performance. In one Boston hospital, OPO liaisons provided
data by critical care unit, which hospital staff posted to foster
friendly competition. Similarly, MTS publishes hospital-level
data in its Request Line newsletter, enabling nursing staff
to compare referral and donation statistics among competing
hospitals. Nurses reported that this sense of competition led
to improvements in referrals and consents.
- LifeLink
provides monthly organ donation data reports to the hospitals
visited. Nursing directors, striving for 100 percent referral
rates, review these data reports regularly. If they identify
missed referrals, they follow up with the nurse who missed the
referral, as required by one of the hospital’s senior
administrators.
- When reviewing
their organ and tissue donation data, administrators at one
UWHC OPO-affiliated hospital noticed that while their performance
in organ donation was above average, their tissue donation performance
was poor. They conducted an informal survey at their hospital
to determine the cause of their poor tissue donation performance
and found that it was due to a lack of education among physicians
and nurses regarding identifying potential tissue donors. Therefore,
they instituted more training for their physicians and nurses
in order to increase their performance in this area.
Some
OPOs survey hospital staff to identify areas for improvement.
About half of the OPOs noted the importance of surveying hospital
physicians and nurses in order to identify areas requiring change
to improve performance. For example, MTS hired an independent
firm to conduct a formal customer satisfaction survey of physicians
and nurses in hospitals every few years to identify areas for
improvement. In the survey, hospital staff identified many areas
for improvement, including: increasing public awareness, respecting
the physician-patient family relationship, timely assessment of
donor suitability and medical management, the request process,
emotional aspects of dealing with families and tragic deaths,
personal visits by MTS coordinators, feedback on outcomes, communication
with physicians, protocols for DCD, updates and training, and
successful harvest of organs suitable for transplant. MTS staff
used these survey results and recommendations to alter and improve
services to its hospitals.
Best
Practice 15: Follow up in a timely and systematic manner. Don’t
let any issues fester.
All
of the OPOs and hospitals reported the importance of conducting
timely internal and external review of cases. OPO staff reported
that follow-up usually involved giving positive, constructive
feedback as well as identifying and solving problems in the donation
process. OPO staff, physicians, and nurses affirmed that timely
and systematic feedback was crucial to increasing awareness and
improving organ donation processes at hospitals, thereby maximizing
the number of early referrals and actual donors at hospitals.
Immediate problem solving was another contributor to success.
Several respondents noted that when the organ donation process
breaks down or when an aspect of the process has been poorly handled,
it must be resolved as soon as possible so as not to adversely
affect future events. OPOs and hospitals conduct follow-up both
formally and informally, using a variety of techniques outlined
below.
OPOs
hold regular review sessions to debrief activities, discuss lessons
learned, discard practices that are no longer working, and learn
from peers. Staff at all of the OPOs stated the importance
of holding regular meetings to review events and pointed out that
this type of debriefing was extremely important in troubleshooting
and improving organ donation processes at their hospitals. During
these reviews, corrective feedback is not punitive but instead
leads to further collaboration and brainstorming on ways to the
achieve improvements. Most OPOs reported holding meetings on a
weekly basis, both within role specialization and across role
specializations in order to keep all staff up-to-date and informed.
- MTS holds
weekly meetings that are attended by all OPO staff, including
family support staff, hospital development staff, and clinical
coordinators, to review events of the previous week. OPO staff
noted that these meetings were essential to effective trouble-shooting.
- LifeLink
also reported holding “Monday meetings” at which
they review each referral from the previous week. These meetings
are attended by all OPO staff, regardless of their involvement
in a case. OPO staff review cases in their entirety and any
problems related to a case are discussed and pursued by the
hospital development coordinator within 24 hours of identification.
- LifeGift’s
organ donation coordinators reported meeting weekly to discuss
the prior week’s events, with the purpose of dissecting
successes and failures and developing solutions as needed. Staff
reported that debriefing discussions during these “week
in review” meetings are conducted in a non-threatening
manner and help staff identify areas for improvement.
At
affiliated hospitals, OPOs follow up and provide feedback to staff
on the process and outcomes of each organ donation case.
The staff of all of the OPOs as well as physicians and nurses
asserted the value of following up with hospitals after each organ
donation case. OPO staff noted the importance of 2 components
of follow-up: debriefing with hospital staff involved in the case
about the process and notifying hospital staff about the placement
of organs and the transplant recipients.
All of the
OPOs cited some type of debriefing with hospital staff on each
organ donation case. This follow-up is either formal or informal
and is arranged to avoid conflicts with hospital staff schedules.
Feedback drives improvement in donation performance and is never
punitive. Physicians and nurses in particular reported using this
feedback and sharing it with staff at organ donation meetings
or other multidisciplinary committee meetings in order to aid
in problem solving. Hospital staff also reported that timely feedback
is important, finding that, months after a case, information becomes
stale and the opportunity for problem solving is lost. Many nurses
reported that the ability to access OPO staff easily for feedback
on an ad hoc basis was extremely useful and increased their willingness
to refer cases to the OPO.
- MTS and
UWHC OPO staff reported touching base via phone or in person
with hospital staff to follow up on every case and to identify
any areas of the process that could have gone more smoothly.
- NEOB and
Donor Alliance reported trying to schedule post-donation conferences/
debriefs with all hospital staff directly involved in a case.
Soon after the event, OPOs gather all hospital staff involved
in the process to debrief on what went right and areas for improvement.
Post-donation conferences are usually conducted in the ICU to
accommodate busy hospital staff. Other sites debrief informally.
- OPOs,
including NEOB, LifeGift, and UWHC OPO, reported conducting
regular case reviews where donation cases are reviewed with
hospital staff for education purposes.
OPOs
give feedback to hospital staff regarding organ placement and
transplant recipients. OPOs send personalized letters
of thanks to all hospital staff involved in a donation and inform
them about the people who benefited from their efforts. Although
these letters do not mention names of recipients, they do provide
some descriptive information about the people who received organs
and tissues and how their lives have changed. OPOs reported reviewing
medical charts to ensure that every single person involved in
the case receives a letter, no matter how small their role. Sometimes
hospital staff also receive letters of thanks from the transplant
recipients. These letters are usually posted in highly visible
places in the units.
All hospital
staff reported that this communication is valued and influences
organ donation performance, starting with early referrals. Many
staff see letters as providing a positive outcome after having
lost a patient. Letters increase medical staff awareness of organ
donation, validate their important role in the process, and allow
them to celebrate the success of their participation. Some staff
reported that “It is one of the most satisfying parts of
my job.”
OPOs
follow up with donor families after donation. Many OPO
and nursing staff reported some type of follow-up with donor families.
All OPOs reported communicating with donor families through phone
calls and letters following various lengths of time after donation
in order to reconnect and contribute to making the donation experience
a positive one. Donor families share their organ donation experiences
with the community through word-of-mouth and can be valuable advocates
for donation in public awareness campaigns.
- LifeLink
calls the donor family the morning after donation and sends
a thank you letter one month following the patient’s death.
At 2 months, LifeLink sends the family a medallion, and at 6
months, surveys the family about their satisfaction with the
experience. At the one-year anniversary of the donor’s
death, the family receives another card.
- Some OPOs
and hospitals also reported holding annual remembrance services
for donor families. Nurses reported that these services are
greatly appreciated by donor families and encourage their own
participation in donation.
Staff
at all of the OPOs and hospitals emphasized the importance of
immediately resolving problems in the organ donation process.
OPO and hospital staff reported that once a problem is identified,
the parties involved need to take immediate action by communicating,
planning, and acting on a solution. Because the success of the
organ donation process hinges on key relationships among referring
physicians and nurses and OPO staff, it is imperative that the
strength of these relationships is not jeopardized. Physicians
and staff noted that they valued the prompt action from OPO staff
in response to problems.
- In one
instance, a key referring physicians at an OPO’s high
potential hospital was offended by the contents of an organ
donation-related publication and notified the OPO that he was
no longer going to make an effort to make referrals to the OPO.
The OPO’s executive director immediately called the physician
to resolve the misunderstanding and restore his confidence in
the OPO. Resolving this situation was imperative since this
individual was one of their top referring physicians and had
great influence over other physicians and nurses at the hospital.
- The OPO
liaison at one hospital wrote a letter of complaint to the OPO’s
executive director after one of the surgical residents on the
organ procurement team sent by the OPO reportedly treated the
hospital’s OR staff with a lack of respect. The executive
director took this feedback very seriously and warned his surgical
staff that this behavior would not be tolerated and disciplinary
action would be taken if this were repeated in the future. The
hospital was pleased with how the OPO responded to this incident,
and no further problems have been reported with recovery teams.
- When one
OPO switched to the STATLINE answering service for calling in
referrals, there were initial problems in getting the system
to operate properly. One physician called in a referral and
waited an hour for a response. He notified the executive director
that the response time was unacceptable, and the OPO responded
and resolved the problem immediately.
E.
Implementation Considerations
OPOs
and hospitals must consider many implementation challenges as
they move to replicate best practices. These issues are organized
into 2 main categories: barriers and facilitators. Many of these
are introduced or otherwise discussed in the context of best practices.
The strategies employed to realize best practices can help to
overcome these barriers, and can be more readily implemented by
the facilitators.
1.
Barriers
1. In a subset
of hospitals, the process of organ donation was fully ingrained
in the hospital culture, sometimes for 2 or 3 decades. In others,
both OPOs and hospital champions were still working together to
overcome hospital resistance to organ donation. Potential barriers
that were noted include the following.
- Some hospitals
and physicians do not perceive organ donation efforts to be
a part of the hospital’s primary business or routine.
Some hospital administrators and physicians reported a feeling
of being “overextended” with primary patient care
responsibilities and noted that competing demands on providers’
time may prevent them from making organ donation a priority.
- Some physicians
find it burdensome to make the telephone call to the OPO for
every death, particularly when it is apparent to them that the
patient involved is not an organ donation candidate.
- Some respondents
noted the perception that an early call to the OPO could mean
that medical staff are not doing their best to save a patient’s
life. They expressed concern that early calls to an OPO might
be viewed as unethical and may be interpreted incorrectly by
families. For these reasons, some individuals reported being
reluctant to contact the OPO “too early.”
- In the
past, prior to implementation of the Medicare Conditions of
Participation, hospital staff were usually the personnel responsible
for approaching families about donation. For some nurses and
physicians, making the transition from asking to not asking
was a difficult one, requiring education and other interventions
by the OPO.
- Hospital
staff articulated the important role they play in doing everything
in their power to save patients’ lives. Several physicians
reported difficulty in making the transition from trying to
save a patient’s life to trying to maintain the donor
in order to save lives of other patients. These physicians,
particularly neurosurgeons, view brain death as a failure and
as an event that marks “the end of treatment” for
a patient. These perceptions make it difficult for physicians
to plan the patient’s trajectory of care beyond the declaration
of brain death, in preparation for possible organ donation.
- Some hospitals
are under financial and capacity constraints, with tight margins
and overcrowded emergency departments. Hospital executives may
assume that supporting organ donation could subtract further
from their bottom line, as a result of donors occupying beds,
using critical care, and operating room resources.
2. The lack
of agreement on declaration of brain death can be a barrier to
organ donation. While some hospitals have strict clinical criteria
and protocols in place for declaring brain death, others do not.
The lack of clear criteria and protocols for declaration of brain
death can cause delays that lead to the decreased viability of
organs.
3. Growing
medical liability premiums for neurosurgeons can also be a barrier
to donation. One neurosurgeon reported that the support of organ
donation could be perceived as unethical for his specialty. As
noted above, some neurosurgeons report that brain death constitutes
a failure of their professional efforts.
4. Potential
or perceived conflicts of interest arise in pursuit of organ donation
and transplantation goals. Some hospital administrators, neurosurgeons,
and transplant surgeons indicate that there could be a perceived
conflict of interest in the pursuit of saving lives and procuring
organs, especially at transplant centers.
2.
Facilitators
1.
Donor registries can function as advanced directives. Hospital
staff in States with organ donor registries reported the benefits
of organ donor registries, especially if they act as advanced
directives. Donor registries may remove the decision-making burden
from the family. In addition, hospital staff reported that donor
registries appear to increase the likelihood of families discussing
organ donation issues in advance of a potential organ donation
situation. This may increase family awareness and knowledge, and
the probability that they will be more amenable to donation should
the circumstance arise.
2. Tissue
donation can complement and improve organ donation. OPO leadership
reported multiple benefits of pursuing tissue donation. They reported
that the higher frequency of tissue donation seems to: raise awareness
in hospitals of donation, in general, and give OPO staff more
opportunities to interact with hospital staff. OPOs that manage
tissue donation are able to offer a streamlined process for hospital
personnel whereby they only have to contact one organization,
the OPO, for both organ and tissue related matters. Revenues from
tissue donation are often used to support other OPO activities,
including those that promote organ donation.
3. Living
donation programs contribute to other donation efforts. Living
donation programs have been growing across the U.S. For example,
in the past several years, laparoscopic surgery has made kidney
removal a much less invasive procedure with a significantly shorter
recovery time; as a result, more people are choosing to become
living donors. Living organ donation programs, including altruistic
non-directed donation, help in increasing awareness and community
support of organ donation. Along with transplant recipients, living
donors can be persuasive advocates for organ donation.
4. Proximity
of transplantation programs may encourage organ donation. While
some hospital staff perceive involvement in both organ donation
and transplantation efforts as a potential conflict of interest,
others view proximity to transplant recipients as an opportunity
to heighten the immediacy of need for organ donation, increasing
staff awareness and support of organ donation in the hospital.
IV.
CONCLUSIONS
Site
visits to 6 OPOs and 16 hospitals revealed 7 overarching principles
and 15 best practices and accompanying strategies that appear
to be associated with high organ donation performance. Many of
these principles and best practices are interrelated, and many
of the strategies and examples gleaned from the OPOs and hospitals
support more than one principle or best practice. A noteworthy
example is the OPO practice of providing letters of thanks to
hospital staff following a donation, which is consistent with
principles and best practices concerning recognizing and celebrating
success, providing timely and systematic feedback, maintaining
buy-in, and maintaining a network of interpersonal relationships.
Best practices
can be viewed in the context of a systems approach to organ donation,
as illustrated in Exhibit 6. Some OPOs and hospitals explicitly
manage organ donation using a systems approach. Others implement
various of its components. In this systems approach to organ donation,
goals are set by OPOs and their governing bodies, and discussed
with and adopted by the hospitals in their service areas. These
goals are set with the intention of maximizing organ donation
performance and improving organ donation processes and protocols.
To be successful,
organ donation processes and protocols are implemented both within
and outside of the hospital setting by champions from among OPO
staff, hospital staff, and others, such as medical examiners,
EMS staff, and donor families. These processes and protocols span
hospital development activities, family support and bereavement
care, clinical support of potential donors, and follow-up.
Hospital development
focuses on building and strengthening the relationships between
OPO and hospital staff. Family support and bereavement care are
continuous, and focused on helping families by offering them emotional
support, information, and resources needed to deal with these
tragic situations. Processes and protocols related to the clinical
support of potential donors include identification of potential
donors, donor referrals, determination of medical suitability,
obtaining consent, stabilization of donors, locating recipients,
organ recovery and preservation, and, finally, transplantation.
Follow-up processes include those related to OPO-hospital staff
case debriefs, OPO follow-up with hospital staff regarding transplant
recipients, and OPO and hospital follow-up with donor families.
Finally, OPOs
and hospitals generate outcome data as a result of the implementation
of these processes. Data are monitored and analyzed within the
OPO and hospital settings to determine how well processes were
implemented and whether goals were achieved. Results of data analysis
continuously inform the organ donation process so that improvements
can be made over time and organ donation goals can be modified
accordingly.
APPENDICES
Appendix
A: Expert Panelists
The following
20 participants attended a meeting in June 2001, sponsored by
HHS/HRSA/OSP/DoT, to examine potential structural and process
attributes of OPOs and hospitals that are associated with higher
rates of donation.
Teresa Beigay
Doctoral Student
Health Policy and Management
University of Pittsburgh
Pittsburgh, PA
Howard Degenholtz,
Ph.D.
Assistant Professor
University of Pittsburgh
Center for Bioethics and Health Law
Pittsburgh, PA
Francis L.
Delmonico, M.D.
Professor of Surgery
Amer. Society Of Transplantation (AST)
Harvard Med. Sch., Dir, Renal Transp., Mass. Gen. Hosp.
Boston, MA
Beth Fetter
Manager, Organ Procurement
Translife
Orlando, FL
Mary Ganikos
Chief, Education Branch
HRSA/DoT
Rockville, MD
Julie Gassaway,
RN, MSN
Project Director
Inst. for Clinical Outcomes Resrch.
Severna Park, MD
Pat Giordano
Executive Director
Texas Organ Sharing Alliance
San Antonio, TX
David Howard,
Ph.D.
Assistant Professor of Health Economics
Depart.of Hlth Policy & Mgmt., Rollins Sch. of Public Hlth
Emory University
Atlanta, GA
Dixon Kaufman,
M.D.
Amer, Soc. Of Transplant Surgeons (ASTS)
Northwestern Univ. Div. of Transp.
Chicago, IL
Gene Knott,
Ph.D.
University of Rhode Island
Peacedale, RI
Ellen Kulik
National Donor Family Council
Skaneateles, NY
Kathleen Lohr,
Ph.D.
Chief Scientist
Statistics, Health, & Social Policy Unit, Research Triangle
Inst.
Research Triangle Park, NC
Virginia McBride
Education Branch
HRSA/DoT
Rockville, MD
Karl McCleary,
Ph.D.
Assisant Professor of Health
Policy and Administration
The Pennsylvania State University
University Park, PA
Martha McKinney,
Ph.D.
Community Health Solutions, Inc.
Richmond, KY
Robert Metzger,
M.D.
Council on Organ Availability
TransLife
Orlando, FL
Patrice Miles
Executive Director
National Minority Organ and Tissue
Transplant Education Program
Washington, DC
Richard Millspaugh
Chaplain
Boone Hospital Center
Columbia, MO
Esther Padilla
California Transplant Donor Network
Fresno, CA
Sheldon Zink,
Ph.D.
Director of the Program for Transplant Policy and Ethics
Senior Fellow
Center for Bioethics
University of Pennsylvania
Philadelphia, PA
Appendix
B: OPOs Considered for Inclusion in the Study
Fourteen
OPOs were considered for inclusion in the study (see below). These
OPOs had among the highest consent rates and median consents rates
that were greater than the national mean (i.e., consent rates
greater than 50 percent). The final sample of 6 OPOs was selected
from this list of 14 based on volume of cases, geographic variation,
and other unique characteristics (e.g., hospital-based OPO, in-house
coordinator staffing model).
WISE
Wisconsin Donor Network
Milwaukee,WI
WIUW
University of Wisconsin Hospital & Clinics Organ Procurement
Organization
Madison, WI
CADN
California Transplant Donor Network
Oakland, CA
FLWC
LifeLink of Florida
Tampa, FL
MWOB
Midwest Transplant Network
Westwood,KS
TXGC
LifeGift Organ Donation Center
Houston, TX
CORS
Donor Alliance Inc.
Denver, CO
IAOP
Iowa
Donor Network
Iowa City, IA
MIOP
Transplantation Society of Michigan, now Gift of Life Michigan
Ann Arbor, MI
CAOP
OneLegacy
Los Angeles, CA
MAOB
New England Organ Bank
Newton, MA
FLFH
TransLife /Florida Hospital
Orlando, FL
MNOP
LifeSource Upper Midwest Organ Procurement Organization
St. Paul, MN
MOMA
Mid-America Transplant Services
St. Louis, MO
Appendix
C: Hospital Sample and Characteristics
Site visits were made to the following hospitals, listed
by the OPO with which they are affiliated:
- New England
Organ Bank (Newton, MA)
- Beth
Israel Deaconess Hospital (Boston)
- Boston
Medical Center (Boston)
- Brigham
Women's Hospital (Boston)
- Massachusetts
General Hospital (Boston)
- LifeLink
of Florida (Tampa, FL)
- Lakeland
Regional Medical Center (Lakeland)
- Tampa
General Hospital (Tampa)
- University
of Wisconsin Hospital & Clinics Organ Procurement Organization
(Madison, WI)
- Gundersen
Lutheran Hospital (Lacrosse)
- Theda
Clark Regional Medical Center (Neenah)
- University
of Wisconsin Hospital & Clinics (Madison)
- Mid-America
Transplant Services (St. Louis, MO)
- Barnes-Jewish
Hospital (St. Louis)
- St.
John’s Mercy Medical Center (St. Louis)
- LifeGift
Organ Donation Center (Houston, TX)
- Ben
Taub General Hospital (Houston)
- Memorial
Herman Hospital (Houston)
- Donor Alliance
(Denver, CO)
- Denver
Health Medical Center (Denver)
- Memorial
Hospital (Colorado Springs)
- St.
Anthony Central Hospital (Denver)
Tables
C1 – C5 that follow present characteristics of each hospital
in the sample.
Hospital Characteristics |
Hospital
#1 |
Hospital
#2 |
Hospital
#3 |
Hospital
4 |
Geographic
Setting |
Urban |
Urban |
Urban |
Urban |
Trauma
Designation |
Level
1 |
Level
1 |
Level
1 |
Level
1 |
Hospital
Type/Control |
Non-profit,
private |
Non-profit,
private |
Non-profit,
private |
Non-profit,
public |
Teaching
Status |
Yes |
Yes |
Yes |
Yes |
University
Affiliation |
Yes |
Yes |
Yes |
Yes |
Presence
of Transplant Center |
Yes |
Yes |
Yes |
Yes |
Number
of Inpatient Beds |
526 |
709 |
868 |
464 |
Number
of ICU Beds |
58 |
38 |
66 |
46 |
Selected Organ Donation Performance Measures |
Consents
/ Eligibles Rate 2002 |
78.6% |
72.2% |
61.5% |
54.2% |
Donors
/ Eligibles Rate 2002 |
71.4% |
66.7% |
46.2% |
54.2% |
Appendix
Table C-2: Selected LifeLink Hospital Characteristics
Hospital Characteristics |
Hospital
#1 |
Hospital
#2 |
Geographic Setting |
Urban
|
Suburban
|
Trauma Designation |
Level
1 |
Level
2 |
Hospital Type/Control |
Non-profit,
public |
Non-profit,
public |
Teaching Status |
No
|
No |
University Affiliation |
Yes |
Yes
|
Presence of Transplant Center |
Yes |
No |
Number of Inpatient Beds |
877 |
634 |
Number of ICU Beds |
57 |
34 |
Selected Organ Donation Performance Measures |
Consents
/ Eligibles Rate 2002 |
91.9% |
55.6% |
Donors
/ Eligibles Rate 2002 |
78.4% |
55.6% |
Appendix
Table C-3: Selected UWHC Hospital Characteristics
Hospital Characteristics |
Hospital #1 |
Hospital
#2 |
Hospital
#3 |
Geographic
Setting |
Urban |
|
|
Trauma
Designation |
Level 1 |
Level 2 |
Level 2 |
Hospital
Type |
Private, Not-for-Profit |
Private, Not-for-Profit |
Private, Not-for Profit |
Teaching
Status |
Yes |
No |
Yes |
University
Affiliation |
Yes |
No |
Yes |
Presence
of Transplant Center |
Yes |
No |
No |
Number
of Inpatient Beds |
471 |
150 |
264 |
Number
of ICU Beds |
|
15 |
15 |
Selected
Organ Donation Performance Measures |
Consents / Eligibles Rate 2002 |
100.0% |
100.0% |
92.3% |
Donors / Eligibles Rate 2002 |
81.3% |
85.7% |
84.6% |
Appendix
Table C-4: Selected MTS Hospital Characteristics
Hospital Characteristics |
Hospital
#1 |
Hospital
#2 |
Geographic Setting |
Urban |
|
Trauma Designation |
Level
2 |
Level
1 |
Hospital Type |
Private,
Not-for-Profit |
Private,
Not-for-Profit |
Teaching Status |
No |
Yes |
University Affiliation |
No |
Yes |
Presence of Transplant Center |
No |
Yes |
Number of Inpatient Beds |
886 |
898 |
Number of ICU Beds |
|
112 |
Selected Organ Donation Performance Measures |
Consents/Eligibles
Rate 2002 |
60.0% |
75.0% |
Donors/Eligibles
Rate 2002 |
60.0% |
68.8% |
Appendix
Table C-5: Selected LifeGift Hospital Characteristics
Hospital Characteristics |
Hospital
#1 |
Hospital #2 |
Geographic Setting |
Urban
|
Urban |
Trauma Designation |
Level
1 |
Level 1 |
Hospital Type |
Non-profit,
private |
Non-profit, public |
Teaching Status |
No
|
Yes |
University Affiliation |
Yes |
Yes |
Presence of Transplant Center |
Yes |
No |
Number of Inpatient Beds |
648 |
632 |
Number of ICU Beds |
145 |
75 |
Selected
Organ Donation Performance Measures |
Consents/Eligibles
Rate 2002 |
85.7% |
82.1% |
Donors/Eligibles Rate 2002 |
81.8% |
76.9% |
Appendix
Table C-6: Selected Donor Alliance Hospital Characteristics
Hospital Characteristics |
Hospital
#1 |
Hospital
#2 |
Hospital
#3 |
Geographic Setting |
Urban |
|
|
Trauma Designation |
Level
2 |
Level
1 |
Level
1 |
Hospital Type |
Non-profit,
public |
Non-profit,
public, church-operated |
Non-profit,
public |
Teaching Status |
No |
No |
Yes |
University Affiliation |
No |
No |
Yes |
Presence of Transplant Center |
No |
No |
No |
Number of Inpatient Beds |
467 |
365 |
289 |
Number of ICU Beds |
|
60 |
53 |
Selected Organ Donation Performance Measures |
Consents
/ Eligibles Rate 2002 |
84.6% |
84.2% |
64.3% |
Donors
/ Eligibles Rate 2002 |
61.5% |
52.6% |
57.1% |
Acknowledgements
This
report was prepared for the Health Resources and Services Administration,
U.S. Department of Health and Human Services, by Clifford Goodman,
Christina Worrall, Umi Chong, Sophie Kallinis, and Margaret Rockwood
of The Lewin Group. The Project Officer was Virginia McBride of
the U.S. Department of Health and Human Services’ Health
Resources and Services Administration (HRSA), Office of Special
Programs (OSP), Division of Transplantation (DoT). Frank Zampiello
of Quality Reality Checks accompanied The Lewin Group in the data
collection that informed this report. Other HRSA contributors
include: Secretary Tommy G. Thompson and staff of HRSA/OSP/DoT,
including Joyce Somsak, Dennis Wagner, Rich Durbin, Mary Ganikos,
and Lorah Tidwell. The following OPOs and their affiliated hospitals
were included in the study:
- New England
Organ Bank (Newton, MA) and: Beth Israel Deaconess Hospital,
Boston Medical Center, Brigham Women's Hospital, Massachusetts
General Hospital (all Boston)
- LifeLink
of Florida (Tampa, FL) and: Lakeland Regional Medical Center
(Lakeland), Tampa General Hospital (Tampa)
- University
of Wisconsin Hospital & Clinics Organ Procurement Organization
(Madison, WI) and: Gundersen Lutheran Hospital (Lacrosse), Theda
Clark Regional Medical Center (Neenah), University of Wisconsin
Hospital & Clinics (Madison)
- Mid-America
Transplant Services (St. Louis, MO) and: Barnes-Jewish Hospital
(St. Louis), St. John’s Mercy Medical Center (St. Louis)
- LifeGift
Organ Donation Center (Houston, TX) and: Ben Taub General Hospital
(Houston), Memorial Herman Hospital (Houston)
- Donor Alliance
(Denver, CO) and: Denver Health Medical Center (Denver), Memorial
Hospital (Colorado Springs), St. Anthony Central Hospital (Denver)
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