In life’s end lies the possibility of renewed life. This hopeful philosophy underlies many people’s decisions to designate themselves, or their loved ones, as organ donors.
Unfortunately, the reality of organ donation in the United States doesn’t yet match the need or the expectation. There are more than 87,000 people on transplant waiting lists, 17 of whom die on average each day; fewer than 50 percent of designated organ donors actually end up donating.
But thanks to a nationwide Organ Donation Collaborative
launched in April 2003 by former US Secretary of Health and Human Services Tommy Thompson, and modeled on IHI’s Breakthrough Series Collaborative model
, that picture is changing. By January 2005, organ donation had increased by more than 16 percent among hospitals in the government-run Collaborative. This is unprecedented improvement, following decades of flat or barely increasing donation rates nationwide. Nearly 1,400 additional patients received life-saving transplants in 2004 as a result of the dramatic rise in donations.
Using methodology proven to help improve care in a wide range of areas, the Organ Donation Collaborative has begun to promote positive change in an area of health care that has often been viewed as a medical, legal, ethical, and emotional minefield.
Dennis Wagner, MPA, who works in the Division of Transplantation at the US Health Resources and Services Administration (HRSA) in Rockville, Maryland, directs the Collaborative. “We knew about IHI’s Collaborative methodology for creating change, and recognized that we could apply it to the national organ donation system. It is a model that seems tailor-made for this situation,” says Wagner.
The need for an Organ Donation Collaborative had become clear in the year leading up to its launch, says Wagner, because for the first time HRSA had produced nationwide data showing tremendous variation in donor conversion rates — the percentage of potential donors who actually donate. “Some of the biggest hospitals in the country were at zero percent. Others were at 90 percent. We realized that the variation was huge, and we could learn from the places with high rates.”
Wagner and his HRSA colleagues Jade Perdue, MPA, Renee Dupee, JD, and Ginny McBride, RN, MPH, CPTC, knew they faced a challenge most Collaborative leaders don’t. While IHI Collaboratives are designed to promote a “change package” — a collection of steps known to improve care — HRSA’s first Organ Donation Collaborative was organized before its leaders knew how to solve the problems they were facing. “We didn’t have the knowledge base, but we were confident that we could figure it out and mount an effective Collaborative,” says Perdue.
Wagner says they gained that confidence by working closely with their IHI coaches, and through IHI President and CEO Donald Berwick’s personal involvement and encouragement. “Don felt sure we could do this, and that boosted our confidence immensely,” says Wagner.
Strengthening a Delicate Partnership
The organ donation system in the US is dependent on a delicate relationship among hospitals, Organ Procurement Organizations (OPOs), and families of gravely ill patients. Each of the 58 OPOs in the US is designated by the federal government to coordinate organ procurement for a specific region, including evaluation of potential donors, meeting and discussing donation options with family members, arranging for surgical removal of donated organs, preserving organs, and arranging for their distribution according to national guidelines.
From the data they had gathered, Wagner and his colleagues knew that the greatest potential for increasing the donor conversion rate lay in working with a specific subset of the nation’s hospitals: large urban hospitals with busy trauma centers. About 50 percent of eligible donors were concentrated in these 223 hospitals across the nation.
The leaders then commissioned a study of “best practices” at six OPOs and 16 affiliated hospitals with high donor conversion rates. From site visits and extensive interviews with nearly 300 hospital and OPO staff, Wagner says he and his colleagues learned that there is no single recipe for success. Rather, they discovered a set of shared strategies on which they based the HRSA Collaborative’s change package:
- Unrelenting focus on change, improvement, and results
- Rapid, early referral and linkage
- Integrated donation process management
- Aggressive pursuit of every donation opportunit
In September 2003, more than 500 participants came together in Washington, DC, for the first Learning Session of the Organ Donation Collaborative. Working together in 49 teams, the participants represented 95 of the nation’s 200 largest, mostly urban hospitals, and 44 procurement organizations.
The Collaborative’s goals were ambitious:
- 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
- Help save lives of thousands of people each year and prevent up to 17 deaths per day
Success at Henry Ford
Henry Ford Hospital (HFH) is a 903-bed tertiary care hospital located in the heart of Detroit, Michigan. One on the region’s busiest trauma centers, HFH is nationally known for its multi-organ transplantation center. But that doesn’t mean the hospital was doing a good job at identifying organ donors or turning consent into actual donation.
So along with its regional OPO, Gift of Life Michigan (GLM), Henry Ford Hospital joined the first HRSA Organ Donation Collaborative. Eric Scott, RN, BSN, was then serving as GLM’s organ donation coordinator, working on-site at HFH. The conversion rate at HFH was about 20 percent.
Today, that rate is well above the 75 percent goal set for Collaborative participants. Scott, who now works as HFH’s quality assurance coordinator for transplants, a newly created position, says getting from a 20 percent donor conversion rate to a high so far of 81 percent required new structures and processes, and strengthening and supporting the one element that connects them all: relationships.
“Relationships are key,” says Scott. His nursing background made him a natural to begin talking with and educating nurses in the emergency department and the intensive care units, he says. “When I worked in the Emergency Room or the ICU, I had no idea about organ donation or transplantation. A lot of this work involves basic education about our goals.”
The HFH organ donation team used the strategies and the specific change concepts they learned through the Collaborative to create five important changes in their organ donation process.
First, to increase the number of referrals, the team changed the clinical triggers for referrals to make them far more inclusive and specific. “The criteria to help providers identify and refer potential donors to the OPO were pretty vague,” says Scott. “We did some PDSAs [Plan-Do-Study-Act cycles
] and re-wrote the guidelines so that every possible donor gets considered. It is then up to the OPO to evaluate the patient and, if appropriate, make the request.”
OPO staff members are specially trained, less involved with the family and patient than physicians or nurses, and therefore less likely to be perceived as having a conflict of interest. Making this “hand-off” process clearer to staff resulted in an immediate increase in referrals.
The hospital also worked to speed up its monthly or bi-monthly death record reviews, so that missed opportunities for referrals could be spotted quickly and changes implemented accordingly. Third, all donation events are now reviewed, whether or not consent was given, to learn more about what works.
Fourth, the team identified several high-level champions for organ donation, including prominent surgeons, other physicians, and the transplant administrator. “Having people who could promote this effort, open doors, make phone calls, that was the biggest key to our success,” says Scott.
The fifth change, perhaps the most challenging, was to rewrite the hospital’s Donation after Cardiac Death protocol. This is a delicate area that involves offering donation as an option to those families whose loved ones do not reach brain death, but are in a vegetative state thought to be irreversible. In these cases, some families choose to discontinue life support and the patient’s organs may be donated. When the new protocol was developed and approved, retrospective review showed that the new policy would have enabled the wishes of five or six families during the previous year to have been fulfilled.
Spreading Change Broadly, and One by One
In order to spread improvement techniques more widely throughout the nation’s hospitals and OPOs, HRSA launched a second Collaborative in September 2004. The Learning Sessions of the two Collaboratives intentionally overlap, bringing together more seasoned improvers with newcomers. In addition, communications technology plays a key role.
“We have run the largest Collaborative learning sessions in the world,” says HRSA’s Jade Perdue. “With 136 hospitals participating in the second Collaborative, we added the feature of broadcasting Learning Sessions via satellite to participants throughout the nation.”
“Some of the participating OPOs have formally contracted with non-participating hospitals in their region to participate in the spread initiative,” explains Perdue. “The hospitals gain access to the Learning Sessions by satellite downlink, and they implement the change package.” Perdue says that nearly 50 hospitals are currently participating in the effort through the OPOs with which they work, and more are joining on a rolling basis, working with regional “spread leaders” to get up to speed with the Collaborative.
Yet against the backdrop of this broad effort, organ donation professionals say that their work is also done one by one: one donor, one family, one transplant candidate at a time. Dennis Wagner of HRSA tells the story of one physician whose epiphany is symbolic of this nationwide effort.
“He is a trauma physician,” says Wagner, “and he told me his worst moments are when his work requires him to keep a patient alive who has had a devastating, non-recoverable injury. He said he knows most patients don’t want to live that way. The waste and the emotional turmoil it causes for families have frustrated him. Then he went to our Learning Session and heard a young woman describe what it was like waiting for her new heart, knowing that her fate was completely out of her hands. He realized then that he held some of the cards. Now he says he feels completely different about caring for trauma patients with non-recoverable injuries. He knows that if his patient is a potential organ donor, he can convert that hopeless situation into someone else’s survival.”