Critical shortage

The media-fueled saga of 10-year-old cystic fibrosis patient Sarah Murnaghan ended happily last week for her and her family. But the successful legal and publicity campaign that allowed her to leap to the front of the waiting list for a life-saving lung transplant highlights the underlying dilemma: Despite a decade of efforts to lift the nation's donation rate, there still aren't enough organs for the more than 118,000 people awaiting transplants.

Hospitals remain the major source of donated organs, which are retrieved after obtaining family consent from brain-dead trauma victims and other patients with zero prospects for survival. In addition, a national campaign begun a decade ago by HHS and involving federally designated organ procurement organizations and hospitals succeeded in raising the number of pre-designated organ donors, usually identified on a person's driver's license, to more than 41% of U.S. adults.

The campaign doubled the number of actual donors and lifted the yield from dying patients from slightly more than 50% to about 76% during the past 10 years, according to the United Network for Organ Sharing, a Richmond, Va.-based advocacy group that has operated the Organ Procurement and Transplantation Network since 1986 under a federal contract with HHS.

But after an initial burst of enthusiasm, progress has stalled at the nation's 800 hospitals with the largest organ-donor potential, and some advocates say healthcare administrators aren't doing enough. Hospitals “should have a bigger role in promoting organ and tissue donation,” said David Bosch, director of communications for Gift of Hope, an organ procurement organization serving Illinois and northwest Indiana. “The reality is we need hospitals and we need them to identify potential donors. We need them to call us in a timely fashion. We need them to help us take care of families from the beginning.”

However, hospital officials say the real problem lies in the fundamental mismatch: There is a growing crowd of people waiting for organ transplants, and they vastly outweigh the number of potential organ donors each year. “It's a zero-sum game,” said Dr. J. Michael Millis, medical director of transplantation services at University of Chicago Medicine. “We don't have enough organs.”

Improving medical technology is lengthening the queue of patients eligible for transplant. The invention of dialysis machines in the 1970s substantially increased the number of people who qualified for kidney transplants. Today, more than 80% of people on transplant waiting lists are looking for kidneys.

Improved transplant techniques and the development of better immune-suppression drugs that prevent rejection have also lengthened lines and improved the prospects of patients awaiting liver, lung and heart transplants. Roughly 1,650 people are waiting for lung transplants, for instance, including about 30 children like Murnaghan. Before her case, children were put at the end of the list for receiving donated adult lungs.

In the late 1990s, HHS ordered hospitals to step up their efforts to encourage the families of dying patients to consent to becoming organ donors. But the move backfired, advocates say, because most hospital staff treated the mandate like another consent form without giving soon-to-be grieving families the careful counseling and information needed to turn them into willing donors.

“Families want to know that the bodies won't be mutilated; that the organs won't sit on the shelf; that there are recipients already waiting,” said Lisa Stocks, executive director of LifeSharing, the designated San Diego-area organ procurement organization (OPO), one of 58 across the country. “Families also want to know if their religion allows donation.”

The uproar led to the creation in 2003 of the U.S. Organ Donation Breakthrough Collaborative, which identified hospitals with the largest organ-donor potential and developed a hand-off program where trained counselors working for the OPOs would be called in whenever a potential donor situation arose in the hospital. “The best donor hospitals integrate organ donation into end-of-life care and family care,” said Thomas Mone, the chief executive officer of OneLegacy, the largest OPO in the nation, which covers the greater Los Angeles area. “It comes from giving families the opportunity to have something good come from their loss.”

Mone, who previously served as CEO of San Gabriel (Calif.) Valley Medical Center, said the No. 1 barrier faced by OPOs is lack of a timely referral from hospitals. “It only works well where the OPO has a working relationship with the hospital staff to make sure we're all on the same page … so the family has the greatest amount of time to come to terms with the issue,” he said. “It has to be in the days or hours before a brain death declaration.”

It can be a delicate dance, however, for hospital officials trying to balance appropriate end-of-life care and the physical requirements for successful organ transplantation. Brain-dead people with organs slated for removal need to be sustained during the last hours of life with appropriate hydration, nourishment and blood pressure or the organ can be ruined. Maintaining organ function can send a mixed signal to families who just consented to organ donation and removal of life support.

“There's every good reason to avoid futile interventions on someone who isn't going to recover,” Mone said. “Yet when you do that with a potential organ donor, you have to … make every effort to maintain organ function.”

Mone puts the number of hospitals with solid policies at about the same level as the “yield” rate: a little over two-thirds of all hospitals. “You still have a third of hospitals that are challenged,” he said. “For some, it may not be as frequent so they don't get the experience in how to handle families. Sometimes, there is an individual in a key position (at the hospital) who simply isn't comfortable with it.”

Hospitals with high donor rates tend to share many of the same best practices, said Teresa Shafer, executive vice president and chief operating officer for LifeGift, an organ procurement organization in Texas. They also usually have senior leaders who are active supporters of organ donation.

Best practices include close collaboration between hospital clinicians and the OPO staff, including early referrals; approaching families at the right time; and allowing OPO staff to spend enough time with families to encourage donation. “When your process is poor, you don't give the family the best opportunity to say yes,” Shafer said.

However, an increasing number of hospital associations and individual hospitals, including those that do not have transplant centers, have started to promote organ donation to their staff and communities. And, like the collaborative, some campaigns have produced significant results.

But it is becoming clear that getting more people to sign up isn't going to get the job done. Health factors will drive more people onto waiting lines for organs, particularly given the rising incidence of obesity-driven diabetes and high blood pressure, which are the two main causes of end-stage kidney failure.

And then there's the aging of the baby boomer generation, which is likely to increase demand for life-extending organs just as it has generated new demand for function-preserving knees, hips and cardiovascular implants. Of course, most won't have the resources of Apple co-founder Steve Jobs, who received a liver transplant in Tennessee in 2009 by signing up for the transplant in the state that his research showed had the shortest waiting list.

Since transplantation must occur within hours of the organ being removed from the donor's body, most people must rely on OPOs within their own states to find suitable donors. They don't have the option of signing up in a distant state and flying off in a personal jet at a moment's notice.

And those kinds of ethical dilemmas are certain to increase unless hospitals and OPOs come up with a more effective method of generating donor organs from soon-to-die patients. While the Sarah Murnaghan situation is somewhat unique—lung allocation policies are the only ones to use age ranges—physicians and healthcare executives say it may lead to more legal challenges that could put the medical community at odds with families.

A lawsuit filed on her behalf challenged a federal policy that placed children younger than 12 years old at the end of the adult waiting list rather than by the severity of their conditions. A judge intervened. The policy was temporarily revised. Less than a week later, Sarah received a lung from an adult donor.

“We are elated this day has come, but we also know our good news is another family's tragedy,” her mother posted to a Facebook page. “That family made the decision to give Sarah the gift of life—and they are the true heroes today.”

More broadly, the case raises a number of ethical questions about circumventing the nation's organ-allocation system and serves as a reminder of the ongoing shortages of organs suitable for transplantation despite government and private-sector efforts to boost organ donations. “It's almost inevitable that it will raise questions in the minds of 100,000 people who are on waiting lists for organs,” said Robert Veatch, professor of medical ethics at Georgetown University's Kennedy Institute of Ethics. “Anyone can muster a set of arguments about why their case is special and deserves priority.”

Follow Jaimy Lee on Twitter: @MHjlee