There is something near-miraculous about the organ donation system, which allows tens of thousands of Americans a year to give up parts of their body they no longer need to extend the lives of others.
And yet tens of thousands of viable organs are also lost each year rather than going to patients desperately in need of them. Researchers recently estimated there are only half as many donors as there are deaths with potential to donate.
Given how life-changing an organ transplant can be, and the scale of demand, how could we ensure that every potential donation finds its way to a recipient?
We tend to focus on the surgeon as the key figure in the equation. But as it turns out, the success of organ donation hinges just as much on other links in the chain.
If we supported the entire organ transplant system and held it to better account, we would ensure that more organs from the dying could become a gift of life for someone else.
Here’s how that might work.
There’s an urgent need to increase the number of organ transplants
2017 was a record year for organ donation and transplantation, as the number of deceased people whose organs were recovered for donation surpassed 10,000 for the first time. Those donations, combined with organs offered by nearly 6,000 living people, together meant that 35,000 desperately ill people got lifesaving transplants. But that same year, more than 50,000 people were added to the waitlist.
Of those people currently on the US transplant waitlist, 81 percent need a kidney, 12 percent need a liver, and the rest need a heart, lung, pancreas, or intestine. They suffer from conditions as varied as diabetes, alcohol abuse, or hepatitis C, but what they have in common is that one of their vital organs is irreversibly failing.
As organs become available for transplant, they are matched with the sickest nearby patient with whom they are compatible, following a complex protocol that takes physiological and geographic factors into account. To reach the front of the line, patients may have to wait until their illness is very advanced, and, as a result, undergo surgery when they are least able to physically tolerate it.
Transplant centers control which patients are added to the list; they can be conservative in putting forward only those who they believe will benefit. Dr. Seth Karp, director of the Vanderbilt University Transplant Center, estimates that only one in 10 patients who die of liver disease in Tennessee was even on the waiting list for a liver.
But organ donation after death is still the exception, not the rule
The supply of organs, in turn, is largely handled by a network of nonprofits that work in hospitals but possess skills that clinicians have little opportunity to practice — because within the health system, organ donation is actually fairly uncommon.
Organ procurement organizations (OPO), as they are known, oversee all the hospitals in one of 58 donor service areas (DSAs) across the country. When a hospital flags a patient with potential to donate, the OPO dispatches a staff member to the bedside. They and their colleagues serve as a liaison between all the parties involved — the donor hospital, the transplant center, the mourning family — and must perform the alchemy of turning one person’s loss into another’s reprieve.
Howard Nathan began working at the Pennsylvania-based OPO Gift of Life in 1978, as a transplant coordinator. Today he is the organization’s president. Their essential responsibility, as he sees it, is to represent the people on the waitlist: “They don’t have a voice at the bedside of the donor. We’re their voice.”
The OPO’s work is a balance of sensitivity and speed. They have difficult conversations with patients’ families on what may be their darkest day. Once the patient dies and blood ceases circulating oxygen, every passing moment means the organs are further compromised, reducing the likelihood of a successful transplant, so the OPO coordinates and carefully manages their swift transportation to whichever transplant centers are ready to make use of them.
As medicine has evolved, so has organ donation
Part of the challenge is that organ procurement must evolve in step with changes in how we treat illness, and how we die.
Historically, transplant surgeons were reluctant to accept organs from older patients or organs that had to be transported from a great distance, which left them depleted of oxygen. They favored donations from younger people who had suffered a traumatic injury or illness resulting in irreversible loss of brain function (known as “brain death”) but whose circulation had been maintained by life support. This preserved oxygen flow to the organs, creating a window of time for matching them to a recipient.
With advances in post-transplant care, surgeons are increasingly able to transplant organs previously considered marginal. Those include donations from older patients, organs transported over longer distances, and after deaths where the patient’s heart stopped. These donations after cardiac death present additional challenges because the clock starts ticking immediately upon death, leaving less time for the transplant. But cardiac deaths are nearly as numerous as brain deaths, so they hold potential to double the number of deceased organ donors.
Drawing on four years of data on deaths across the country, researchers calculated there are more than 24,000 deaths with potential to donate each year, more than double the number of actual donors in 2017. The researchers found that among people who died at age 39 or younger, 60 percent became donors, but of those ages 40 to 59, only 30 percent did, and just 11 percent of those ages 60 to 75. Of qualifying cardiac deaths, only one-fifth became donors.
“These data highlight the large number of unrealized donors under our current system of organ donation and transplantation,” wrote one of the study’s authors, Dr. David Goldberg at the University of Pennsylvania, in an email. “Efforts to standardize OPO practices are needed, especially among OPOs with the lowest donation rates.”
When OPOs focus on finding more donations after cardiac death and expanded donor criteria, it can yield major returns. When Jeff Orlowski took over the OPO LifeShare of Oklahoma in 2012, they were focusing on a few major referral hospitals because that was where trauma patients went.
Under his leadership, the organization reallocated personnel to better serve all 145 hospitals in their area. And where they had been facilitating 80 to 100 donations a year, their total nearly doubled to 183 in 2017.
The “three-legged stool”
Invariably, the organ donation system’s performance reflects some factors that can’t be easily attributed to any one entity so much as to the delicate collaboration between them. “The DSA is like a three-legged stool,” says donation expert Teresa Shafer, referring to the hospital caring for the dying patient, the organ procurement organization soliciting the donation, and the transplant center that will use it. Success, she explains, requires that “the OPO, the transplant center, and the donor hospital are firing on all cylinders.”
One place where they haven’t been is New York City, which has the lowest rate of donation in the country. Between 2004 and 2014, organ donations there fell by 10 percent even as they increased by 20 percent nationwide.
The local OPO, LiveOnNY, was slow to develop a practice of soliciting donors after cardiac death. And local hospitals were disengaged. Dana Lustbader, who has worked in New York on both the OPO and hospital side, recalls that during her medical training in Wisconsin, organ donation was integrated into the curriculum and this was reflected in its prominence in medical practice there. “A brain-dead donor was managed as aggressively as a living person who had pneumonia on a ventilator. They were both aggressively managed and equally important,” she said. “Here in New York, it’s a different culture.”
LiveOnNY is renewing efforts to build a culture of donation, recently co-hosting a summit with the Greater New York Hospital Association and initiating projects in half a dozen hospitals to test better approaches. But it’s not the only locale that could benefit. Shafer has called for a similar convening of hospitals and OPOs nationwide, like one a decade ago that substantially boosted donation rates.
Donations from the living have stagnated, and there’s an opportunity to boost them too
Another way to increase organ transplants is to look beyond the dead. While most transplanted organs in the US are donated by the dying, about 40 percent of kidney transplants and 4 percent of liver transplants are from living donors.
A healthy individual with two kidneys can part with one kidney, as they can with a portion of their liver, though with a higher degree of risk. Last year Vox’s own Dylan Matthews gave a kidney to a stranger in what is called a nondirected donation, inspiring his colleague German Lopez to do the same in March. (Such procedures are rare, though — only one in 30 living kidney donations is nondirected. The vast majority of donors are someone known to the patient.)
From the recipient’s perspective, a living donor is preferable because the donated organ typically functions better. Also, because living donations are arranged outside of the deceased donor system, recipients needn’t wait until deteriorating health moves them to the front of the waitlist, so they are typically in better condition to endure surgery.
Dr. Dorry Segev, a professor of surgery at Johns Hopkins School of Medicine, says increased rates of living kidney donation could help meet the country’s needs. “In my opinion, there are enough healthy people in the United States to easily alleviate the shortage,” he wrote in an email. But while the number of living kidney donations tripled between 1990 and 2004, it has since stagnated.
Efforts to turn this around have focused on making it easier for sick patients to seek out potential donors. After observing that patients are often reluctant to solicit a kidney donation themselves, Segev and a team of researchers created a program for training a “champion” among a patient’s peers to ask on their behalf. They also developed a smartphone app that allows patients to post about their need to social media, significantly increasing the likelihood a donor will come forward.
“We don’t use bad livers. We use good livers with bad stories.”
Once the family of a deceased (or living) donor agrees to move ahead with donation, a transplant might seem sure to follow. But there are further hurdles. For an OPO to make good on the promise of a donation, it needs a transplant center to accept and use it. And researchers have shown that some transplant centers are much less likely to accept organs than others.
This is partly a predictable consequence of the way transplant centers are regulated. The Centers for Medicare and Medicaid Services evaluate them in large part on the share of patients that undergo a successful transplant and survive at least one year. These measures are appealing on their face but do not reflect the outcomes for patients whose transplants the centers forgo. It’s as if in baseball, batters faced no penalty for letting pitches go by, whether in the strike zone or not: batters might be less likely to swing and miss, but they’d also waste many more good pitches.
Some transplant centers are defying these incentives. George Loss, the chief of transplant surgery at the Ochsner Clinic in Louisiana, has embraced a different paradigm for the clinic’s liver transplant practice. By considering donors typically thought of as “marginal,” Ochsner gains access to livers that other centers have declined, effectively expanding its supply. This allows a higher volume of transplants, and its patients get to the front of the line more quickly while they are healthier and better able to tolerate a less than ideal organ.
The criteria by which surgeons judge organs are somewhat subjective, and this may be part of the problem. Facing the decision of whether to accept an organ under a narrow time constraint, a prominent risk factor — say, if the patient was obese or had a history of alcohol abuse — may be enough to dissuade a surgeon from moving forward. In contrast, Loss says at Ochsner they thoroughly scrutinize all offered organs, examining scans and other evidence themselves rather than relying on secondhand reports. “We don’t use bad livers. We use good livers with bad stories.”
Other centers have embraced a similar philosophy. Loss thinks the shift could be accelerated if clinicians formed an advisory group that transplant surgeons could consult when making these tough calls.
New technology may help doctors use more marginal organs too. A randomized trial published in Nature this month found that livers donated after cardiac death that were preserved using a novel device were significantly less likely to be discarded for appearing too marginal — and yielded equivalent or improved survival for their recipients — than livers donated after brain death and stored using conventional methods.
States like New York are trying to foster a new culture of organ donation
The biggest predictor of whether a person will donate an organ is whether they previously registered as an organ donor. Should their family raise objections, the OPO will not necessarily override them, but authorized donors end up donating more than 90 percent of the time. The share of the population on a registry varies enormously across the US, from Washington, Montana, and Alaska, states where it exceeds 85 percent, to New York, where fewer than 30 percent of residents are registered.
Cultural mores vary across the country, but experts say state governments can take steps to make it easier to donate. Every state now has a digital portal for authorizing donation, but some do more to integrate it into other processes residents will encounter.
After years of delay, in 2017 New York launched a modern online registry and now offers people using the state’s health insurance marketplace the chance to join. Since 2017, more than 147,000 people have used it to enroll, according to health department data. Gov. Andrew Cuomo also signed a law allowing 16- and 17-year-olds to register as donors.
States can also engage and educate community directly. Public service announcements promoting organ donation now festoon subway cars and kiosks around New York City.
To increase the availability of organ transplants, advances in technology and greater investment can’t hurt, but the real success will come from getting doctors to work better together, asking dying patients hard questions in the best possible way, and making a more honest assessment of risks and returns.
These advances aren’t easily billed, and our medical system is not adept at promoting them. But achieving them has the potential to extend tens of thousands of lives.
Ted Alcorn is a researcher and writer in New York. Find him on Twitter at @tedalcorn.
Correction: A previous version of this story stated that OPO LifeShare of Oklahoma’s total number of donations in 2017 was 159. In fact, it was 183.