“They called me before I was even able to see my brother. . . . I was very unhappy about it,” Francis said. “I ended up saying no.’’
The call came from LiveOnNY, a local nonprofit charged with recovering organs for transplant in the New York region. Amid a nationwide shortage of transplantable organs, industry statistics show that organ procurement organizations like LiveOnNY lose a quarter of their most promising cases because they are unable to secure consent from the families of prospective donors — a loss of about 3,000 donors a year.
LiveOnNY appears to be particularly bad at this part of the job, industry experts say. The group has consistently failed to meet federal performance standards adopted in 2010, records show, and federal officials moved to shut it down in June. LiveOnNY is the first of the nation’s 58 organ procurement organizations, or OPOs, to face such severe sanctions in more than a decade.
LiveOnNY is appealing the decision, and officials at the Centers for Medicare and Medicaid Services, which oversees the nation’s OPOs, declined to comment on the case. But records and interviews show a key problem at the agency is the failure to effectively approach people like Iholt Francis.
LiveOnNY has been short-staffed at critical moments, causing transplant coordinators to show up late or not at all to speak with grieving families, interviews and records show. When they do reach relatives, their approach is sometimes indelicate, causing families to delay signing consent forms or to refuse to sign them altogether.
A 2017 study in the American Journal of Transplantation analyzed communications between nine OPOs and prospective donor families. An East Coast region primarily covered by LiveOnNY received the worst scores.
Sander S. Florman, a transplant surgeon and chairman of LiveOnNY’s board of directors said the OPO is improving but agreed that more changes are needed.
“The bottom line is, we need to do better and save lives,” Florman said.
Complaints from hospital staff about LiveOnNY date to at least 2010, records show, when staff gathered to review a PowerPoint presentation detailing hospital complaints. According to the presentation, which was obtained by The Washington Post, LiveOnNY staff told one doctor they “did not have staff to send’ ” to assess a dying child, a potential pediatric donor. At Long Island Jewish Medical Center, staff complained it took 22 hours for LiveOnNY to arrive and evaluate a 42-year-old stroke victim approaching brain death.
And 20 hours after staff at Mount Sinai Hospital asked LiveOnNY to approach another family, a staff member at the OPO wrote in the case file that “I could speak to the family over the phone” — though the staffer acknowledged that such an impersonal approach was “not ideal.”
Helen Irving, chief executive of LiveOnNY, said the organization has since made “significant progress,” increasing the number of staff who approach families and respond to hospital calls by more than 50 percent. She said response times have dropped from 5.4 hours on average to 3.5 hours, and the number of donors rose from 220 in 2015 to 296 last year.
Still, problems remain. In January, LiveOnNY agreed to allow New York University Langone Health medical staff to assume responsibility for approaching potential donor families in that facility, a pilot project that could have an impact at transplant centers across the country.
“This way, we do not have to wait two or three hours for the [OPO] coordinator to come in,” said Stephen Wall, an emergency medical physician affiliated with the hospital. “With crisis comes opportunity.”
Iholt Francis ultimately agreed to donate his brother’s organs. But after LiveOnNY botched the initial approach, it took three days for Francis to change his mind. By then, precious time had been lost.
His brother’s liver was successfully removed and transplanted. But the OPO ran out of time trying to find a recipient for his heart, one of the scarcest and most precious organs.
LiveOnNY spokesman James Pardes said the case was “complicated” and OPO officials “handled it with great care.”
He acknowledged, however, that it “may have been beneficial” if consent had been obtained earlier.