Hospitals across the United States are throwing away less-than-perfect organs and denying the sickest people lifesaving transplants out of fear that poor surgical outcomes will result in a federal crackdown.
As a result, thousands of patients are losing the chance at surgeries that could significantly prolong their lives, and the altruism of organ donation is being wasted.
“It’s gut-wrenching and mind-boggling,” said Dr. Adel Bozorgzadeh, a transplant surgeon at UMass Memorial Medical Center in Worcester, Mass.
He coauthored a recent study that showed a sharp uptick in the number of people dropped from organ transplant waiting lists since the federal government set transplant standards in 2007. These standards are tied to federal hospital ratings and Medicare funding, which is the main payer for transplants and a key source of income for hospitals. And hospitals’ ability to meet those standards helps determine their reputation within the medical community. Surgeries involving imperfect organs and extremely ill patients are more risky, so hospitals that do many of them run the risk of poor outcomes that may hurt their performance on the standards.
Soon after the study was published in April, the Centers for Medicare and Medicaid Services changed its benchmarks to give hospitals — and surgeries — more leeway to fail. But patients and doctors are still uneasy about the erosion of one of transplantation’s fundamental principles: the sicker you are, the higher you move up the waiting list for donated organs.
“This has been a nightmare, a very expensive nightmare,” said Kathy Barnes, whose husband, James, has been denied a liver transplant by three hospitals, but who is on the waiting list at UMass Memorial.
“Why won’t they do it?” she asked. “It seems like some of them are just looking for an excuse to say no, and I don’t understand that.”
The study by Bozorgzadeh, published by the American College of Surgeons, found that the increasing reluctance to perform transplants on the sickest patients is directly tied to the onset of the standards enforced by CMS. In the first five years after adoption of the standards, more than 4,300 transplant candidates were removed from waiting lists by hospitals. That’s up 86 percent from the 2,311 patients delisted in the five years prior to the regulation.
Bozorgzadeh said the federal regulations are turning transplantation into a numbers game that makes it harder to help patients who deserve a fighting chance.
“If you have young guy who has a 100 percent chance of dying, but only a 30 percent chance of dying with a transplant, you would say, ‘What the hell, give the guy a chance,’” even if the operation might be risky, he said. “But if I make an argument like that, I will be under pressure from all these other stakeholders who would penalize me.”
The number of organs being tossed out has also increased because of concerns that their imperfections could lead to bad outcomes. Last year, 3,159 donated kidneys were discarded, up 20 percent from 2007, according to federal data.
“To me, it just doesn’t make any sense,” said Howard Nathan, chief executive of a Gift of Life Donor Program based in Philadelphia. “We have hundreds of thousands of people on dialysis. And you have these kidneys available that would work … but transplant centers are afraid to use them because they might pull their results down.”
The trend also has a financial impact — not just on the patients, but on American taxpayers.
As federal regulators have noted, it costs the Medicare program more in the long run to keep patients with ailing kidneys on dialysis than to give them organ transplants. Transplant patients also tend to live longer and have a better quality of life.
High-risk doesn’t always mean failure
Sometimes, the calculus that makes a patient risky on paper doesn’t pan out.
Michael Coyle was initially turned down for a liver transplant in 2015. Suffering from repeated and lengthy hospitalizations, he said he was on the verge of giving up on medical treatment until his niece, an operating room nurse, helped him find a different transplant center.
“She was the one who really got me going,” said Coyle, 76 of North Attleboro, Mass. “I had told my wife that we would go home and just try to live the the best we could. And I was prepared to do that, but my niece wouldn’t allow it.”
Partly in response to situations like Coyle’s, CMS relaxed sanctions on transplant centers that failed to meet standards, which are based on numbers of failed transplants and one-year survival rates and calculated through yearly national averages and risk profiles specific to a hospital.
For those that remained within 185 percent of the standard, the violation would be deemed a “standard-level” deficiency, which typically leads to closer monitoring, rather than a “condition-level” violation that puts funding from Medicare in jeopardy.
For the eight years until the standards were relaxed, 145 transplant centers were cited for deficiencies and given a chance to make corrections. Most did, but 17 programs didn’t, and lost Medicare funding.
In a memo explaining its policy revisions, CMS acknowledged that its regulations were putting hospitals in a vicious cycle — by performing fewer risky surgeries, they improved their overall outcomes, setting the bar that much higher for all other hospitals to meet. The end result was an ever-shrinking margin of error.
By 2014, the memo noted, the rates of failed kidney transplants allowable under the rules had dropped to 7.9 for every 100 transplants, a 26 percent drop in the number of allowable losses since 2007. In addition, one-year patient survival rates were also increasing for kidney, heart, and liver transplant patients, which also had the effect of raising the performance bar even higher.
Meanwhile, the memo also flagged concerns about organs going unused, citing the 20 percent increase in discarded kidneys.
“We are concerned that transplant programs may be avoiding the use of certain available organs that they believe may adversely affect the program’s outcome statistics,” CMS’s memo stated.
Being okay with imperfect organs
Many patients would gladly accept organs that are discarded because of real or perceived imperfections, said Nathan, of Gift of Life. But decisions to reject those organs by transplant centers don’t give them that opportunity. In general, centers are seeking organs free of disease and certain biomarkers that could impair function or cause complications after surgery.
Studies have repeatedly raised questions about whether organs are being tossed out unnecessarily. A 2014 study published by the American Society of Nephrology noted, for example, that transplant centers often relied on low-quality biopsy results as the basis for rejecting kidneys. Another study published in Circulation, the journal of the American Heart Association, found no association between survival rates and the presence of a biomarker that is commonly used as a rationale for rejection.
That journal Circulation study, published in June, stated, “Although numerous organs are not accepted for transplantation for valid reasons, it is also true that many centers are unwilling to take risks on donor hearts, especially in the current climate where institutional outcomes are publicly available.”
Jesse Schold, a staff member in Cleveland Clinic’s department of quantitative health sciences, said the rejections are exacerbating the shortage of organs for patients who desperately need them. “Unfortunately, the candidate population has continued to increase over time,” he said. “Even if one patient is not afforded the opportunity [to receive a transplant], there are 10 lined up behind them.”
In many cases, patients seeking transplants are unaware of the forces working against them or how to be effective advocates for themselves. In addition to those who are removed from waiting lists, others are told they aren’t healthy enough to be put on the list in the first place, leaving them to face inevitable death or to seek help from another transplant center.
Barnes, 53, has been turned away by transplant centers in Charleston, S.C., Jacksonville, Fla., and Durham, N.C., according to his wife, Kathy. She said her husband — who cannot speak or walk due to complications of liver disease — has been repeatedly told that he is too sick to get a transplant. He is now on a waiting list at UMass Memorial, whose performance on liver transplants has allowed it to take riskier patients. But after all the travel and rejections, Kathy Barnes said, her family is running out of time and money.
“We’ve been back and forth to all these hospitals, staying overnight and driving,” she said. “It’s very costly. We’ve had some friends do fundraisers and things for us, but we’ve gotten behind on our mortgage. I can’t believe we’ve lasted this long.”
She added that her husband has consented to receiving a liver that could result in other complications in order to move up the list. “Nowadays, if you do develop HIV, you can treat that. If you develop Hepatitis C, you can treat that,” Kathy Barnes said. Her husband could still be delisted if his condition significantly worsens or he becomes too weak to undergo surgery. So far, he is holding out hope his name will rise to the top of the list soon.
Coyle, the patient who has already received a transplant, said he was told by doctors at Beth Israel Deaconess Medical Center last year that he was not a viable candidate for a transplant. He said he left the hospital thinking he had six months to a year to live, until his niece helped to connect him to the program at UMass Memorial. He said he does not harbor ill against Beth Israel for declining to provide a transplant, noting that he was extremely ill when he was admitted last year with severe kidney and liver problems.
“It’s hard to get upset when they got my kidneys back in order,” Coyle said.
Jennifer Kritz, a spokeswoman for Beth Israel, declined to discuss Coyle’s case because of federal privacy rules. But she said in a statement that the hospital uses dozens of criteria to evaluate transplant candidates, including age, cardiac function, frailty, and ability to comply with medication instructions, among other factors. “Decisions regarding candidacy are made in the best interest of the patient and are based on the likelihood of a successful outcome for that patient after transplantation,” the statement said.
Coyle said he underwent a battery of tests at UMass Memorial before the hospital agreed to put him on its transplant waiting list. It was about 10 weeks later — after having fluid drained from his gut multiple times — that he got the call he had been waiting for. Doctors in Worcester told him they had a liver for him.
“I got up there and they said, ‘It’s not a perfect liver. You can turn it down if you want to.’ And I said, ‘What the hell would I turn it down for?’”
Since the successful surgery, Coyle has had some setbacks. He was hospitalized for 17 days after catching a virus, and then he broke a rib when he fell against a lawn chair. But he said he’s been able to spend time with his family and enjoy the rhythms of summer.
“I was able to I get back down to the Cape and put my feet in the water,” Coyle said on a recent afternoon. “I couldn’t go in the water, but I put my feet in. It’s one day at a time, but it’s nice. I feel good.”
Update: James Barnes underwent liver transplant surgery at UMass Memorial Medical Center on Aug. 10. He is listed in fair condition in the intensive care unit, a hospital spokeswoman said on Aug. 11.
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I was rejected for liver transplant back in November at Mayo Clinic in Jacksonville, FL, and I got cirrhosis from the rare, genetic Wilson’s disease! The reasons they gave for rejection were lies–they just didn’t like the fact that I was using medicinal cannabis in my home state of NJ, even though I had already abstained for over a month when I learned of their rule against its use (which is utterly ridiculous. Did you know that there is proof that medicinal cannabis helps prevent organ rejection? My Primary believes they also rejected me because I came from out of state, which means I would be fully responsible to pay the 20% Medicare copay without help from Medicaid/HMO. We wasted thousands of dollars for room/board, food, & anything else we needed. The hepatologist there worked along with the psychiatrist to make it seem as if I have a psychosis–he assessed, in 15 minutes, amazingly, that I had Borderline Personality Disorder. I have a shrink here in NJ who says otherwise. When I told my Primary, who’s been practicing medicine for 40 years, he was outraged. He wrote to the hospital & specifically to the hepatologist to whom I was assigned. They got back to him, he looked over the papers with my GI doc, & my doctor realized he’d been lied to, as well. He said it’s not the first time (which i already knew–a friend was rejected there, as well), and it won’t be the last. They’re an elitist institution & despite the rarity of my case they didn’t want me because apparently a drug addict with a psychosis (that BPD crap, I know, was completely made up as a way to justify possible rejection to be on the list. The psychiatrist is an idiot who gave himself away & contradicted himself in the process–he said that they’re afraid, because I supposedly have BPD, that if the transplant did not go smoothly I would badmouth the Clinic. What they failed to realize is that I am part of a liver transplant page group & I know about the complications that can occur post Tx, and I’m not an idiot. I mean, they actually thought I would badmouth the hospital if they intend to save my life & there’s an unforeseen complication, and not badmouth it for rejecting me for life, which basically is the same as saying, “Frick you. You can die for all we care.” I can’t begin to tell you how depressed I became–they had toyed with my life & put a bad mark on my record that is a big, fat lie.
Mayo Jax is the epitome of the type of hospital described in this article, yet the strange thing is they DO utilize compromised livers! The place has an undeserved stellar reputation & I’m sure their lawyers are barracudas. For anyone who was thinking of going to Mayo Clinic for transplantation, I’d suggest going to Jackson Memorial, instead. They follow the moralistic code of the Compassionate Care Act if you medically use cannabis, they work together with another hospital as well as the VA (and we all know that many veterans utilize marijuana for their physical, mental & emotional suffering), and are overall a much more progressive hospital with a great rep. Mayo Jax claims all their doctors are compassionate–lies, lies, lies!
The waste of organs was one of the problems that UNOS/OPTN was created to fix in 1984. Time to scrap UNOS/OPTN and start anew.
https://www.beaconreader.com/dan-walter/why-the-campaign-for-living-kidney-donation-is-bullshit
My husband was turned down by MUSC, Chapel Hill, Duke, Mayo Clinic and Cleveland Clinic for a lung transplant in 2014 and early 2015. Most reasons came down to age or a reason another hospital would tell us he did not have. UPMC in Pittsburg gave us a chance and now one and a half years later he is doing great. Glad we could give good stats to UPMC and sorry he was not the “perfect” patient the other hospitals had to have.
Susan, which Mayo turned your husband down, & what was their reason, if you don’t mind my asking? Did you and your husband feel as if something didn’t add up? It certainly didn’t for me.
I was lucky enough to receive a kidney transplant in 2006. The only problem, I was told, was that it had been deprived of blood flow for a while and that it might take a while to “perk up.” I went for it. It works wonderfully. Everyone should have the opportunity to take the chance.
Just farm out organ transplantation to the V.A. as a contractor. They don’t care what their record looks like.
James “Paul” Barnes had his liver transplant Wednesday Aug. 10. We received the call 11:15 to come to UMASS ER and he was on the stretcher rolling to the OR at 12:30 smiling ear to ear. He smiled from the moment I told him! At 6:30, Dr. Bozorgzadeh said the surgery went smoothly without complication. He came off the ventilator the next morning first try. The other hospitals were concerned that he’d be difficult to wean off the vent. UMASS has an excellent ICU Staff. He is making good progress daily. We are truly thankful that Drs. Zacharias and Bozorgzadeh gave him a chance when no one else would.
So nice to hear this! As I read the story I hoped that he had recieved a liver. I had a liver transplant May 2015 after 4 years on the list.
My son is currently at children’s of Alabama in Birmingham Alabama and he was denied being listed for a heart due to his vaccine status. My son is seven months old and is unvaccinated for religious reasons along with health reasons and they are denying him because of that. Despite many studies showing vaccations likely can be a contraindication for grafting purposes, thus causing rejection. It’s good to know that your husband has done well and the hospital gave him an opportunity. Do you have an update?
The comment that transplantlation is one of the most complicated things there is should be heeded. It’s neat to see a view contrary to having standards, and have supporting anecdotes around failures of inaction that occur while waiting for standards to be met. But it doesnt take much to imagine the kind of articles that would be written if looser standards led to more deaths overall, or even if just a few deaths occurred – every death tells a story.
The catch-22 of medical care when you’re dying and the Hippocratic Oath requires doctors to do no harm is a tricky calculus. It’s incredibly hard for patients to be in this situation – I hope we end up with fewer missed opps to save lives but simply arguing the side that standards cause deaths paints an incomplete picture.
Thank you. For every anecdote of someone who had a successful transplantation there are dozens more of agonizing rejection and complication. Money isn’t the only variable in the equation but it is a factor, as the stats since 2007 don’t lie. However, this conversation is a part of a much bigger ethical issue that our society is still struggling with related to futile medical care and end of life quality, which you allude to. As society grows out of it’s absolute faith in science in general, healthcare providers too, are becoming more sensitive to the need for more balance between hope and reality in medical decision-making. Sometimes it is the patient who is more unbalanced on one side and sometimes it is the provider. To suppose that a doctor’s fear of bad outcomes is only motivated by the financial repercussions of that outcome is a cruelty in itself. Hopefully the intelligent readers of SA will appreciate the complexities of these decisions, and apply the same logic to the argument made here as to the claim, recognizing that while these standards themselves have associated negative outcomes, the are necessary and vital to the pursuit ethical medicine as a whole.
So the entity paying for the transplants (federal government) tells the hospitals hear is the mark I want you to hit or I will penalize you. The hospitals determine that if they do riskier surgeries they cannot hit the mark so they stop doing them and you want to criticize the hospitals? This is an example of text book governmental healthcare – the individual means nothing and hitting whatever arbitrary measure the government wants is all that matters.
I couldn’t agree more with Mike’s comment. Hospital’s should be ashamed. Horrible.
If appropriate, let the federal government penalize hospitals for their poor performance. And for hospitals that commit the unconscionable act of tossing out usable organs so as not to risk harming their track record and adversely affecting reimbursements, cut them off entirely. Shut them down if that’s what it takes. They are unsafe places for sick people. Criminally prosecute where appropriate, and provide assistance to families who wish to sue.
Spoken like someone who never has to make a difficult decision. Sue all the transplant centers that don’t do what you want and after they all shut down, then what? Gonna do them in your garage? The fact is that transplantation is about the most complicated, highly regulated and therefore most expensive thing done in medicine. Adding more lawyers and lawsuits is not going to help the situation. It is the do-gooder trying to require perfect at the expense of probably good enough that put us in this situation.
What? Just change the grading so that the system is designed to encourage the most possible transplants with a fair or better chance of success vs the quality of the transplants. It’s a scenario where the inputs are variable and out of the control of the hospitals and the results are also out ofthe control. But the doctors and hospitals are able to make decisions of how to best allocate resources available so they should be encouraged to do as much as they can in a safe manner. It just seems the current rules leave incentives for gaming the system that are opposed to what most people actually would want for results.