For the past seven months, Jim Kuhn, 53, has been in intensive care in a West Palm Beach hospital with a failing heart, watched over daily by his mom and dad in a case that raises fundamental questions about the value of life and the national push to drive down healthcare costs.
His family, his doctors and the staffs of three U.S. senators have battled without success to get him the operation he needs, pressing four hospitals, including Jackson Memorial, to install an expensive heart pump that could keep him alive.
But a combination of little-known Medicare limitations, hospital requirements and, most recently, uncertainty over Kuhn’s ability to endure the surgery have amounted to a life-or-death situation for the former truck driver. As Kuhn waits in a hospital bed, his family hopes his condition will stabilize while they and senators, including Miami’s Marco Rubio, search for a way to get him the help he needs.
His cardiologist, Steven Borzak from Atlantis, says the surgeons he contacted at other hospitals where Kuhn might undergo the operation have all been positive, but the problems begin when finances are considered. “They say the procedure is medically pretty straightforward. ‘Sure we’ll take him,’ they said. And then the clipboard people” — hospital administrators — “get involved and then it falls apart.”
Last week, the situation became even more complex. Borzak said that after inquiries by the senators’ staffs and a reporter, doctors from two hospitals, including Jackson, notified him they were reconsidering their rejections. Medicare also reevaluated Kuhn’s status. But then Kuhn’s condition worsened, making him a less likely candidate for a heart pump, at least temporarily, his cardiologist said.
Ultimately, that pump may be Kuhn’s only chance. His heart is so bad that he’s been disabled for a decade, meaning he qualifies for both Medicare and Medicaid, the state-federal program for the poor. “If we don’t get the doors to the hospital open, there’s no chance he will live,” said Fred Kuhn, Jim’s brother, who speaks for the family. “If we get the doors open, there’s a slim chance.”
The case has been pushed vigorously by the staff of Rubio, a conservative Republican who endorses major changes in Medicare to keep the program for seniors and the disabled from going bankrupt.
“What is upsetting to me is that all of the parties involved seemed to have gotten to ‘no’ pretty quickly,” Rubio said in a statement released last week. “No one was working on how to get to ’yes’ for Mr. Kuhn. Not Jackson Memorial, not [the Agency for Healthcare Administration] and not the Palm Beach County health care district representatives. No one was working together to try and figure out how this man’s life might be saved.”
Two other senators also tried to help: Sens. Bill Nelson of Florida, a Democrat, and Orrin Hatch of Utah, the ranking Republican on the Finance Committee, which has huge clout with government agencies.
“It took two weeks, the involvement of three U.S. senators, and the assistance of the staff at the Florida Hospital Association to even get Mr. Kuhn an evaluation for the operation that he was ultimately denied because of his deteriorating health status. It is a sad day when patients are treated like numbers instead of human beings,” Rubio wrote.
Rubio said the Kuhn case is “certainly isn’t the reason Medicare is going bankrupt. He had insurance — government-provided insurance through Medicare and Medicaid. He was caught in an inflexible, bureaucratic system that didn’t take into account that he’s a patient, not merely a number.”
The hospitals would not comment on the Kuhn case, apparently to protect patient privacy, but according to Rubio’s office, Jackson Chief Executive Carlos Migoya contacted the senator last week and told him a four-doctor panel that reviewed the Kuhn case concluded he was not eligible for the procedure.
Last week’s developments — Jackson and University of Florida’s Shands hospitals told Borzak that finances were no longer a barrier — have given Kuhn’s family and doctor a flicker of hope. “They haven’t completely closed the door,” Borzak said.
A Medicare spokesman in Washington said Friday that the agency has been in touch with Kuhn’s family and is “assisting this beneficiary in any way we can,” but on Monday Medicare’s regional office in Atlanta told the Kuhn family that Jim had no days available.
The son of a Chicago area firefighter, Jim Kuhn moved to Boynton Beach in the 1980s and worked as a truck driver before his heart condition became too severe. Single, with no children, he has been hospitalized five times in the past year alone. He has had four defibrillators inserted, including one in December.
This year , while he was hospitalized at JFK Medical Center in West Palm Beach, he twice became infected with MRSA, a serious staph infection that doesn’t clear up with ordinary antibiotics. In February, Kuhn’s cardiologist team decided he needed a Left Ventricular Assist Device (LVAD), a $90,000 heart pump that former Vice President Dick Cheney used while awaiting a heart transplant. The pump is implanted in the chest, with an external cord connected to a computer and power supply. Kuhn didn’t qualify for a heart transplant for reasons including being considered overweight , said Borzak, but LVAD devices also work for heart-damaged patients like Kuhn. In Kuhn’s case, Thoratec, maker of the LVAD, has agreed to donate the device, Borzak said.
“There’s a growing number of patients that have this as a permanent treatment,” said Joseph Rogers, a Duke University physician who has studied the devices. He said studies have shown that 80 to 90 percent of patients with advanced heart failure die within a year without LVADs. Patients like Kuhn who are given the device as a permanent solution show 63 to 75 percent chance of surviving at least two years.
JFK Medical Center doesn’t implant LVADs, which are generally handled at transplant centers. Kuhn’s doctors called Jackson Memorial, Tampa General, Shands Gainesville and the Mayo Clinic in Jacksonville to see if any would implant the device.
“Shands was the first one to let us know that Jim was running out of Medicare days,” said Fred Kuhn. Kuhn’s lengthy and frequent hospitalizations meant he encountered a rare problem with Medicare. Regulations limit pay to 90 days in the hospital for “one spell of illness.” A patient has another 60 “lifetime” days that can be used only once. After that, a patient must be out of the hospital for 60 days straight before a new “spell of illness” begins.
Starting last September, Kuhn had been on one “spell of illness.” Last spring, doctors transferred him to a nursing home to see if they could reset the Medicare clock. But in four days, he had to be hospitalized again.
By spring, he was completely out of Medicare days. Borzak, the cardiologist, said no hospital wanted to implant the LVAD in an uninsured man. The only way to reinstate his Medicare days was to keep him out of the hospital for 60 days, but that would likely kill him.
Borzak said the family isn’t upset with the hospitals: “They’re frustrated with the insurance cap.”
The cap has been in the Medicare act since its creation in 1965, said Gerard Anderson, a Johns Hopkins health policy expert. “Medicare is a program for acute illness, not long-term illness.”
Medicare was set up that way so that it didn’t pay for long-term costs such as nursing homes. In 1986, President Ronald Reagan proposed the Medicare Catastrophic Coverage Act to fix the “glitches.” Congress passed the glitch act in 1988, but seniors rebelled because the act would raise their premiums. It was repealed in 1989 leaving catastrophic cases like Kuhn’s without long-term coverage.
Last week, Kuhn’s condition worsened and he was put on a ventilator. “He’s getting weaker every day,” said his brother, Fred. “It’s affecting his liver and kidneys.”
On Wednesday, Borzak said Kuhn’s condition had improved slightly and he planned to call doctors at Jackson and Shands with an update, to see if they considered Kuhn healthy enough for surgery.
But if a hospital had taken on Kuhn’s case a few weeks ago, Borzak noted, he might already be on the road to recovery: “The biggest culprit is the black Medicare hole that he fell in.”