Hospitals face hard choices
When resources are limited, who should live and who should die?
‘If you only got so long to live, you might as well go for it.’ — Rex Parton
Rex Parton couldn’t believe what his doctors at Vanderbilt University Medical Center were telling him.
The 71-year-old Athens, Tenn., resident was suffering from heart and kidney problems and “I couldn’t walk 25 or 30 feet without sitting down on the ground because I couldn’t breathe anymore,” he said Friday.
Doctors had inserted an LVAD — left ventricle assistive device — in the left side of his heart to help pump blood. But it was not working, and Parton’s health was failing.
“They said, ‘Mr. Parton, you really need a transplant, but you’re past the age,” he said. “My wife and I looked at them and said, ‘What do you mean, past the age? You’re telling me I may live two more weeks.’”
But the doctors insisted they were only following hospital policy — patients over 70 years of age were not eligible for heart transplants because surgeons believed it was unlikely they would survive the operation. There were only a limited number of hearts available for transplant, and they needed to be used in cases in which they were most likely to keep a patient alive for many years. And Parton needed both a heart and a kidney.
“I can understand that,” Parton said. “If they’ve done it before on people my age and it didn’t work, because they were not strong enough to hold up to it, I can understand that.”
But while Parton understood, he didn’t agree.
“My wife and I kept pushing them, we wouldn’t give up,”
he said. “If you only got so long to live, you might as well go for it. I was already on dialysis three days a week, so I had no quality of life at all.”
Parton was fortunate. His own physicians, Dr. Ashish Shah and Dr. JoAnn Lindenfeld, took up his case, arguing to their fellow doctors on the committee that sets the rules for transplants.
“He was such a good patient as far as his compliance, his ability to successfully follow a complex medical regime, his high health care literacy and his self advocacy,” said Shah, surgical director of Heart Transplant and Mechanical Circulatory Support at Vanderbilt Medical Center. “Age and renal failure made him not a good candidate on paper, but because of our collective experience, we set aside conventional wisdom and utilized our instinct.”
This past April, Parton got his heart and kidney transplant. He’s feeling good enough that he spent Thursday working in the yard all day.
“I got up yesterday morning at 6 o’clock, and I didn’t stop until 9 o’clock last night,” he said. “I was working in the yard and cutting down a couple of big trees.”
But Parton’s case illustrates a difficult ethical question doctors and hospitals have to address. If the demand for a life-saving organ or medical equipment or a drug exceeds supply, how do they decide who gets it?
Doctors and hospitals have always had to ration health care in certain situations, as a matter of course. A patient already in the emergency room with a broken foot may have to wait to be seen if an ambulance suddenly arrives with several seriously injured victims of an auto accident. In a major disaster such as a mass shooting, emergency room staff will examine every patient to determine which ones have a chance of being saved and which are too badly wounded to survive, and assign doctors accordingly.
The state of Tennessee has what are called the Crisis Standards of Care Guidelines “for the ethical allocation of scarce resources during a community-wide public health emergency.” Each hospital has set up a committee to decide how the guidelines would work in an emergency.
“They need to decide how to triage, which patients would be admitted and into what type of unit,” said Dr. John Benitez, medical director of the Tennessee Department of Health’s emergency preparedness program. “If there is a shortage of medications or equipment or staff, they need to decide how that would be handled at that local level.”
The guidelines should allocate care based on medical need, Benitez said. “It should not depend on social worth or non-medical factors,” he said.
Those non-medical factors would include age, income, race, profession, or even whether or not someone was in jail, he said. But they could include whether a patient was in poor health or suffering from some other life-threatening disability.
Some hospitals outside Tennessee have reached out to the neighboring community for advice.
For the past several years, Dr. Lee Daugherty Biddison, a critical care physician at Johns Hopkins hospital in Baltimore, has been working with residents to develop guidelines for how care should be rationed when a surge of patients — from a disaster, disease outbreak or terrorist attack — overwhelms hospitals, according to The New York Times.
“I don’t want to be in a position of making these decisions without knowing what you think,” Daugherty Biddison told participants in a public meeting. “We as providers don’t want to make those decisions in isolation.”
Rationing already occurs in delivering medical care in the United States, although some practices are little acknowledged, according to the Times. During widespread drug shortages in recent years, doctors have sometimes chosen among cancer patients for proven chemotherapy regimens and among surgical patients for the most effective anesthetics. And doctors sometimes have to choose among patients who need treatment in intensive care units, which are often filled to capacity.
In emergencies, the choices can have immediate life-or-death consequences. After Hurricane Katrina in 2005, doctors made ad hoc decisions about which groups of patients to evacuate from hospitals when floodwaters rose, the power failed and heat climbed. At one medical center, many of the sickest, chosen to go last, died. During the H1N1 influenza pandemic in 2009, thousands of young people developed severe respiratory distress. For some of the most critical cases, doctors tried treatment on heart-lung machines. Rationing took place because the costly and resource-intensive therapy, which doctors were not sure would help, was available in only about 120 hospitals, The New York Times reported.
At least 18 states from New York to California, and numerous hospitals, including the 152 medical centers operated by the Department of Veterans Affairs, have already developed protocols, some with the support of federal hospital preparedness funding. But relatively few people know about the plans for allocating scarce resources, and fewer still have been consulted.
Some of those guidelines are nuanced and flexible to context. But others call for doctors to categorically refuse hospital admittance to older adults and those with certain pre-existing medical conditions, such as kidney failure or advanced cancer, in a severe pandemic.
In Maryland, participants in the forums, designed with the help of Carnegie Mellon University’s program for deliberative democracy, tended to favor saving the most lives or years of life by prioritizing people who were expected to survive their current illness or live the longest after being treated. However, many also said that a lottery or “first-comefirst-served” approach would be appropriate for patients who had roughly equal chances of benefiting.
Some medical experts told the Times that keeping the guidelines flexible is important, given the range of crises a hospital was likely to face.
“The kind of judgment that’s required to arrive at a good decision in these situations needs to be extremely sensitive to the context,” said Charles Blattberg, a professor of political philosophy at the University of Montreal. “It’s not about just abandoning one lone doctor to their own devices to make it up on the spot, but we can’t go the other extreme in thinking we have the solution to the puzzle already; just follow these instructions. That works for technical problems; these are moral, political problems.”
For his part, Rex Parton is glad his doctors were willing to revisit their rules and consider his individual case.
“They kept fighting for it, and they need a lot of recognition,” he said. And his new heart and kidney have given him a new appreciation for waking up each morning.
“I love life, and I think there are some people who don’t realize how great it is,” he said.
The New York Times contributed to this story.
Contact staff writer Steve Johnson at 423-7576673, sjohnson@times freepress.com, on Twitter @stevejohnsonTFP, or on Facebook, www.facebook. com/noogahealth.