This article first appeared in the St. Louis Beacon, Aug. 19, 2009 - When it comes to health-care rationing, the discussions can be anything but rational.
In the current highly charged atmosphere over changes in health care, "rationing" is one of the hottest buttons around. Yet any debate over how medical resources can be used most wisely inevitably reaches the fact that because demand outstrips supply, patients can't ever get everything they want, so some form of allocation is needed. That's what rationing is all about.
"One of the things that would really help in this debate is if people would realize that rationing goes on today, quite a bit," said Tim McBride, associate dean of public health in the George Warren Brown School of Social Work at Washington University.
"When people come in the door, one of the first things they're asked is, 'How are you going to pay?' "
But calling such a process rationing often stirs a pot that already tends to bubble over too quickly.
"The word evokes a lot of negativity," said Julie Eckstein, project director for the Missouri Project, part of Newt Gingrich's Center for Health Transformation. "Some people probably think it doesn't happen now, but if you're talking about people deciding who does and who does not get care, it is definitely happening now. Those decisions are being made every day."
The question then becomes: Who decides? Patient? Doctors? Insurance companies? The government? That's where the disconnect and the discord become most apparent.
"Rationing has a lot of implications," said Dr. Ira J. Kodner, a surgeon and medical ethicist at Washington University. "It's there. It's going to be there. Potentially there is going to be more. What everybody should want is that the person who decides on the rationing should have a patient's best interest at heart."
The problem comes, of course, when broad philosophical statements about access to care have to be translated to individual cases.
"If you have an ingrown toenail, it's not trivial to you but it's trivial to someone who has heart disease," said Ronald Munson, a professor of philosophy at the University of Missouri at St. Louis who has written extensively on medical ethics.
"Nobody dies of an ingrown toenail, but they do suffer. Don't they deserve to be treated?"
In a system that is mainly governed by the financial bottom line, Munson added, it is a typically American attitude that often creates culture clashes.
"As a society," he said, "we want it all."
IS HEALTH CARE A RIGHT?
Deciding who should get health care wasn't much of a problem until medicine became sophisticated enough to be worth the effort.
"When you can do more than just amputate legs and treat malaria with tree bark, it becomes something of value and the foundation of other values in our society." Munson said.
It also becomes a point of philosophical debate -- polite and not so polite, depending on the setting, particularly when big changes are under consideration. As Congress ponders what reforms, if any, the nation needs, people who may have given little thought to health care and its consequences have suddenly focused their attention on the issue in a way that is not always the most illuminating.
One of the key points of the discussion: Do Americans have a right to health care?
John Mackey, co-founder and CEO of Whole Foods Market, sparked spirited response with a recent op-ed piece in the Wall Street Journal, where he said flatly:
"A careful reading of both the Declaration of Independence and the Constitution will not reveal any intrinsic right to health care, food or shelter. That's because there isn't any. This 'right' has never existed in America."
To Munson -- and others, who called for a boycott of Whole Foods after Mackey's essay ran -- that assertion runs counter to experience.
"I think we as a society are not against recognizing that right in the context of how we see our society," he said.
"We just assume that if we have the kind of society we want to have, we don't want to go around in fear of being mugged or attacked or killed. Do we want to go around in fear of having to hold bake sales to raise money for health care?
"I don't see how people can be opposed to providing at least a minimum level of health care. We're not only the richest society in the world, we're the richest society in the history of the world, and we don't guarantee even the most basic kind of care."
WHAT KIND OF CARE? FOR HOW MUCH?
Kodner, who heads the Center for the Study of Ethics and Human Values at Washington University also speaks from personal experience as a surgeon. Spending one day a week at ConnectCare, where uninsured patients seek treatment, has been a harsh lesson in how health care really works.
"What it is like to negotiate the health-care system without insurance is eye-opening, terrifying and un-American," he said.
But even for the insured, Kodner added, the situation is hardly run in the most efficient manner. He recalled a case where a patient had to receive nutrition through a procedure called intravenous hyperalimentation. Kodner wanted it to be done in the most cost-effective manner, but he ran into a bureaucracy that had other ideas.
"If we did I at home, it would cost $150 a day," he said. "Medicare won't pay for home hyperalimentation. They would pay for it to be done in a hospital or an extended care facility.
"I asked the question: Let me get this straight, you'll pay $1,500 a day but you won't pay $150 a day? The person who was chairing the panel was a podiatrist. The response was that it was too open to abuse if we let patients do it at home."
Decisions made in that way, Kodner said, skew how scarce medical resources are used. Too often, they also run counter to what patients, their families and their physicians really want.
"The majority of expenditures in our medical system comes during the last six months of life," he said. "The most expensive bed in a hospital is in the intensive care unit. If you ask people my age or older, 'What's your vision of your own death?' no one says I'd like to be in intensive care, on a respirator, with arterial lines in both arms, with lights on and noisy machines, and by all means I don't want my family with me. But that's generally the situation in our system.
"If you look at patients in all intensive care units, a third of them don't want to be there. They are not benefiting from being there. The family doesn't want them to be there. They have already exceeded their Medicare reimbursement, so the institution doesn't want them there, and the beds are filled so they can't put other patients in there."
Too often, added Louise Probst, head of the St. Louis Area Business Health Coalition, the high cost of health care is made worse by treatments that don't really do much.
"I think the public is smart enough to understand that more care isn't always necessarily better care," said Probst, who was trained as an ICU nurse before moving to the coalition, which counsels businesses on getting the most for their health-care dollars. "Isn't it sad that we have to limit care when there is so much excess in the system that is not adding value?
"When consumers have good information about what works, what doesn't work, what will happen to them with treatment and what will happen without treatment, they are far more conservative than what physicians may recommend."
PERSONAL EXPERIENCE ABROAD
Elizabeth de Laperouse has lived in France, Spain and England and comes from a family of doctors in Canada. Now living in the Ladue area, she has a perspective on the health-care systems in other countries that does not reflect well on what she sees here.
The word she uses to describe the problem: callousness
"My son had a bicycle accident," she said of an incident after she returned to the United States in 1992. "His jaw was shattered. I rushed him to the emergency room. Here I had this little boy, and the nurse was looking at me and saying, 'Where is your insurance card?' I said that's not something I'm worried about; I'm worried about my son. I was shocked.
"Another time, I was at a major hospital here for a routine X-ray, and an immigrant family came rushing in, very nonplussed. The technician taking my information said to them, 'This is not the emergency room,' and the family went running off, just wondering where to go. I was just stunned. I would much rather have stayed an extra half an hour there and had someone get up and show that family just where the emergency room was."
Taking care of her elderly mother here, de Laperouse said that the contrasts between the health-care systems she was used to overseas and what she found in the United States were stark.
"Many of her health-care decisions were made with this overriding fear that she would run out of money and not be able to take care of herself," she said. "You just don't have that concern in a country where health care is provided for all levels."
If she had to choose which of the foreign systems she preferred, de Laperouse said she would choose the French model. She recalled how she was treated when she had her third child there.
"They said, we're not going to send you home until you are ready to go home," she said. "The last thing we need is for you to get sick when you have three children. Once I was home, I got physical therapy every day for a month. It not only got me up and running quicker, but there were medical personnel there for me and for my children every day."
As her job, de Laperouse sells long-term care insurance.
PRESCRIPTIONS FOR CHANGE
So if health-care rationing already exists, and the supply of medical resources is not likely to ever exceed the demand, how can the system be improved to make health care more equitable?
Julie Eckstein, of the Center for Health Transformation:
"We need to reform the incentives in the system for providers and hospitals. They are not being paid to keep people healthy. They are being paid for volume."
She also suggests increased consumer information, so patients can make better choices, and a system of health courts, like family courts or drug courts, to help adjudicate disputes over the allocation of care.
"Look for cost and quality data, to determine where you should be going," Eckstein said. "Just like in any industry, advertising can be misleading. Just because someone is in the top 10 hospitals in U.S. News and World Report, you still have to look at how those decisions are made."
Tim McBride, of Washington University:
"I wouldn't call it rationing. I think we need to call it information for better decision making or something like that. We need to come up with a lot more evidence of what works and what doesn't; then we can pass it along to patients.
"We don't seem ready to have the debate now. It will take more of a crisis on the cost side. I don't think people really want to give up anything. I think we may get there after the baby boomers start retiring in greater numbers because the costs for Medicare will really go up at that point."
He also wants society as a whole to be more of a factor.
"One of the things that is becoming pretty clear in this debate is that there are financial tradeoffs. When we spend money on medicine, we can't spend it on other things, like education or paying down our debt."
Louise Probst, of the business health coalition:
She places her emphasis on information and education, along with aligning financial incentives with quality care.
"We have kept people from having access to information because we thought it might not be fair to the providers," she said. "We really need that access because the injustice that is being done to the public at large is just too great."
She'd also like to see hospitals adopt a concept like a warranty: If your treatment didn't fix the problem, they will make it right, free of charge.
"By not being paid for readmissions," Probst said, "you bet that hospitals will make sure that when patients go home, they will be ready."
Ronald Munson, the medical ethicist at UMSL:
He'd like to see a single-payer option, either a public plan or health co-ops. The system could work like that of public education: Everyone would pay for care, and they could use that plan or be free to pay for something else, like tuition to a private school.
Such an approach would help get away from the current system that depends on market principles, he said.
"If you have the money, you can buy it. If not, then you can't. It has not turned out to be the most efficient form of system, and even in the most strict form of market capitalism, there are restrictions. We don't buy and sell slaves. We don't allow people to sell babies.
"We have health and safety regulations that pure market capitalists might object to as reducing the return on their investment."
Ira J. Kodner, the Washington University surgeon and ethicist:
He wants the primary care physician to take the lead in determining what is best for the patient. That approach, he said, would help reduce the emphasis on the bottom line and put treatment decisions back where they belong.
"I want the person to decide rationing who knows more about medicine, who has the best knowledge of compassionate and ethical care and is not out to make a profit."
He also would like doctors to be able to have fewer worries about liability, so they can practice less defensively.
"Probably the worst consequence of defensive medicine is that physicians are going to refuse to take care of the high-risk patients," he said.
"Everyone wants to take the gall bladder out from the affluent person in West County who is in good health, but no one wants to touch the hypertensive patient from ConnectCare who has never had any health care."
Further, Kodner wants to reduce the disconnect between choosing health insurance and having to use it.
"There has never, ever, ever been one person who comes in and says, 'You know, Doc, I know I bought the cheap policy for Mom, so I don't expect you do everything.' When it comes to health insurance, we live in society where people want to pay for a Kia, but when they go to drive it, they want a Cadillac."