Most of the arguments we're hearing about health care reform involve big numbers: Millions of people now uninsured, billions of dollars to be spent or saved. And that's probably the right place to start the discussion – in the middle of the bell curve where most people live. But what about the relatively few people on the rest of the bell curve? What about people who live only because their doctors took a chance that defied the statistics? How do we include them in the system? These are personal questions for me.
My dad is now 91. About two years ago, he was unconscious in the ICU and we were faced with a question: Should we let the doctors put him on a ventilator? Many people with Dad's age and constellation of conditions who go on the device come off the "vent" either dead or impaired. But the doctors told us there was some
chance it would help, and that the alternative was a rapid and peaceful end. Fortunately, my dad had a living will and had talked to my mother about the kinds of treatments
he'd want. We agreed he'd want the doctors to give it a try for a few days.
After two days, on his 90th birthday, Dad came off the ventilator. A week or so later, he was home with a hospital bed, home-health care, and a family that expected we were enjoying a last time together. A month after that, the hospital bed was long gone and Dad was more alert and active than he'd been in a long time.
But almost a year later, he was back in the hospital. Once again, the family was told to prepare for the worst. This time he was alert enough to talk to his longtime primary care doctor.
"Are you ready to die?" the doctor asked. "No," my dad answered. He spent about two weeks in the hospital, endured a series of unpleasant procedures, and once again was sent home. And once again, he regained his mobility and resumed his activities.
There's more, but you get the point. These days, Dad reads books, argues with the news on TV, handles the finances for himself and mom, struggles with AOL to check his e-mail ("This computer hates me.") and runs errands (though he doesn't drive). Not to sugarcoat: He's frail, on a bit of oxygen all the time, and sleeps with a "bipap" machine of the kind used by people with sleep apnea. He could die tomorrow from any of a half-dozen serious chronic diagnoses. But probably not. (And by the way, he gave me permission to write about him here. Informed consent.)
Medicare and the VA have spent many tens of thousands of dollars on my dad in the past year or two. A computer that was simply playing the odds would probably have given up a couple of times. A health care system based on rigid formulas, likewise.
So here's the challenge: How do we design a national health care system that uses our limited resources in a way that maximizes coverage for the majority but still has enough flexibility so that a doctor who knows his patient can decide – sometimes -- to defy the odds?
I addressed the question to several medical ethicists.
Dr. Tom Mayo is the director of Maguire Center for Ethics and Public Responsibility at Southern Methodist University in Dallas. He also teaches at the SMU law school and the UT Southwestern Medical School. He co-chairs the institutional ethics committees at Parkland Memorial Hospital and Children's Medical Center of Dallas.
The question of how to handle the statistical outliers will surely ignite a political firestorm as the health care reform debate moves forward, he said.
"I think we have to start in a position of humility," he said. "No system is going to capture all the nuances that you or I or your dad or some policymaker might want to capture."
Where should we draw the lines?
"Human bodies don't follow algorithms with anything like scientific precision. We can write algorithms for the fat part of the bell curve, but we also need to practice medicine," he said.
That means not spending money and resources on procedures that have very little chance of helping, he said. But it also means leaving some room for a doctor to identify the unusual patient who may defy expectations.
How do we leave room for miracles?
"At some point if you are trying to give God an opportunity to work a miracle, how much of a chance does God deserve? We often have those discussions when a patient's family has a very different idea for God's plan for the patient than the doctors have for God's plan for the patient."
And people who want to grasp every last chance will at some point need to pay for it themselves either through private insurance or their own money, he said.
Which means politicians and the public need to prepare for the inevitable high-profile stories about the statistical outliers, he said.
"What will get into the headlines of the papers and onto the blogs will be the cases here and there of either spectacular failure or spectacular success," he said. "And every system produces both."
Mildred Cho is associate director of the Stanford Center for Biomedical Ethics. She started out by challenging one of my basic assumptions.
"Your father's situation, though unfortunate, is actually very common," she said. "It is an increasingly prevalent situation in geriatric medicine, where the average number of co-morbidities is as high as 10 per patient."
Yikes! So as geriatric medicine gets better, patients like my dad – expensive and successful – will become more and more common. How do we figure that into the financial and resource equations?
"There are system-wide issues that drive health care costs up that are independent of the health status of individuals that are probably as influential as the complexity of care issue -- for example, the influence of the pharmaceutical and device industries," she said. "Ours is one of only three countries in the world that allows direct-to-consumer advertising of prescription drugs, for example, and this has been shown to lead to unnecessary prescribing. Another systems issue is the ethics of how physicians are paid for their services, which drives up costs."
So maybe if we fix other elements in the system, we make enough room for folks like my dad?
Dr. Maurice Bernstein is a med school professor at the University of Southern California, chair of Providence Holy Cross Hospital Ethics Committee in Mission Hills, Calif., and runs his own medical ethics blog.
He suggests that quality of life is a factor that should be much more prominent in deciding the kinds of medical care people get.
"It may be not politically correct to suggest that the ethical criteria should be quality of life. The reason I say 'not politically correct' is that for the vast majority of patients, unlike your father, at some point their QOL will be so diminished that one may argue that it would be in the best interests of health care reform to stop energetic and, of course, costly further diagnosis and treatment and just provide comfort care for the remainder of their lives. "
Who should make the decision about what is an adequate quality of life?
"Actually, it should be set by the patient him/herself and nobody else and certainly not a governmental agency, the physician or even the family. "
Is it likely that quality of life will be formally incorporated as a prime factor in the decision process?
"Unfortunately, I don't think we can if the lobbyists of the activist groups supporting care and justice for the disabled have their way... Another argument against using QOL in limiting health care procedures and treatments is that of concern that QOL determinations are being and will be made by bureaucrats, doctors and others but not by the patients themselves."
Dr. Jeffrey Bishop is director of clinical ethics education and consultation services at Vanderbilt University. Balancing the good of the many and the needs of the individual can't really be done by any simple formula, he said.
"We take from the social for the benefit of the individual, or we take from the individual for the benefit of the social. What counts as fair depends on where you are standing," he said. "The question is, do we, as Americans, share enough of the same values to be able to come to some level of agreement on risk and uncertainty?"
The more limits a health care system has, he said, the more errors we need to expect.
"We are going to have to say to patients, well, what we found on your CT is incidental, and we are not going to pay for another. Nine out 10 times we will be correct; one time out of 10 we will be wrong and hopefully by the time it makes itself clear that there is something wrong, we can hope that it is not too far gone," he said. "It is going to mean that we will have to send people home, not do tests and be wrong, losing some small percentage of patients. In other words, we are going to have to get used to our finitude if we are going to cut costs. No small feat for Americans, about whom my European friends said, 'You Americans really do believe death is optional.'"
Arthur Caplan is the oft-quoted director of the Center for Bioethics at the University of Pennsylvania in Philadelphia. Over the years, he and I have discussed practical applications of ethics on many medical issues. Here again, he had some rubber-meets-the-road thoughts.
Minimum-coverage guidelines will probably be set by a public health insurance option, if that gets through Congress, he said. And that system will need to set limits.
"How good is the basic plan going to be? Is it Medicare? That's pretty good, and I don't think it can be that good," he said.
So the system will need to have algorithms -- specified treatment formulas. And ways to appeal those algorithms. And the option for a patient or the patient's family to pull out their own wallet if they want to go beyond what the basic care offers.
"Saying that you want to keep the very old who are long shots in the Medicare program and continue to give them every possible procedure seems not to be the best use of funds," he said.
Whatever system we end up with will need to deal with the expectations of American patients. "This is still a country that wants to treat medicine as religion. We have a lot of faith in it," he said. "But it's too expensive and doesn't always square up with the science."
His one guarantee: That the system we now have will change. "I think it's political nonsense to argue that we don't already set limits and do rationing," he said. "It can't go on this way; it just can't. And everybody knows it."