Health care rationing and end-of-life issues may not count in the 2008 election, says this bioethicist. But just you wait.
The implications of new technologies like dialysis and in-vitro fertilization intrigued Arthur Caplan when he was a graduate student at Columbia University in the late '70s, and that curiosity has fueled his life's work as a bioethicist. "I was interested in who was getting dialysis, and why there weren't more kidney transplants and organs available for transplant," says Caplan. "There also was a big debate around that time about whether or not it was ethical to try to produce a test-tube baby."
Bioethics, says the dictionary, is concerned with "the study of the ethical and moral implications of new biological discoveries and biomedical advances, as in the fields of genetic engineering and drug research." Caplan has written or edited 25 books and more than 500 peer-reviewed papers and is a regular contributor to NPR, MSNBC, and other national media outlets. His newest book, Smart Mice, Not So Smart People: An Interesting and Amusing Guide to Bioethics, published by Rowman & Littlefield, will be available Nov. 25.
Caplan is the Emmanuel and Robert Hart Professor of Bioethics at the University of Pennsylvania in Philadelphia, where he also directs the university's center for bioethics and chairs its department of medical ethics. A Boston native, he holds a bachelor's degree from Brandeis University and two master's degrees and a PhD — in the history and philosophy of science — from Columbia. He spoke recently with Senior Contributing Editor Patrick Mullen.
MC: You wrote in 2004 that the biggest problem in bioethics was the failure of politicians to fix a manifestly broken and dying health care system. Assuming you still believe that's true, what are the system's most glaring failures?
CAPLAN: It's still true. A quarter of our population is uninsured and another 10 percent to 15 percent is poorly insured. We can't contain our system's costs. We spend much more on health care per capita than any comparable country. We lead the world in paperwork, angry physicians, and complaints about disappearing benefits in areas like mental health. We have a gravely ill and failing health care system.
MC: Do managed care plans, insurance companies, and other financial intermediaries have ethical responsibilities that differ from those of clinicians?
CAPLAN: Yes, they have particular and unique ethical responsibilities because society has assigned them and they've accepted the mission of cost containment. Those responsibilities fall under the rubric of stewardship. When health plans and insurers bellied up to the bar and said they could save money by introducing more market discipline using tools like group purchasing, they created an expectation. They have a responsibility to their members to be good stewards of resources, so they must make hard choices about what they'll cover, how far they'll tell members to travel for care or where they can get it. Their obligations differ from a doctor's, who needs to be a good advocate for getting resources for a particular patient.
MC: The Hippocratic oath has no cost-containment clause.
CAPLAN: Correct. Health care organizations and managed care organizations have an obligation to populations, not to particular people, and they're meeting those obligations to varying degrees. Some good efforts are under way to introduce more transparency and accountability into decision making about benefits, which improves fairness and introduces more consumer input into stewardship choices. On occasion, you'll see a managed care organization's spokesperson say that genetic testing may make sense in the long run. There has also been some awful managed care behavior — health systems that just extracted profits from and then closed facilities once they weren't making any money.
MC: Is for-profit health care an ethical oxymoron? For-profit health care was intended to bring badly needed market discipline to bear on the delivery of care in this country.
CAPLAN: I think we should be under a not-for-profit banner in health care. I don't understand why people think health care should be a for-profit enterprise. It doesn't mean that bottom-line considerations and making money don't enter into not-for-profit activity. Market discipline can exist on the not-for-profit side. No organization I've ever encountered is more sensitive to the bottom line than a not-for-profit hospital.
MC: Are there hot button issues in bioethics that are guaranteed to raise a controversy but ultimately aren't that important?
CAPLAN: Politicians like to talk about their strong opposition to rationing health care, even though every mayor in the country has to do it when it comes time to allocate flu shots. "Rationing" has joined "liberal" in the lexicon of tainted words in our politics. The last politician I recall talking honestly about rationing was former Gov. Richard Lamm of Colorado [see our interview with Lamm in Managed Care, August 2002]. Another issue that comes to mind is stem-cell research. It's an important issue, but the research won't produce an immediate return. We're talking about investing in an industry that may matter to 20 years from now. Another issue that fits the red-meat model for me is importation of drugs from Canada. It's a completely trivial sideshow. Most people can't get to Canada to buy drugs, and the potential market is tiny. But it gives those who want to go after the drug companies a chance to pound their chests and say, "I'll make it possible for 87-year-olds to drive to Toronto for cheap medicine."
MC: But you know it will come up in any northern border state that has a gubernatorial or U.S. Senate race this year.
MC: How fast are we approaching the end of the era of employer-sponsored health benefits?
CAPLAN: It's going to be around for at least another decade, but I think we're going to see it peter out. The automobile industry and other industries that are saddled with huge pension obligations are like tumors that signal that employment-based health care is not long for this world. There never has been a rationale for linking insurance to employment the way that we do it.
MC: It gave Franklin Roosevelt a way around his own wage and price freeze during World War II when he needed to give the equivalent of a raise to coal miners.
CAPLAN: Even before that, unions offered benefits to attract members at a time when it was hard to get people from different ethnic and racial backgrounds to join the same union. People like American Federation of Labor founder Samuel Gompers actually opposed what they saw as socialized medicine. Still, health benefits became part of the business-labor negotiation process.
MC: What might replace the current system?
CAPLAN: We could go to a voucher system or fund health care through an increase in the tax on your income much more efficiently than trying to have health benefits managers at some Fortune 500 company figure out your health insurance. We'll see further erosion of corporate viability as it keels over from ridiculously generous or poorly managed health and pension plans. At some point, a politician or two will stand up and say, "Let's go to a tax-based and voucher-based system."
MC: Has that politician been born yet?
CAPLAN: No. This is not something that will appear in the next election.
MC: So health care won't make it onto the short list of issues that will be center stage in the 2008 presidential election? Will it be drowned out by the debate about terrorism and the war in Iraq?
CAPLAN: I don't think health care makes the list in '08. I think it's an issue for 2012. When you factor in the deficit that our federal government is running, major health-care reform might get pushed even farther back. We're staggering along. One thing that will move things along is the aging of the baby boomers. Some people may think we're rationing care now and are up against the wall, but we haven't even gotten into the thick of it.
MC: So as baby boomers retire and qualify for Medicare, we'll see more de facto rationing? How might that play out as new technologies like genetic profiling become more widely available?
CAPLAN: We'll see more rationing, explicit and implicit, and more of a two-class health system. New technologies will go right to — and only to — the people who can pay for it. It's happening now with some of the targeted medicines that are appearing. Eventually, it gets to be politically tricky because some people will live and some people will die. Pressure will build to rectify that.
MC: While nobody wants to admit that rationing happens, of course it does. How does it work?
CAPLAN: Real-world rationing has two dimensions, justice and fairness. Justice involves allocating resources using evidence-based medicine, trying to pay for what works based on variables like age, ability to pay, and need. In some cases, it involves weighing a patient's relative social contribution, looking at whether you're a governor or a ditch digger. I won't say which is more important. With transplants, which we've been doing for a long time, it's clear that urgency and waiting time are the primary drivers. Fairness is the dimension that leads somebody to decide whether decisions are acceptable. Is the decision-making process open and transparent? Is there a process for registering complaints, and can mistaken decisions be corrected? People on organ transplant lists are willing to wait partly because they know the rules and they know that they can try to change them if they want.
MC: So they don't see the system as arbitrary.
CAPLAN: Exactly. The more accountability and transparency you've got, the fairer the system looks. That contributes to the perception that decisions are not arbitrarily imposed by mysterious committees in the cloistered conference rooms of managed care plans.
MC: You would cite the organ-transplant system as essentially fair?
CAPLAN: On the whole, the transplant system works pretty well. It's got accountability, it has public input, it corrects mistakes, organs and tissue are distributed on the basis of urgency. Facilities that perform transplants are certified in terms of competency and outcomes. Keep in mind that more than half the people who are waiting for a transplant die before they get one, so it's up against a very tough problem.
MC: What medical condition or area of the system fails the fairness and justice tests?
CAPLAN: In vitro fertilization and other reproductive technology. Access is driven by money; entrepreneurs have no accountability for their success rates or for what they do. Unscrupulous practitioners rip people off. Some get patients to go through risky procedures or promise single women in their 50s the chance to become pregnant. There are all kinds of abuses. It's a pure market.
MC: You're talking about people who prey on people's vanity and ability to pay, and as long as the money is good and the rules are loose, it will continue.
CAPLAN: Correct. It has continued for 20 years already.
MC: How much ethical responsibility does a person in a health plan have when it comes to drinking alcohol in moderation (if at all), quitting smoking, and avoiding a fat-laden diet? And is it just or fair for an employer to strip benefits from employees who can't or won't change unhealthy behaviors? A company in Michigan told its employees who smoked to quit — with the company's help — or be fired. Is that where we're headed?
CAPLAN: I don't think so. In general, companies don't want to get in the position of policing the behavior of their workers. A few have done it, but I don't think that's the future. Doctors don't like to do it either. They really don't like to say, "No bypass — or emphysema treatment or whatever — for you." While it's fair to try to get people to engage in less risky or healthier behaviors, I believe that's best achieved by rewarding desirable behavior with lower premiums, not by punishing undesirable behavior. The wages of sin are rampant in ICUs. If you exclude people from services, you will certainly save money because there'll be nobody left in hospitals except a couple of nuns and a Mormon elder or two. We also have to treat like cases alike and not just punish the sins of the poor or sins we don't like. We can't punish smokers but let skiers off the hook, or people who fill a big hole in their back yard with water so they can have a swimming pool, or who fly a small plane or ride a horse.
MC: How settled is the way we as a society handle end-of-life medical treatment decisions? Are patients and families clear on how to express their wishes, and are physicians and hospitals clear on how to carry out those wishes?
CAPLAN: The issue is still churning. There is tremendous dissatisfaction all the way around with the current approach. It's inefficient, time consuming, and bureaucratically burdensome.
MC: You're talking about living wills and advance medical directives?
CAPLAN: Yes. Physicians don't think they work very well. People don't fill them out in advance, when they're most useful. Patients don't trust medical directives or believe they'll be implemented. Living wills have been one of the great failures of bioethics, which promoted them. Three things need to happen to improve the situation. One, we have to move toward a durable-power-of-attorney or surrogate-decision-maker model. People need to pick a trusted decision maker rather than have to choose which treatments they want or don't want once they're very sick. People don't want to do that, and they tend not to do it well. It scares people. Two, we have to make discussions of death and dying routine throughout the health care system. We don't do that well at all. Three, we have to return to physician-driven decision making and away from the idea that a physician can't do anything until the patient has consented. If doctors think that certain forms of intervention are truly futile and hopeless, they shouldn't have to discuss them. They should tell patients and families, "We're done, this won't work." They don't need to be quite that harsh, but they do have to be blunter than they are now. Right now, physicians are a little afraid, so they think they have to present every option and let families and patients choose. It partly reflects fear of being sued and it's partly a misunderstanding of what informed consent is.
MC: What other failures of bioethics come to mind?
CAPLAN: Bioethics has not made ethics committees work well. There's some disappointment that they've been co-opted by lawyers and turned into risk-management entities for hospitals and managed care plans. They were supposed to empower patients and I don't think they've done that. Our response here at Penn is to bring ethics consultations right to the bedside at the hospital with an emphasis on mediation.
MC: What ethical issues arise from clinical research involving human subjects? In a few cases, subjects who were being paid to take part in clinical research got hurt. Has the shift in the focus of research from academic medical centers to private industry made things worse?
CAPLAN: There have been longstanding headaches in research with human subjects. When the private sector became involved in a big way over the past 10 years, the system couldn't manage them very well. Institutional review boards have enormous workloads and are overwhelmed. Conflict-of-interest rules haven't been clearly laid out, so people are unsure of how to manage those challenges. We rely heavily on informed consent, but we also know from the few studies that have been done that it never works. Most people do not get to the point where they understand technical things well enough to give truly informed consent. We know that but we haven't made the system any easier to navigate. We're not using our technology to improve understanding. We just keep giving out 18-page consent forms and saying, "Good luck to you." That's partly why we've seen scandals proliferate. We're also seeing the results of business ethics permeating medicine. There's a tendency to see business relationships as a part of medicine in a way that wasn't true 30 years ago. We're not used to seeing business attitudes and profit motives on display in health care.
MC: There was the case recently at the Cleveland Clinic where a leading heart researcher resigned over questions about his financial interest in a company that stood to profit from his research.
CAPLAN: Perfect example, and there are oodles of those. But we act like Captain Louis Renault in Casablanca, shocked that gambling was going on as he pocketed his winnings. We have the medical system that we created, and then are horrified when business people make business decisions.
MC: How can we reconcile an individual's right to keep personal medical information private with society's need to use aggregate data to improve care and save money?
CAPLAN: Privacy issues represent some of the toughest challenges for managed care. Databases with lots of information are in private hands, and it's uncertain how they can be used to improve quality of care and achieve better cost containment.
MC: And sadly, efforts in HIPAA to focus on privacy almost give privacy a bad name. People have to sign privacy documents every time they go to a doctor and it seems like every nurse or receptionist dismisses it as ridiculous federal paperwork.
CAPLAN: And so people don't believe they're getting much privacy from what they signed. At the same time there are waivers releasing certain types of data for billing purposes but not enough waivers to let things be done for research purposes. We could get much further if we set up trusted third-party intermediaries to handle anonymized data. It could be along the lines of the Federal Aviation Administration or Federal Trade Commission. We could have a Federal Privacy Commission that could certify data sets and make sure that data remain confidential. People would be more comfortable about using reams of information to understand whether there's a flu outbreak or whether the cost of heart surgery goes down when the work is concentrated in high-volume facilities.
MC: Thank you.