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The Ethics of Change: Making the Right Decisions in a Shifting System

By Emily Friedman. First published in Hospitals & Health Networks Daily on October 2, 2012

Emily Friedman

Ever since the Patient Protection and Affordable Care Act was proposed in 2009, folks have been asking me when I would write something substantial about it. I have lectured about it many times, but refrained from writing anything much, simply because many talented people were writing very intelligent and insightful analyses to which I had little to add. So I figured I'd wait until the dust settled and see if there was anything left to say.

I guess, for the record, I should provide a summary of my perspective on the ACA. Frankly, I wasn't crazy about it; I thought it was too big and broad, covering way too much territory, and had parts that were not very well-thought-out. That hardly makes it unique; all policy is the product of compromise, and all laws need some degree of tweaking and retooling after the fact. Nonetheless, it was a big meal to try to digest.

If I had my druthers, I would have focused on insurance issues — particularly coverage of the uninsured, the cost of insurance and discrimination against the sick — and left much of the rest of it to other bills. I'd always thought that this is a second-term issue for the presidency, in any case, but there's always the danger that there won't be a second term. Probably for that and other reasons, the framers threw everything, including the kitchen sink, into the ACA.

And in the end I supported it, for the simple reason that it outlawed insurance discrimination against the sick, which I have always thought was one of the most inexplicable, destructive and downright cruel aspects of our health care system. Those protection provisions, most of which go into effect in 2014, in my opinion could prevent our private insurance sector from self-destructing by hanging onto discrimination as a business plan when the population is aging and information about personal health status is easier and easier to obtain. I must say, it's ironic that it may take government action to save the private insurance sector from itself. I don't want to see a single-payer system in this country — I think we would make a complete hash of it — but the status quo simply cannot hold.

Supreme Court Ruling

Furthermore, like most observers, I guessed wrong about what the Supreme Court ruling on ACA would be. I assumed Justice Kagan would want to uphold it — after all, she had defended it when she was solicitor general in the Obama administration (and those who thought that both she and Justice Clarence Thomas, whose wife has been heavily involved in seeking to overturn the law, should recuse themselves, were probably justified in their criticism). I also assumed that Chief Justice Roberts would be opposed to the law, and Justice Kennedy would be the swing vote.

I further thought that using the Commerce Clause of the Constitution to require the acquisition of private insurance was a stretch — historically, the clause had been used to prohibit behaviors and practices (such as racial segregation) on the part of those engaged in interstate commerce, not to mandate purchases. On the other hand, many states require that car owners and drivers purchase auto insurance. And from what I know of Public Law 89-97 (the statute that created Medicaid, which I have been studying for decades), the expansion of that program was legal and in keeping with past policy and practice.

That just goes to show how much I know. Justice Kagan advocated overturning the law, Justice Roberts supported most of it, the required purchase of private coverage was upheld through what might be considered rather tortured logic, and the states were allowed to opt out of the Medicaid expansion without giving up participation in the program entirely.

I did know that there would be winners and losers, from commercial insurers (who started out supporting the bill and then switched horses in the middle of the debate) to states whose leaders felt their rights were being trampled — a common sensitivity when it comes to Medicaid. As things stand at the moment, I feel that hospitals, especially, were betrayed by the court decision, in that they accepted lower Medicare reimbursement in return for a higher number of insured people, which may or may not come to pass because of uncertainty over how many states will participate in the Medicaid expansion.

However, I believe that despite all the posturing and blustering, and assuming the law will remain in effect after the November election — and I think it will — most states will take the Medicaid expansion money, complaining all the way to the bank. There will be federal subsidies to absorb the increased spending in the early years, and the feds have indicated that the states will be able to cut their programs later on, so I think the very public fight over participation in the mandate may be more political theater than anything else. A few governors may refuse to play for ideological reasons, but I think they will be a small minority.

And much of this will remain unsettled until we see what happens with the election, in terms of the White House, Congress, governorships and the makeup of state legislatures.

Ethics Issues to Consider

So, all that said, the question is, after three years of everyone feeding on this issue, and with the health policy tummy being filled with all kinds of fodder, what is there left to say? Could anything have been overlooked?

Yep; the ethics of it all — you know, doing the right thing, following the high road, putting patients first, all the stuff we engrave on our lapel pins. There hasn't been a whole lot said about how we might go about redoing major aspects of our health care system in a responsible, conscientious and moral way.

This is not an unusual omission — ethics tend to be an afterthought in health policy discussions, if they come up at all — but in this case, I think how and why we effect change will have a great deal to do with whether we succeed.

So here are a few ethics issues we might consider as we travel these new roads:

Informed consent. We're doing better in terms of informed consent when it comes to participation in clinical trials — it's been a long time since the Tuskegee crimes — although I still think we have quite a way to go before we can be confident that participants in trials are fully informed and have made their decisions of their own free will.

But there is a question of whether informed consent should be required for participation in "health policy trials," if you will — such as accountable care organizations, Medicaid managed care and other nontraditional arrangements. Professor Mark Hall of Wake Forest University brought this question up 20 years ago when he asked if informed consent should be required for patients who were likely to be subject to rationing decisions, an issue that essentially was embedded in the switch to tight managed care networks, many of which soon went down in flames over choice and access to care. I don't know that he ever got a satisfactory answer.

Those who support ACOs point out that in the Medicare models authorized by ACA, although patients are enrolled without their consent, they can opt out, go out of network and so on. Yes, but I also know how information can be hidden — you should have seen the search-and-destroy mission I had to undertake recently to require my insurer to send me bills rather than allowing it to invade my bank account. There was a teeny-weeny box that had to be checked on page five of an eight-page application.

There are many ways to avoid providing adequate patient information and even rudimentary informed consent, and I hope that those who are in the forefront of the changes the system is undergoing will not engage in them. This is particularly important in mandatory Medicaid managed care, and within that milieu, the enrollment of Medicaid dual eligibles — people who are so sick and so poor as to qualify for both Medicaid and Medicare — in managed care without their having much, if any, say in the matter.

Medicaid beneficiaries, historically, have been the lab rats of health policy experimentation, and that is neither fair nor defensible. Just because they are poor does not mean they checked their rights at the door.

If the changes we are attempting to implement are an improvement, we should not be hiding them from those who will be affected most.

Denial of access to needed care. Another concern, which is related to the preceding one, is whether, in the gold rush toward ACOs and the movement away from fee for service, we will slip into repeating the managed care wars of the 1970s and 1980s. That is to say, if there is money to be made by keeping patients away from care, someone will try to make that money.

Please don't get me wrong; I think this country suffers from, in the words of Kaiser Permanente CEO George Halvorson, an "epidemic of care," in which, because of profit motive, patient demand, fear of malpractice litigation or just plain old-fashioned habit, providers overtreat and overmedicate many patients. That's leaving aside the performance of expensive and often risky procedures on patients who don't need them, which is fueled by nothing more complicated than good old greed.

At the same time, although there is a great deal of room between overcare and undercare, history tells us that our pendulum tends to swing from one extreme to the other, often not bothering to stop in the appropriate middle ground. Part of the reason for that, of course, is that for most of our history, we didn't have evidence-based medicine, comparative effectiveness research and other tools that help us know when to start, when to stop and which road to travel. But we have at least some of those tools now, and their use must be part and parcel of the implementation of our new systems.

Repeating the clumsy practices of the past, rather than using the science we now have available, is to turn our backs on the revolution in quality improvement to which we all say we are committed.

Let us take a lesson from Goldilocks: Try to use what's just right for the patient, and configure payment systems to reward that.

Avoiding discrimination. I'm old enough to remember the days of really gross insurance discrimination, such as the insurer at the beginning of the AIDS epidemic that instructed its agents to avoid men who worked as florists, interior designers or in the theater. I was tempted to suggest that they send those agents into some of the gay longshoremen's bars in San Francisco and see how well their stereotypes played there.

Discriminatory practices remained pretty crude for a long time, such as door-to-door salesmen seeking to enroll low-income Californians in cut-rate Medi-Cal HMOs in the 1970s and being instructed to avoid pregnant women or anyone who appeared to have a disability. And, as epidemiological patterns of AIDS began to emerge, marketing (or not) by ZIP code became commonplace.

Avoiding certain populations has become far more sophisticated these days, but it has not left us. We still must live — at least until we see if ACA has teeth in this regard, and we won't know that until 2014 — with the concept of someone being deemed "uninsurable," which is hogwash. Although the argument often is made that much illness is a patient's own fault (that's a whole 'nother discussion) because of smoking, obesity, dietary choices, sedentary lifestyles, sexual practices and the like — it's difficult to argue that someone brought Parkinson's disease or Alzheimer's or type 1 diabetes on himself or herself. And these patients are not uninsurable; it isn't that insurers can't cover them, but rather that they won't.

Our insurance system has been based on risk avoidance, not risk management, and now that all the signs are pointing toward risk management as the future, many insurers are loath to give up the old way of doing things. The problem is, it's an indefensible way to run a health care system. In my international travels, the two questions I encounter the most, and the two I have the most trouble trying to answer, are the same: Why doesn't everyone have health insurance? And why does your country allow discrimination against sick people?

There aren't any reasonable answers to either question.

With more and more personal health information available, it is even easier these days to learn (legally or not) if someone used tobacco at one time or had a cheeseburger last Thursday or has a family history of depression. I cannot help but fear that, even if the protections in the ACA are enforced, our system will continue to try to avoid those who need it most, and will not give up the blame-the-victim mentality that characterizes too many coverage decisions.

Of course, good health practices should be encouraged and self-destructive practices avoided, but treating the sick as though they are lepers solves nothing. The population is aging, environmentally caused diseases are being identified (to wit, the federal government now will cover the cost of care for cancers that first responders probably contracted as a result of working at ground zero in New York City), and even those who maintain optimal weight, eat their vegetables, don't use tobacco, use little or no alcohol, and generally are good boys and girls, will sooner or later get sick. As Nobel laureate Rene Dubos wrote more than half a century ago, everyone dies of something. Treating those at risk of Alzheimer's as somehow being more "deserving" than those at risk of tobacco-induced lung cancer is a useless exercise; it is not for caregivers to judge. Ask any emergency department clinician — you treat the victim, you treat the shooter. That's why you took the oath.

That should apply to all of us in health care, no matter our role.

Disempowerment. One of the reasons that the first round of hospital acquisition of physician practices produced so many failures several years ago was that hospitals did not know how to properly price what they were buying. But another reason was that, in too many cases, there was a hidden agenda of disempowering physicians.

One can understand the temptation; physicians are not known for their manageability, and whether you support their claims of clinical autonomy, even clinical sovereignty, or not, I think it's safe to say that most doctors would prefer to run their own professional lives, individually or with the camaraderie and assistance of other physicians. Too many hospital leaders had the idea that by buying the practice, they were buying control of the clinicians, and that didn't work out very well.

Power shifts occur all the time in health care, although most of the big ones tend to be subterranean and long-term, like the slow movement of tectonic plates that eventually results in earthquakes. Historically, physicians were the unquestioned kings of the system (and, with less than 7 percent of doctors being women until 1970, kings is the proper term); then hospital leaders gave them a run for their money, then payers slowly but inexorably took control, and in more recent days, it's been something of a free-for-all. Most parties involved tend to agree that the regulators are the true power-hungry villains, when often they have little or no clout in the real world.

With all the new configurations that are emerging, only a fool would predict with certainty what the resultant power arrangements will be. It's possible, once the smoke clears, that physicians once again will reign supreme, nurses will have less power than they should, payers will have lost ground, hospital leaders will be caught between clinicians and payers, and regulators will flex the occasional muscle.

But the lines are blurring. Insurers are forming ACOs with providers (the fight over the spoils should be interesting). Providers offer insurance plans. Nurses fill the gaps left by the shortage of primary care physicians. Payers seek to lay off risk onto providers (not for the first time). Employers are contracting directly with health care systems. Regulators, especially those who combat Medicaid and Medicare fraud, are showing renewed strength.

It is naive to think that we will heed the late Rodney King's advice and all get along. But I would like to believe, as the situation becomes clearer, that the one group left out of the smackdowns described previously might glean at least some power, and that is patients. I believe quite firmly that they will get it; the question is whether that will happen peacefully, or whether it will be the endpoint of yet another ugly chapter in the long history of health care power struggles.

Scope of practice issues. Any observer of the field, no matter how far removed, knows that seismic shifts are taking place in clinicians' scope of practice. The shortage of primary care physicians has opened the door for nurses, physicians' assistants and pharmacists, who are offering primary care services. Meanwhile, various medical and nursing specialties are trying to expand their scopes, largely in pursuit of lucrative technologies and niches. This is an old story, and as long as those involved are competent to provide the services, I can't say it's keeping me up at night; let the guilds try to protect themselves. I'm not very big on exclusionary guilds.

The ethics question is whether scope of practice will be adjusted because of a shortage of qualified practitioners, the presence of other qualified practitioners, or because one type of clinician is cheaper than another. Clinical competence should not go by the wayside because another, less expensive practitioner claims that he or she can do the same job. Sometimes they can; sometimes they can't. With so much at stake, the questions are simple but critical: If the task is beyond your expertise, will you admit it? And who will judge competence? Traditionally, specialties have judged their own, but if their authority extends to others whom they perceive as trying to horn in on their turf, can they be objective? Do we need a referee here and, if so, who should it be? I would hate to think it would be the plaintiff's bar.

For-profit vs. nonprofit and the new hybrids. I have long been interested in the issue of for-profit vs. nonprofit enterprise in health care or, more specifically, the role of publicly held firms in the provision of health care. I would prefer that health insurance be a nonprofit activity, but that cat has been out of the bag for so long that I doubt we could even find the bag, let alone stuff the cat back into it.

In the direct provision of health care, however, the question remains highly pertinent, especially as we see new configurations that combine nonprofit and for-profit entities. Catholic health care is wrestling with this as faith-based providers are sold to publicly held firms; counties and municipalities are courted by for-profits seeking their hospitals; physicians are tempted by incentives to align with certain provider organizations and refer to them, Stark or no Stark.

Meanwhile, the string of scandals continues, whether it is for-profit hospital upcoding, creative billing practices by hospitals and acute long-term services housed within them, provision of lucrative but unnecessary care in what appears to be systemwide policy on the part of some for-profits, or questionable quality of care in nursing homes owned by publicly held chains.

The history is unpalatable, the patterns unsettling, the tawdry stories frightening. This is not to say that the nonprofit sector is as pure as the driven snow; indeed, state attorneys general have demonstrated in Illinois, New York state and elsewhere that nonprofits are perfectly capable of questionable behavior, be it unjustified billing practices or avoidance of indigent patients in moral violation of their tax-exempt status. Furthermore, many nonprofit organizations have for-profit subsidiaries or partners; these lines, too, are blurring.

But the question is still worth asking: Can an organization whose legal and fiduciary duty is to maximize profit for stockholders provide the highest standard of care? Are the incentives to do otherwise too strong? Or is this cat, too, so far out of the bag that it doesn't really matter any more?

End-of-life issues. There is nothing new about controversies in end-of-life care. I remember, a good 20 years ago, hospice and living wills being listed in an article as effective cost-containment mechanisms. Well, wasn't that special?

My previous comments about overcare and undercare double for people who are very old, very frail, very sick and at the end of their lives. Although we have made impressive progress in terms of both palliative care and hospice — virtually all of my friends who have died in the past few years did so in the shelter of hospice — there are still providers who would perform an organ transplant on a cactus and would not refer a patient who is still breathing (even if she is doing so with an assistance device) to hospice, because there might be one more thing they could try. I have seen instances of patients who have insisted on being referred to hospice being chased down the street (figuratively) by physicians who want to enroll them in clinical trials that offer almost no hope of success.

And not everyone in this country has a living will, which is incomprehensible to me, especially after the Teri Schiavo case. She was in her 20s when she was stricken; profound disability is not reserved for oldsters.

But in the context of reform, I can't help but remember that article listing those end-of-life options as handy cost-containment devices. Such thinking is very troubling. A well-known physician who was advising the Obama administration until fairly recently has published more than one article suggesting that elderly patients should be at the end of the line if a health care service or product must be rationed, and that the young should have priority, because, after all, the old have "had their chance." If that isn't ageism, I don't know what is.

One of the reasons I wish I were younger is so I could watch some of the pundits who hold these views age, and when they hit 65 or 70, ask them, "How do you feel about that now, turkey?"

How we die is a matter of personal choice — informed, one hopes, by the best of clinical science and advice — but not a matter of health policy. Knocking off people who are too old to be convenient, as chronicled in the films Logan's Run and Soylent Green, should stay in the realm of science fiction.

I hope we use hospice more. I hope the quality of hospice gets better. I hope more patients receive palliative care earlier so that the twin devils of pain and depression can be brought under control. I hope that stupid, often inhumane and unnecessary treatment of the dying will end.

But these are not ledger items in the Great Book of Health Reform. These are personal and clinical issues, and they should not be trotted out as easy fixes in this youth-obsessed society.

Privacy and security of personal health information. In my opinion, there is almost nothing about the health care information technology revolution not to like. From identifying rogue prescribers to alerting clinicians to drug interactions to keeping patient information available even in the face of disaster (see my April column), the digitization of health care is a very good thing.

But it opens the door to a host of evils, from identity theft to prying into personal patient records to tampering with those records to making the discrimination I discussed earlier easier to accomplish. Unfortunately, the day doesn't go by in these times when some laptop containing thousands of sensitive patient records isn't stolen out of an unlocked car (and who leaves a laptop in an unlocked car, anyway?), or an identity theft ring doesn't hack a hospital's unencrypted records, or someone doesn't "accidentally" post the HIV status of thousands of people online (I mean, how "accidental" can that be?).

We have never taken patient information privacy and confidentiality particularly seriously — the best we could do, years ago, was falsify medical records, which is hardly a solution — and it would seem that, as more and more information becomes available, we still have not learned our lesson.

It doesn't matter if there isn't anything juicy in one's medical records — mine would likely put an insomniac to sleep in short order. It doesn't matter if the law says insurers won't be able to discriminate any more. It doesn't matter if prospective employers choose not to nose around in a potential employee's personal health information to find out if he or she might turn out to be an expensive hire. The information belongs to the patient. Simple as that. As patients, we must give permission for certain people and entities — clinicians, payers, public health and law enforcement folks under some circumstances — to examine them, but only for patient care, public protection and payment purposes, not for witch hunts, subtle discrimination, risk avoidance or prurient interest in whether someone ever had an STD.

HIPAA contains strong privacy protections, most of which have been gleefully ignored. The economic stimulus package and ACA also support protection of private patient information. But unless and until those who have access to that information really work to protect it, and those charged with keeping it confidential flex their muscles consistently and powerfully in pursuance of that obligation, that information is at risk. And that means we are all at risk of losing, if nothing else, our basic human right to privacy.

Thinking communally. I have always enjoyed speaking at meetings of medical group practices, because when I get into the elevator, all the attendees say hello, whether they have heard me speak or not. That's because theirs is a culture of communality — I could be a new colleague they haven't met yet.

Many of our new arrangements are driven, to a high degree, by the idea of shared practice, shared goals, shared priorities and shared information in the service of improving the health, not just of individuals, but also of population groups and entire communities. For some providers, there's nothing new about that; they have worked for years to care for everyone in their service areas. For others, this is big and not necessarily welcome news.

Ours is an individualistic culture. Our health professions are rife with individualism. If you want to be cold about it, the marketing unit is one patient at a time. If a patient can't afford the tab, he or she can go elsewhere. I set the rules. I pick and choose.

The $64,000 question (for those of you who remember the game show of that name from the late 1950s, that's about $509,000 in 2012 dollars) is whether, with all the changes we are undertaking, we can shift our focus from the individual to the group, on the provider side and in terms of how we perceive patients. Can we really form ACOs that are legitimately — indeed, passionately — committed to improving and maintaining the health of several thousand people at a time? Can physicians embrace medical group practice as a positive move, rather than as a necessity born of changes in payment policy? Can we really commit ourselves to population health, meaning, as it does, that it isn't just this single melanoma or that single COPD, but also poverty, home safety, violence, food and all kinds of social contributors to ill health? In other words, can we, to quote Mitch Greenlick, a pharmacy professional who is now a member of the Oregon legislature, learn to love n — the epidemiological symbol for a population?

I don't know. I really don't. But we all have a whole lot riding on the answer. It will require culture change. It will require new levels of tolerance and understanding. It will require broad collaboration. It will require a shift in world view. It will require a payment system that is compatible with the new practices.

But we are not without models; they can be found in other countries, and in our own, often neglected public health systems, which learned to love n a long time ago. You don't stop an epidemic or identify a new pathogen by looking at one patient at a time; you have to look at patterns, at groups, at populations. I hope the rest of us can learn to do so.

But in a system that has committed itself so thoroughly to competition and selectivity, it's a very tall order.

Ethical leadership. Finally, will we have the ethical leadership to ensure that these profound changes in our system do not end up being a bloodbath? Leaders in all sectors of health care are retiring, and with many of them is going what some consider to be the quaint idea that health care is for patients, first and foremost. Will succeeding generations of leaders understand that ethics are not a frill, that morality is not optional, and that being able to justify one's decisions on ethical grounds as well as fiscal ones will be essential to success?

We are treated almost daily to lack of ethical leadership in our financial sector, as the most powerful among us fail to heed even the most basic, fundamental precepts of ethics, such as: When people trust you with their money, you should make at least a halfhearted attempt to protect it, and, if possible, grow it.

Accountability has become equally rare; as scandals erupt, some lower-level trader or regional vice president is sacrificed, and the CEO smilingly tells the press that he takes full accountability — and a $23 million bonus. Ships may be sinking all around him, but his has been raised to a new level. One is reminded of James Garner's words in the film The Wheeler Dealers: "Money's just how we keep score."

I hope that isn't how we will keep score in the health care system that is emerging. I hope we don't have CEOs, COOs and CFOs driving around in cars bearing bumper stickers that read: Born to cash out. I think we can do better than that. No, I know we can do better than that. And I don't think we need regulatory threats, payment incentives, or an angry public demanding that we do. I believe that we have it within ourselves to provide ethical leadership, to be a beacon in a society where many people don't know whom they can trust any more. I believe that we can have health care leaders who are able to say honestly and with commitment, "You can trust us."

And if we do say that, and if we mean it, then our new system will be a source not only of innovation, but also of compassion and hope. I cannot imagine aspiring to create anything more wonderful than that.

Copyright 2012 by Emily Friedman. All rights reserved.

Emily Friedman is an independent writer, speaker and health policy and ethics analyst based in Chicago. She is also a regular contributor to H&HN Daily and a member of Speakers Express. The opinions expressed by authors do not necessarily reflect the policy of Health Forum Inc. or the American Hospital Association.

First published in Hospitals & Health Networks Daily on October 2, 2012


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