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Careful — There's a Baby in That Bathwater

by Emily Friedman

First published in Hospitals & Health Networks OnLine, June 1, 2010

The U.S. health care system has taken a lot of hits in recent years, with one result being an erosion of public trust and another being the passage of a comprehensive, complex and potentially very expensive "reform" statute that will change how just about everyone in this sector does business, sooner or later. One question that hasn't been asked very often is, as change overtakes health care, what should be preserved? What's right with our system?

Emily Friedman
Emily Friedman

Slightly more than 30 years ago, as yet another debate over "reforming" the health care system was taking shape, the late Philip Justin Smith, then publisher of the long-defunct (and much missed) Health Management Quarterly (HMQ), asked me to write a piece on a somewhat odd topic: What's positive about our health care system? What is worth saving? We must be doing something right, after all.

I was reminded of that long-ago essay ("To Save and Let Go," HMQ, Third Quarter 1999) recently when a friend contacted me regarding a new activity in her life: She had joined a women's debating society. She called me at the height of the congressional battle over the health care "reform" bill and told me that she and her debate partner had been assigned the challenge of defending the proposition that ours is "the best health care system in the world." She said she needed help and wanted my advice.

There are many ways to address this topic. Should one approach it from the perspective of access? Quality? Outcomes (which can be different from quality, not that anyone is noticing these days)? Technology? Patient satisfaction? Public health infrastructure? Hospitals? Physicians? Health policy? Or just plain statistics?

As policy wonks and analysts tend to go for statistics, that's as good a starting point as any. And, given most international rankings of health care systems, which use generally accepted measures, there is no way we can claim that our way of doing things is the best, no matter how fond of it we may be.

Low International Ranking

In 2000, the World Health Organization (WHO) issued a report on health care systems that ranked ours 37th overall. The report caused a huge stink, and WHO never issued another one (which is too bad). However, in 2007, the Commonwealth Fund released a much narrower study that compared the systems of six developed nations; the United States came in last. Although our per capita health care spending was the highest, we also had the highest rates of death from acute myocardial infarction, respiratory conditions including asthma, and surgical and medical error.

A 2005 report found that although many countries (including Bosnia) had maternal mortality rates of 4 per 100,000 or less, ours was 11. Another study stated that among developed nations, we ranked ninth in deaths from cancer. Our infant mortality rate of 6.7 per 1,000 placed us 34th in the world in 2008. Among Germany, Japan, Switzerland, the United Kingdom and us in 2007, we had the lowest life expectancy.

And that is not even to mention the 46 million (likely well over 50 million by now) uninsured Americans, the estimated 30 million underinsured, and our shocking racial and ethnic (and gender) disparities in health status and access to care.

You get the idea.

So, no, I don't think we can allege that ours is the best health care system in the world, unless you want to confine the definition to access to care for the well-heeled white male few, and even then we fall down on prevention, medical error, other patient safety issues, and appropriateness of care.

My friend was disheartened that I couldn't provide her with very much ammunition. I told her I would think about it some more.

What Worked as of 1989

Fortunately, I am something of a pack rat, so even though the HMQ piece slightly predated my entry into the wonderful world of the Internet, I still have a paper copy. I got it out to remind myself of what I had thought, 20 years ago, was going right with American health care. My main points:

It's not a bad list, although it was somewhat naïve. I underestimated the role of greed, which has been so destructive as a few dozen executives became zillionaires while almost everyone else went without to one degree or another (hardly a unique event). I did not anticipate the perversion of the classic HMO concept by commercial insurers, a travesty that continues to this day.

And although it is still true that some forms of tertiary care — most commonly trauma, burn, NICU and a number of surgical procedures — are available to many, if not most, patients, much of the rest is often denied to those who are uninsured, or underinsured, or are the wrong color, or don't speak the right language, or, sometimes, just don't have interesting-enough or research-eligible conditions (organ transplantation comes to mind). And I overlooked the issue of disparities; our infant and maternal mortality, cancer care and diabetes statistics, parsed by race/ethnicity and income, continue to be appalling.

And Much Is Still Here

Other than that, I was pleased that my two-decades-old views mostly held up. We continue to do a great many things well, not the least of which are the development and/or furthering of cutting-edge research, be it on stem cells (now that certain roadblocks have been removed), gene therapy, nanotechnology, or other new horizons. (We might try to do something about the prices of these new products, however — $93,000 for one course of treatment that adds four months, at most, to the life of a patient with advanced prostate cancer?)

In addition — and we may indeed be the best in the world on this count — we continue to innovate in terms of where and how care is provided. I can't imagine that any other nation performs more than half its surgeries on an outpatient basis so patients can go home and sleep in their own beds. We use telemedicine to aid rural physicians in our own country and around the world. We have pioneered minimally invasive surgery and low-dose radiation. And although we didn't invent hospice and palliative care — indeed, we lagged behind on this for decades, obsessed with our curative model — we have made both services widely available and financially accessible.

I also don't think it can be denied that we continue to be the forerunners in efforts to improve patient safety and quality, even if adoption of proven approaches is slower than it should be, and provider resistance remains a challenge. From the Institute for Healthcare Improvement's efforts to the partnership of Medicare with Premier Inc. on pay-for-performance to the release of massive amounts of quality data on both private and government websites, we seem to be ever more committed to making care better.

I also remain impressed by the introspection of this system; few nations (if any) have a health services research enterprise equal to ours (although, one must admit, research communities tend to take on a life of their own, and researchers seemingly always end their publications with the words "more research is needed," as I have written in this space before). From John Wennberg's ground-breaking exploration of practice pattern variations in the 1960s to today's push for comparative effectiveness research to the lay-it-all-out-for-everyone-to-see reports about where we have loused up and what we could be doing better, we have tried to open up what historically has been a secretive sector.

Yes, everyone freezes when the plaintiff's attorneys come calling, and we still cover up too often for bad doctors and nurses, and the pharmaceutical and medical device sectors still engage in marketing and reporting practices that would make a money-laundering Swiss banker blush, but compared with what I have seen around the world, we do a much better job of scrutinizing ourselves than just about any other nation's health care system. The challenge, as it has long been, is translating our findings into practice — taking what we have learned and using it in the field to help patients.

In trying to explain why he had allowed the financial markets to run amok, former Federal Reserve Chairman Alan Greenspan said recently, "It is easy to look back and see your mistakes, but what is to be gained by endless self-examination?"

Everything, Mr. Greenspan; everything.

The Gift of Patients' Rights

So I was right about a lot of it. But back then I neglected to mention two areas where the U.S. health care system really has been a shining light. The first is the area of patients' rights, which were largely pioneered and certainly flowered here. Elisabeth Kübler-Ross's 1969 bombshell, On Death and Dying, led to a society where the five stages of grief became an accepted way of dealing with the incomprehensible. The 1973 publication of Our Bodies, Ourselves by the Boston Women's Health Book Collective was a massive challenge thrown in the face of a male-dominated system (although I still think the concept of the do-it-yourself pelvic exam went a bit too far). Gay Men's Health Crisis in New York City and the Shanti Project in San Francisco made it clear to the Reagan administration that even if it wanted to ignore the incipient AIDS epidemic, the gay community would not. The Black Women's Health Project, founded in 1983 by Byllye Avery, gave voice to a highly vulnerable population. Through the various elements of this movement, we came up with birthing centers (and men could actually attend the birth of their children, which was once forbidden), alternative and complementary approaches, even medical marijuana (whatever I think of it, which isn't much — it's really bad for your lungs).

But perhaps our greatest contribution to the patients' rights phenomenon was the promulgation of the living will — now usually called an advance directive — through which terminally ill patients, who once had no choice but to die in the ICU amidst a jungle of tubes and needles and machines, often still receiving futile treatment and often without their loved ones around them, could determine the circumstances of their last days.

Yes, euthanasia is allowed (if not legal) in some countries, and yes, it's much more efficient than letting the dying choose for themselves, but it's hardly moral if performed without the patient's request — which it often is. And the debate in this nation over physician-assisted suicide (the legalization of which I oppose) is extremely healthy, no matter how widely the practice spreads (or doesn't).

An advance directive is a different kind of puppy. It says, "This is how I want to leave this world, and you have to respect my wishes." Sometimes, patients want the works, and although this is often wasteful and painful, that is their right, within the bounds of clinical futility. Most of the time, however, they opt for being comfortable and pain-free, at home or in hospice, surrounded by their loved ones, and dying as they have lived, if possible. Of the dozen or so close friends of mine who have died in the past five years, more than half ended their lives peacefully in hospice. That sure beats how my stepmother died, in an ICU, tethered to every possible piece of technology, suffering greatly — and far beyond any hope of cure.

One of the two gifts our flawed health care system has given the world is acceptance of and heeding the rights of the patients who are supposed to be the point of the exercise.

The Bedrock of It All

Finally, 20 years ago I missed the most important thing, the one characteristic of this health care system that, above all, makes it so wonderful even when many of its parts aren't working. This is not a unique quality, but it is still our most precious trait: the dedication of all the folks who, as a physician assistant friend of mine likes to say, "touch patients," who selflessly work overtime, who toil in emergency departments where more than a few have been threatened or shot, who treat a gangbanger with the same professionalism and compassion they would show to a frightened toddler.

A colleague of mine, an eminent emergency physician, recently had to leave an important meeting to cover for one of his fellow trauma surgeons. He did five appendectomies (mostly on uninsured patients who likely could have paid something toward their care), and finished off by removing a bullet from a gang member. He groused about it a little, but it would never have occurred to him to do anything less than his very best for his patients, no matter who they were.

In the end, it isn't our pretty hospitals, our skilled (if sometimes overly obsessed with finance) executives and administrators, or our fancy technology that make us singular. It certainly isn't our super-tertiary specialty programs and Swiss-cheese access policies, which allow Steve Jobs of Apple to become a domestic health care tourist in order to procure a liver while the homeless die in the gutter, that make our system remarkable.

No, it's the people who work in it, on the line, every day, in the emergency department, in surgery, in the kitchen, in housekeeping, in security, in finance, in the parking lot, in the dementia wings, in the underfunded nursing homes, in the community health centers (making a dozen calls to try to find some hospital to take a mentally ill homeless person who has cancer), in admitting, in every nook and cranny of every place that offers the promise of healing.

There was a time in my life — just about 40 years ago — when I was the night, weekend and holiday lab-slip delivery girl in a big urban hospital. That job no longer exists; fortunately for the quality of care and the sanity of the nursing staff, computers have come to our aid. But back then, I made the rounds every couple of hours, as test results had to be reported and distributed and pasted into the patients' charts.

On Christmas Eve of that year, I went back down to the lab to take a break and get a cup of tea. I was surprised to find Andy, the senior blood bank tech, still on the job. I knew that he was married and had a family. I asked him what on earth he was still doing at work; his shift had ended hours before. He said that an injured child had been brought in who needed a transfusion; the kid had an unusual blood type, and he was typing and cross-matching every pint of blood we had on hand to see if he could find one. He found it on the 47th try. He went home shortly before dawn on Christmas Day.

There are people like that in every hospital, every medical practice, every clinic, every health center, every nursing home, every assisted living facility, every hospice, and every other health care setting in this country. And it is they, above all, who make this system great.

It will be critical, as we move through the changes that are coming, that we not lose, exploit, or pervert what is good about what we do, and that we save what should be saved. There will be great enthusiasm for change for change's sake, and everyone will have wonderful ideas about how to redo everything. It will be imperative, in the face of those juggernauts, that those who know what must be preserved fight to keep the baby from being thrown out with the bathwater — a fight that must be free of financial considerations, ego or even tradition that is not productive. What is good about our system took too long to create, and cost too much financially and in terms of suffering, for us to toss it out with the day's recycling.

My friend lost the debate. And Andy, wherever you are, this one's for you.

Copyright ©2010 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 Weekly and a member of the Center for Healthcare Governance's Speakers Express service.

First published in Hospitals & Health Networks OnLine, June 1, 2010


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