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Rocket Science

by Emily Friedman

First published in the Spring 2003 issue of Health Forum Journal

It isn't only insurance or race or timing. This health care system is just plain too hard to use, even for the privileged insured patient.

She was an African-American woman in her 80s who had suffered previous spells of significant confusion, but she always recovered, so her husband did not think to take her to the doctor. But this time she had been incoherent for three days. He took her to the hospital emergency department on Christmas Eve. She became agitated and was classified as "combative" and unceremoniously dumped into a nursing home without a diagnosis. The nursing home, also condemning her as "combative," informed her panicky family that when her Medicare coverage ran out after 20 days, she would be discharged, whether there was another placement or not.

Her children--all college-educated professionals--didn't know what to do. They asked a neighbor, who works in the field of health insurance, for help. He, in turn, asked another neighbor, an emergency physician, what might be done. It became obvious that no one even knew if the patient, who was hypertensive and had obviously suffered some type of brain injury, was receiving proper medication. But what was proper medication without a diagnosis? If she had suffered a stroke, she should be taking blood thinners, but if there was bleeding in her brain, that was the last thing she needed. The physician who was supposed to be taking care of her was not returning calls.

It took days to sort it all out, with endless traveling back and forth, dozens of phone calls, the downloading of much material from the Internet and repeated requests for the neighbors' advice. In the end, it probably took too much time; the patient ended up back in the nursing home, demented and with a feeding tube down her throat.

In another instance, a professor of public health had become disenchanted with the group practice that supposedly served as his "primary care provider." Physician turnover had been nearly 100 percent in two years; he had been assigned three different physicians in that period. It was impossible to get them to answer the phone; once, after waiting on hold for 10 minutes, he was told that the clerk was too busy to give him an appointment and he should call back some other time.

He called his HMO. After spending the requisite 25 minutes on hold, he asked the customer service representative for help in selecting a new primary care provider. He specifically wanted a physician who belonged to a group practice. She told him to look in the physician directory. He explained that he had done so, but there was no indication in the book as to which physicians belonged to medical groups. Surely the HMO had a list of contracting group practices? As the conversation wore on, he realized that this customer service whiz had no idea what a group practice was. Finally, the young woman said, "Why don't you use my doctor? He's really good!" She was insulted when her client declined the offer.

Desperate for Information

My business card reads "health policy analysis." (That's what I do, not the name of any company.) I am regularly asked by people ranging from the mechanic at my local gas station to executives sitting next to me on airplanes to my neighbors (who include bankers and telecommunications professionals) what they should do about insurance, about sick kids, about flu treatments, about prescription drugs. It's not that they think I'm some sort of clinical expert; for the most part, they know I am not a clinician (if they know what clinician means).

It's just that they can't get the information they need about the health care system. They don't understand how, or if, that system works. They can't get answers to their questions, even when they know what questions to ask. Often, they don't know who to ask, or if they do, that person isn't in. Or isn't answering the phone. Or is waiting for a callback from the health plan. Or doesn't accept Medicaid, or Medicare, or HMO patients. Or is just too busy.

In recent months, two of the best-known people in American health care have published books lamenting the unusability of our system. In From Chaos to Care: The Promise of Team-Based Medicine (Perseus Publishing, Cambridge, Mass., 2002), David Lawrence, M.D., the recently retired chairman of Kaiser Permanente, recounts in harrowing detail what it is like to be the unsophisticated parent of a severely asthmatic child, lost in the health care wilderness, with various physicians writing uncoordinated prescriptions that cancel each other out, the child's allergies not being taken seriously (and her nearly dying as a result) and physicians fighting over which treatment option is the best--and whose patient care turf is whose.

Dr. Lawrence, who has worked for much of his life to promote team-based medicine and medical group practice in integrated systems, observes, "Strip away the professionals, the treatments, the equipment, and the institutions of modern medicine, and one finds that care is organized for an earlier, far different period of history. Medicine began as a craft practiced by independent, autonomous professionals who relied on one another only when they had to.... The same model persists to this day.... Continuing to rely on this timeworn approach in the future carries unacceptable risks to patients and costs to our society. Medical care as it is organized today is obsolete."

In Escape Fire: Lessons for the Future of Health Care (The Commonwealth Fund, New York, 2002), Donald M. Berwick, M.D., president and CEO of the Institute for Healthcare Improvement, tells the equally harrowing story of the ordeal of his wife, Ann, after she contracted a mysterious and debilitating illness. Despite her background as an esteemed environmental attorney and athlete, she, too, ended up in the health care wilderness, even with Don by her side.

He recalls from the early days of her illness, when she was hospitalized: "We needed safety, and yet Ann was unsafe.... The errors were not rare; they were the norm. During one admission, the neurologist told us in the morning, 'By no means should you be getting anticholinergic agents,' and a medication with profound anticholinergic side effects was given that afternoon. The attending neurologist in another admission told us by phone that a crucial and potentially toxic drug should be started immediately. He said, 'Time is of the essence.' ... The first dose was given 60 hours later.... Nothing I could do, nothing I did, nothing I could think of made any difference. It nearly drove me mad."

David Lawrence and Don Berwick are as skilled, knowledgeable, sophisticated and powerful as users of the health care system can be. Yet both have witnessed devastating failures of the system, failures that even they could not prevent. Neither one of them blamed individuals for those failures. Both of them believe that the failures are systemic, that they are the result of the basic inability of a huge crowd of providers and payers (institutional, organizational and individual) to meet the needs of the people they claim to serve.

Impossible to Use

I've had adventures of my own in Health Care Land. So have you. And I think we could easily come to a consensus on this point: This health care system is too hard to use, often to the point of being impossible to use. Those of you who don't like "managed care," whatever that means these days, will quickly say that it's those profiteering blankety-blanks who are conspiring to deny access in order to pocket the premiums without having to pay for care. And in more than a few cases, that is quite likely what is going on.

But most of the patients I have described in this column--and the many others whose tales I could tell--are not managed care patients, and even if they were, one assumes that they could probably shortcut or power their way into what they want and need. If they could. But they can't. Not because of profiteers and their roadblocks, nor because of their insurance status, nor because they happened into the emergency department on a Saturday night, nor because of their race or ethnicity, nor because of bad luck. Even the most lavishly insured, powerful person can be served badly, or not served at all, by this system.

Why? Both Dr. Lawrence and Dr. Berwick offer eloquent answers to that question, as well as providing solutions that would greatly improve our system--solutions that, indeed, have the potential to make it what it claims it is: the best in the world.

But I'm just a policy and ethics wonk, and although I have notions of my own about the underlying causes of how our system became an impenetrable labyrinth, and how it could be improved, I am more concerned, at this point, with the end result of those forces: The health care system is difficult or impossible to use for most people because it is uncoordinated and overly complex, and because people cannot find out how to use it properly. And if people voice complaints about the fact that they don't know how to use it, or that they find it impossible to use, then they are tagged as (and Dr. Berwick notes this in his book) "difficult patients" or, even worse, "noncompliant." Or, in the case of the elderly woman who (as it turned out) had suffered several small strokes, "combative." Get Out of My Emergency Room. GOMERS.

Small Steps

The situation is not hopeless. But the structure of this system will change into a more user-friendly form only when the most powerful forces within that system--employers, physicians, hospitals, payers and policy-makers--decide it is in their interest to change it. Or it will change when patients gain a sufficient hunk of that power to force change. In either case, it is going to take time, perhaps a very long time, given how entrenched some of those power interests are. In the meantime, there are things that the rest of us can do to keep the health care experience from being a living hell for plain old everyday patients.

Be sensitive to their frustrations. Whatever your job, it is likely that on a regular basis you are confronted (on the phone, by fax, by e-mail or in person) by a confused, frustrated, angry patient or family member who needs help. It is probably not the high point of your day when you hear the telltale signs of rage, tears or desperation.

Nonetheless, try to show a little sensitivity. Depart from the prepared script to offer some comfort. I know that when my latest computer blew up after hours of trying to save it on the part of me and my computer consultant, his understanding of my tears meant the world to me. Sometimes, all that is needed is for someone to say, "Yes, I know, this is so difficult. I have trouble with it myself. Keep it together for a little while longer, and let me see what I might be able to do."

Remember the little things. We all know that most health care organizations are understaffed right now, and many staffers are underpaid. It is easy to let the anger and stress allow you to overlook the little things that are so important to patients.

But if you see a visually impaired patient who doesn't know where she is going, or if you hear a non-English-speaking patient trying to communicate with a staff member who doesn't have a clue as to what he is saying, or if you sense that the elderly lady in the waiting room is frightened and tired but afraid to speak up, take a moment to be friendly. Say hello, or point out a direction, or ask if an interpreter is needed, or try to determine what kind of information the person needs, or who he is looking for, or where her appointment is. That doesn't take all that much time, and it makes a world of difference. It helps if you remember the times when you were lost, or frightened, or didn't speak the language, and the people who helped you when they didn't have the time, and didn't have to, but did so anyway.

Be a champion. Recently, I was watching a television documentary about a forgotten criminal case that was solved because the victim's family was unwilling to forget about it, and because one police detective decided it deserved a second look after he listened to their pleas. It took a long time, but they caught the perpetrator. The detective and family were asked how they had succeeded, and one family member said, "You have to have a champion."

I was struck by that, because many years ago, I had the chance to ask one question of the CEO of 3M. I asked him what the single most important lesson of the saga of the Post-It Note was. (I have told this story before in this column; suffice it to say that it took two years for the firm to recognize the gold mine the Post-It Note represented, and that was because one 3M executive kept pushing it.) He replied, "You need a champion within the organization."

Not every patient requires a champion; not every incident requires that you make waves. Some people are just lazy and want to be spoon-fed; others simply like to make trouble; others think they deserve special treatment. But when someone is really in a bad way, when someone is being kicked around by the health care system and doesn't know what to do about it, be a champion. Go to bat for that person and/or her family. Challenge the organization. Try to make the patient or beneficiary or enrollee feel safer, more knowledgeable, more secure. There is no justification--financial, political, ideological or logistical--for allowing people to be afraid of the health care system.

Work to see that good information is easier to obtain. Bruce Vladeck, Ph.D., the former administrator of The Agency Formerly Known As HCFA (now known as the Centers for Medicare & Medicaid Services, or CMS), told me in an interview that when he arrived at the agency, he found that Medicare consumer information activities--the free counseling services that are supposed to be available to all Medicare beneficiaries--were buried so far down in the department that they would have had to look up to see the ground. He changed that, and brought beneficiary counseling back into a prominent position.

On Jan. 25, 2003, The New York Times reported that "Running short of money, Medicare officials have ordered cuts in a wide range of services that provide information, advice and assistance to Medicare beneficiaries. In a bulletin to Medicare contractors, the government told them to halt outreach and education activities intended to inform millions of beneficiaries of their rights under the federal health insurance program." Back to the wilderness.

I do not find it surprising that a group of former Aetna executives have formed a new company, called Health Advocate, whose employees (for around $3 a month per head--capitated, of course) assist workers of contracting employers to "maneuver through the denials, disappointments, and dread caused by health insurers." (By the way, I believe in capitation--I just find this particular transformation delicious.)

Abbie Liebowitz, M.D., who was chief medical officer of the Aetna health plans in the 1990s and is now in the same job at Health Advocate, told The Wall Street Journal, "Who better to deal with the system than the people who created it?" The magnificent and hilarious ironies aside, it is my opinion, at least, that we have come to a sad state of affairs when an entire company can succeed simply because it explains the health care system to hapless patients.

Support system change. The health care system makes patients feel powerless, and it makes many of those who work within it feel exactly the same way. But until we change the infrastructure and the corporate culture of health care, until the fiefdoms and the turfs and the lust for money and the competition and the power positions are broken down, until teamwork replaces individual arrogance and patients replace power mongers as the focus of the system, innocent people will continue to be terrified, humiliated, injured and killed unnecessarily--not because of any individual wrongdoing, but because the system does not and cannot serve them well. One might say the same of a dictatorship or a prison system, but we cannot allow it to be said about our work, our hopes, our goals. We can do better than that, and we must.

This article first appeared in the Spring 2003 issue of Health Forum Journal

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