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H&HN Daily

The Sounds of Silence: Are Patients Getting the Information They Need?

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There is a massive effort under way to empower patients by providing them with better health care information. But do they understand the data? Do they actually use them? It would be a shame if the push for informed "patienthood" became a party to which few patients come.

During a physical exam, the physician started probing a particular area of the patient's upper chest. Not wanting him to be concerned, the patient advised him that an obvious bruise was the result of a recent mammogram. "That's not what I'm looking for," he replied. "What are you looking for?" She asked.

The physician did not reply.

This is supposed to be the Age of the Empowered Patient. Websites of all kinds offer evaluations of hospitals, physicians and other providers. Data reporting — mandatory and voluntary — is producing heaps of information that patients are supposed to use in their health care decisions. Initiatives such as patient-centered care, accountable care organizations, report cards and high-deductible health plans all are designed to make patients more involved in their care, in the hope that having "skin in the game" (financially or otherwise) will lead them to make more rational choices. Shared decision-making by patients and providers together is all the rage among the pundits and theoreticians.

Is It Working?

But how well is all this working in practice?

We are certainly not short of sources of information; Carolyn Clancy, M.D., director of the Agency for Healthcare Research and Quality, estimated last month that there are more than 150 public websites offering data on providers. The U.S. Department of Health & Human Services offers its "Hospital Compare" websites, which report some outcomes data on physicians, hospitals and nursing homes.

However, these are not the easiest sites in the world to use. The opening screen invites you to fill in your postal code and "find" a hospital or physician, which leads one to wonder if it's a data source or a provider locater. Even if you can figure out how to compare a few hospitals or physicians, the information is pretty vague ("no different from the national average"). But for an unsophisticated user, even this language may be difficult to understand. And is the national average for a given outcome a good benchmark?

The AHRQ also has launched an initiative to improve health literacy and patients' use of available data, including radio and television spots. Written materials advise patients that "your doctor wants your questions. Doctors know a lot about a lot of things, but they don't always know everything about you or what is best for you … . That is why they need you to speak up." Unfortunately, that is not true of all physicians.

The AHRQ also offers a list of 10 questions it suggests patients ask their physicians. They include:

  • How many times have you done this procedure?
  • Why do I need this treatment?
  • Are there any alternatives?
  • Which hospital is best for my needs?

Many physicians, especially older ones, might take some of these questions very much amiss — whether they should or not. And the last question ignores the fact that in this age of closed physician panels and PPOs, patients do not necessarily have free choice of clinicians or hospitals. Although Medicare patients have more options, some Medicare Advantage plans limit them.

The Joint Commission has launched its Speak Up initiative, which includes placards for hospitals to display and a variety of materials for patients. The campaign's advice for patients: "It can be difficult to understand what your doctors and other caregivers are telling you about your care and treatment … . Tell the doctor you do not understand. Ask more questions to help the doctor understand what you need."

Among the suggested questions:

  • "Is there someone who can help you understand your doctor, nurse and other caregivers?
  • "Is there someone who can help you understand how to take your medicine?"

One would think that the "someone" would be the physician, nurse or pharmacist involved in the patient's care.

Nongovernmental Efforts

There is also a plethora of report cards on physicians and hospitals; the data are of varying quality. A Commonwealth Fund study published in the March 2012 Health Affairs (the issue is devoted to public reporting on quality and costs) addressed the pitfalls of this approach: "Publicly available report cards on the quality and cost of physicians and hospitals have proliferated in recent years. While consumers say they value this information, it can be difficult to understand and use and, to date, has had minimal influence on consumers' choices."

Participants interviewed for the study identified six factors making public reporting and patient use of health care information difficult, if not impossible:

  • lack of consumer readiness and engagement;
  • opposition from providers;
  • lack of funding;
  • political obstacles;
  • insufficient data infrastructure;
  • inadequacy of current measurement science.

Addressing these problems is not likely to be a walk in the park.

In addition, many insurers' websites contain some data about providers (if not about insurance in language anyone other than an actuary would comprehend).

And more than a few entities outside of health care have joined the fray, from the list of "America's best hospitals" published annually in U.S. News & World Report to health care articles (and, sometimes, exposés) in Consumer Reports to evaluations by patients (and others) on Angie's List. In terms of the latter, of course, objectivity and even fact may go by the wayside. I was disappointed to learn from a television documentary recently that hotels, restaurants and other hospitality services that are rated on TripAdviser often are hyped by public relations firms that are paid to post glowing reviews, or are victimized by competitors who write negative evaluations.

With the democratization that the Internet has created, everyone's a critic.

And there is a good bit of voluntary reporting of data by hospitals, which tends to be self-congratulatory. There is nothing surprising about this; although we are all glad to crow when we win a contest, few of us are going to post on our websites that we came in last.

How reliable is much of this information? That's all over the place. Some is rigorously risk-adjusted and scrutinized before it is released, some is raw and unexamined, and a great deal of it is shaded (or falsified) by those who have a stake in the outcome. If it's difficult for many patients to decipher straightforward information, negotiating the ever-expanding labyrinth of conflicting data on the Web can be impossible.

You Just Don't Understand

So there is an avalanche of information available. But is it what patients want and need? And how easy is it for patients to get access to what they consider important? Unfortunately, not as much as many people would like.

"Communication breakdowns," Paul Schyve, M.D., senior adviser to the Joint Commission, said in 2008, "are the most common root cause of health care errors that harm patients." Too often, that can include breakdowns in communication between patients and providers, not just among providers.

As comedian Joan Rivers has been known to ask, Can we talk? In many instances, not really.

For one thing, in an era of phone menus and websites that seem designed to keep us from communicating with a human being, just trying to get a response from a provider can be a trial.

A colleague of mine, who already was being seen for what could have been a serious condition, had a sudden onset of symptoms that terrified him. He called his physician and reached a recording that told him to leave a message. Over the next two days, he called five times before he was able to reach a human being. And that was because he finally caught someone in the office; his calls were never returned.

A phone menu that answered my call to a physician who was supposed to be treating me told me to leave a message, and that "if the doctor doesn't call you back, go to the closest emergency room." That should keep costs down.

Even if you can get through to the physician or hospital, that doesn't mean that the information you are seeking is available. It can take days for results to be posted, if they ever are. Often, you are told to talk to your physician, who may or may not want to divulge them.

Speaking in Tongues

But let's say that you are able to get through to the provider and the information you are seeking is available. The question is whether the average patient understands it. That can go double for instructions on taking medications, post-procedure requirements or other physician recommendations.

As Laura Landro wrote in The Wall Street Journal on July 6, 2010, "Nearly nine of 10 adults have difficulty following routine medical advice, largely because it's often incomprehensible to average people, the Centers for Disease Control and Prevention says. Confused by scientific jargon, doctors' instructions, and complex medical phrases, patients are more likely to skip necessary medical tests or fail to properly take their medications, the agency says." She went on to describe several efforts by the federal government and hospitals to demystify the jargon, sometimes through the use of computer software that identifies difficult words and phrases and suggests more comprehensible alternatives.

These challenges often are more trying if the patient's first language is not English, or if he or she can't read. I remember, years ago, when the first refugees from the Cambodian auto-genocide began to arrive in the United States. One provider went to a great deal of trouble to translate patient information materials into Khmer — until someone explained that the refugees were illiterate in Khmer as well as English. Most of the people who could read had been killed.

Even those with a good command of English and a decent education can have problems because of poor health literacy. I have learned over the years to read my blood work orders, and I can usually figure them out, but then, I grew up in a pathologist's family and worked in three hospital labs in earlier times.

We Just Can't (or Won't) Tell You

Recently a friend of mine who has spent months dealing with a debilitating condition (the result of medical error, I might add) made what has become a weekly (or even semiweekly) trek to his designated health care facility for yet more blood tests — only to find that the order for the tests had either been lost or had never been posted on the provider's highly vaunted IT system. The same thing happened to another friend, who showed up for blood work, having been told that the order had been transmitted, only to learn that it had been misplaced. The physician's office (he refuses to convert to electronic records) had to fax another copy to the hospital while my friend sat and steamed.

And then there was the time when I had a very busy day ahead of me and went to get a relatively simple outpatient procedure. While I waited (of course, they were running late), a nurse wandered in and asked, "Did they tell you that you must stay for an hour and a half after the procedure for observation?" Well, no, they — those unnamed people whose fault it always is — did not tell me.

Too often, providers — and in this case the main offenders are physicians — won't tell you much. In a recent piece in The New York Times, Michael Kahn, M.D., wrote of asking a friend about the care her mother was receiving in a hospital. She replied, "Well, you can at least have a conversation with her doctor."

I hope she was counting her lucky stars. I will long remember the time when, as I was explaining to my physician a physiological oddity of mine that I thought he would need to know about when treating me, he turned his back on me, walked out of the room and closed the door behind him. I haven't seen him since.

Physicians also — self-admittedly — can shade the truth or don't tell the whole story when dealing with patients. A 2012 study in the Journal of General Internal Medicine found that although most prostate cancer patients reported that their physicians had discussed treatment alternatives with them, only 10 percent of patients receiving coronary artery stents were given options by their physicians; 77 percent reported that their physicians spoke about the reasons for having a stent, but only 19 percent said that the downside of the procedure was discussed. Only 16 percent were asked about their treatment preferences.

End-of-life discussions are particularly tough for patients and physicians alike. A study published in JAMA in October 2008 revealed that physicians discussed end-of-life care with terminally ill patients only a third of the time. Anthony Lee Black, M.D., speaking of the ethical aspects of such situations, said, "It's easy — patients ought to know. Talking about prognosis is where the rubber meets the road." Yet many physicians believe that such frank conversations can crush any vestige of hope, leaving some patients despondent.

On the other hand, a California Health Care Foundation survey published in February of this year found that although 80 percent of patients said they would definitely or probably like to discuss end-of-life wishes with a physician, only 7 percent reported that a physician had spoken with them about it.

The continued silence haunting this issue can have serious negative consequences. In 2010, over the objections of many organized medicine groups, New York state enacted the Palliative Care Information Act, which requires physicians treating terminally ill patients to provide information about prognosis, treatment and care options, pain management, and hospice.

Although the goal of the legislation is laudable, we should all get nervous when politicians start playing doctor.

There is also the tricky area of disclosing medical error to patients, which many physicians are loath to do, for obvious reasons. A 2006 study of physicians in the Archives of Internal Medicine found that when asked how they would disclose mistakes to patients, 56 percent of respondents preferred statements that would describe the adverse event, but not the error that caused it, whereas 42 percent would talk about the error directly.

However, 19 percent of these physicians said they would not volunteer any information about the cause of the mistake, and 63 percent said they would not offer specific information about prevention of future errors. The researchers concluded that physician behavior in these situations was all over the map, and that "disclosure standards and training are necessary."

A 2009 study, published in Health Affairs in February 2012, found that "approximately one-third of physicians did not completely agree with disclosing serious medical errors to patients; almost one-fifth did not completely agree that physicians should never tell a patient something untrue; and nearly two-fifths did not agree that they should disclose their financial relationships with drug and device companies to patients. Just over one-tenth said they had told patients something untrue in the previous year." The researchers concluded: "Our findings raise … doubts about whether patient-centered care is broadly possible without more physician endorsement of the core communication principles of openness and honesty with patients." No kidding.

The Black Holes of Finance and Coverage

And this is not to mention the wonders of provider and insurer billing. There are the explanation-of-benefits notices that can take months to appear. Data on what the hospital billed, what the insurer paid, and what you're supposed to pay out of your deductible are completely out of sync. Even if you ask for a detailed, itemized bill and actually receive one, it might as well be written in Sanskrit. A physician colleague of mine, who is board-certified in two specialties and is no fool, told me that he has tried for hours to understand his mother-in-law's hospital bills, and just can't. "And I'm a doctor," he griped. Join the club, Doc; I'm a health policy analyst, and much of the time I'm in the same boat.

Speaking of billing, how about that insurance language? Last year, a survey conducted for Aetna found that 32 percent of respondents had difficulty understanding the total cost of a health plan (including out-of-pocket costs), and 30 percent did not know the difference between types of plans.

Marilyn Tavenner, acting administrator of the Centers for Medicare & Medicaid Services, said recently that many insurance offerings are presented in the form of something "the size of a small phone book, and important information about eligibility and benefits often is buried in the fine print."

After several scandals in recent years involving insurers playing fast and loose with policyholders who may not have understood what they were signing, the Affordable Care Act mandates that by 2013, insurers must provide a plain-language, four-page summary of every policy. "One of the primary purposes of this is to ensure apples-to-apples comparison across plans," according to Steve Larsen, an official with Health & Human Services.

The insurers complained, of course. Karen Ignani, president of America's Health Insurance Plans, lamented, "Health plans and employers regularly update the materials they provide to ensure [that] consumers have clear, user-friendly information about the benefits and costs of their health insurance policies. The [mandate for the short summaries] requires an almost complete overhaul and redesign of how information must be provided to consumers. The short time frame in which to implement this new requirement creates significant administrative challenges that will increase costs and result in duplication, because many plans are already developing materials for employers whose policies take effect October 1, 2012."

Or maybe some insurers preferred it when potential policyholders were left completely in the dark by the fine print and inscrutable language.

A Sense of Trepidation

This sea change in the use of information in health care — if it is indeed one, and I am not yet totally convinced — naturally makes many providers and insurers nervous. For physicians and hospitals, the specter of plaintiff's attorneys going on fishing expeditions, or the uncovering of incidents of true malpractice, is not likely to make their day. There is also the danger that some patients could use the information to go doctor-shopping in search of prescription drugs to abuse or a physician who will provide a service that other physicians think is unnecessary.

Providers also argue, with some justification, that some of these data are not properly risk-adjusted nor take key factors into consideration. (I am reminded of the hospital that, years ago, when the feds were releasing pretty raw mortality rates, showed a huge increase in its death rate. It explained that it had opened a hospice unit.) As the Commonwealth Fund study cited earlier found, many experts believe that the sciences of risk adjustment and measurement of outcomes are still evolving and are not yet where they need to be. And in some cases, such as Angie's List evaluations, there is little or no attempt to confound someone's personal opinion with facts.

In irresponsible hands, data can be used to prove just about anything.

But, it also must be said that at its heart, this tussle over who has or should have access to information is also a power struggle. Many practicing physicians were trained in those heady days when physicians were gods and no one questioned them, and some of them have never gotten over that feeling of power. Using medical jargon, refusing to explain things to patients, and brushing aside questions or concerns — these are all power behaviors. And it is hardly shocking that professionals who are used to wielding unquestioned power may not be thrilled to see it eroded.

But I also know that when physicians treating me realize that I am familiar with many clinical terms and often know something about what might be ailing me, and that I am going to offer my opinions and expect that they will be respected, the power-mongering tends to diminish.

Furthermore, in some cases there may be gender issues sneaking around in the background. I was complaining to a friend about my views not being taken seriously by a physician, and she replied, "They think all women are idiots." Bit of an overstatement, granted, but sometimes one can feel that way.

A friend of mine — educated, a whiz at finance and skilled in many ways — asked her husband's cardiologist about his test results. The cardiologist replied, "Oh, you wouldn't understand them." My friend glared at her (the cardiologist was a woman) and snarled, "Try me."

Gender is always a sensitive topic in health care, and as the above story indicates, it is not necessarily cut along the lines of male physician-female patient although, for a very long time, that was the demographic profile. Indeed, as late as 1970, only 5 percent of U.S. physicians were women. But many studies have found that women patients are often treated differently — and often are patronized — by physicians of either gender who don't take them or their complaints as seriously as those of male patients. That is a troubling and inappropriate power relationship in and of itself.

Also, part of this is generational. A physician who is now in his early 60s studied and trained in an environment strikingly different from that of many medical students and residents today. There is much more emphasis now on listening, hearing the patient out, explaining things, and generally trying to create more of a partnership and less of an unequal power relationship.

Whatever You Say, Doc

But it is unfair to place all the blame on physicians; patients often contribute to these problematic situations. Although I detest the term compliant in the context of health care, the fact is that many patients will do whatever they are told, without question. One reason, especially for older patients, is that they're used to the absolute power of the physician; it's a learned behavior. Another reason is that many patients have an inherent respect for authority, and anyone who has knowledge that you don't have can be seen as an authority figure.

And most patients harbor a desire — even if sometimes it's more of a desperate hope — to trust their physicians, nurses, pharmacists and hospitals.

The problem here is that passive patients can create a sort of medical Stockholm syndrome in which they, like the Swedish hostages in the 1973 bank standoff who came to relate to the robbers who were holding them, are willing to put up with abuse because of a fear that the alternative may be worse. These patients would never ask questions or doubt a physician's judgment. This can be extremely frustrating for physicians who really would like to have an open, mutually respectful relationship with patients.

Equally frustrating for physicians is the fact that patients don't always divulge everything or tell the truth, either. "Yes, Doc, I stopped drinking" (except for those three martinis last night). "Yes, I'm watching my salt intake" (that buttered popcorn at the movie doesn't really count). "Yes, I really am exercising more" (I walk around the couch once before I settle down with the remote for a long afternoon of watching football). Sometimes the patient is seeking to please the physician, sometimes he or she doesn't want to be scolded and sometimes he or she is embarrassed by not having done what was expected.

Failure to convey information can occur on either side of the patient-physician relationship, and it can thwart good patient care.

What I find hilarious — and here's hoping that electronic medical and health records will make this a thing of the past — is the amount of information that patients must supply to providers — over and over and over again. Who among us has not faced the Dreaded Clipboard, on which we must record height, weight, medical history, medications being used and other data every time we set foot in a hospital or physician's office? After being asked for the same information for the eighth time — I kid you not — I finally blurted out, "Haven't you folks ever heard of computers?"

"Our information is computerized, but we want to make sure that your insurance status hasn't changed." Since last week?

If You Provide the Tools, Maybe They Will Come

Despite all this, there is major change on the horizon, and some of it is barreling toward us with a vengeance. How can we ensure that it makes things better? Here are a few suggestions:

  • Try to allay fears all around; change is difficult for most people, and change of this magnitude can be downright scary.
  • Address the six obstacles to effective public reporting and use of data that were identified by the Commonwealth study, even if that will be difficult.
  • Understand that success will require culture change, which isn't easy and doesn't happen overnight; in some cases, the culture won't change until those clinging to it leave the scene.
  • Recognize and try to address underlying issues, such as shifting power relationships, gender friction and patient passivity.
  • Increase health literacy; even smart people may not be able to fathom complex clinical language.
  • Improve the quality, understandability and reliability of information; people won't use what they don't trust.
  • Be selective about what is made available, so that patients and providers are not overwhelmed by too much information, much of it superfluous or conflicting.
  • Monitor to see if use of information actually changes anything — if it doesn't, why are we going to all this trouble and expense?

That last point is critical. Another study in the March 2012 issue of Health Affairs found that publishing data on heart attack and pneumonia outcomes on the hospitalcompare.hhs.gov website did not reduce mortality rates for those conditions. A modest improvement was shown for heart failure, but the researchers could not ascribe that to the publishing of outcomes data. The lead researcher, Andrew M. Ryan, assistant professor of public health at Weill Cornell Medical College, concluded, "The jury's still out on Medicare's effort to improve hospital quality of care by posting death rates and other metrics on a public website."

Yet, a study in the same issue of Health Affairs found that if information is presented to patients in an easy-to-understand way, using elements such as dollar signs, stars, specific dollar amounts and simple labels, patients were more likely to select a hospital considered to be a high-value provider — especially if a check mark indicated that the hospital was one (however that might be defined).

So there is hope yet.

Steve Wetzell, vice president for health initiatives at the HR Policy Association, said at a 2009 conference, "If you or a family member were diagnosed with cancer today, would you have any real data to make a decision on which treatment to pursue or where to go? No. So we talk about consumerism, but consumers don't have the tools. It just won't work without the tools." Maybe that is finally changing.

A Matter of Trust

At the root of this entire debate is something very precious: patient and public trust in providers in an age when distrust seems to be the order of the day. Jessie Gruman, president of the Center for Advancing Health, wrote in an editorial in 2009, "Reports rating the quality of care offered by different hospitals, health plans and physicians provide statistics to inform our choices but vary widely in reliability and relevance. Combine these with an active press, a 24-hour news cycle, the proliferation of watchdog groups, and commercial interests that manipulate scientific claims to support their aims. The result is a media environment infused with messages that tell us that our every action increases our health risks, that science is uncertain, and that health care professionals and institutions are not living up to their obligations.

"This loss of trust is deeply disruptive. It leads us to devalue the professional opinions of our doctors, nurses and pharmacists and become skeptical about their recommendations. We begin to regard all information as equal; scientific claims bear the same weight as commercial claims and are regarded with suspicion or naive enthusiasm, depending on what suits our fancy. We can no longer sort the wheat from the chaff."

Although that is a possible outcome of the tidal wave of information and reporting requirements washing over patients and providers alike, it is hardly what any of us would want to see.

But something is most certainly happening. Writing about the lessons of repeated cholera epidemics in the United States in the 19th century, historian Charles E. Rosenberg chronicled the shift in public perception of physicians from disdaining them to holding them almost in awe — and described how the socially disruptive 1960s and 1970s changed the equation again. "Medical and biological ideas have been seen as an important source of legitimation for existing power relationships — and thus a component in particular systems of social control." As latter-day consumerism, skepticism and even open revolt reshaped society in the late 20th century, he observed, "The undeniable linkage between social authority and the control of specialized knowledge implied a reassessment of that linkage, its social consequences, and even the legitimacy of those privileged bodies of esoteric knowledge" (Rosenberg, The Cholera Years, University of Chicago Press, second edition, 1987).

Such a reassessment is beginning to take hold in American health care, and if we can nudge it in a positive direction, the day of the truly empowered patient finally may arrive.

Correction from my last column: I described Jack Dillenberg, D.D.S., M.P.H., as dean of the Arizona School of Dentistry and Oral Health at A.T. Stull University. It's actually A.T. Still University (I should really learn to proofread one of these days). Although the error was corrected within a day or two, early-bird readers may have noticed it. My apologies to Dr. Dillenberg and the university.

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.

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