Monthly Archives: September 2009

Can we talk rationally?

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Is it possible to have a rational discussion about health care reform? On some level, the answer is yes. I’ve observed and participated in conversations that are smart and thoughtful and that manage to stay respectful, even when people don’t agree with each other.

But when it comes to a national conversation, color me doubtful.

Only a year ago we were in the midst of an extremely heated presidential election campaign. In virtually every poll, health care was one of the American public’s top concerns. There was a sense at the beginning of 2009 that maybe this was the year health care reform would finally happen. There was momentum; there was support.

Now that we’re on the edge of the cliff, though, we’re balking. Apparently it’s one thing to talk in abstract terms about the need to make health care more accessible and more affordable to all Americans. Getting down to the details about how this might actually be accomplished seems to be another thing altogether.

Blogger Bob Doherty at the American College of Physicians explores this ambivalence among the public and comes up with some insights:

What people want is unlimited health care, paid for by someone else, at no cost to them. What they need is access to care that is reasonably affordable, with some limits to ensure that the total price tag doesn’t bankrupt the country.

It is the “limits” part that has people upset. They instinctively understand that health care reform will involve some limits on their own care, even as health reform advocates try to sugar-coat things by saying it can all be paid for by reducing waste and fraud and promoting “value” and “efficiency” in health care. We can deny all we want that health care reform will lead to rationing, yet much of the public believes that in the end, the government will put limits on the care they want.

In other words, we understand some compromises need to be made, but few of us want to be the ones doing the compromising. And like a hedge of thorns, it’s the snag on which we continue to stick, Doherty writes.

I think the president has not squared with the American people that it isn’t possible for everyone to get everything they want. But the critics of his efforts have also done a disservice by screaming “rationing” every time the discussion turns to controlling costs.

The issue, in my mind, is not whether there will be limits – call it rationing if you must, although it is such a loaded term. Instead, the question is who will do the rationing and how.

Doherty isn’t the only one asking the question. It also was raised recently by doctor-blogger Kevin Pho, with a slightly different twist: the tendency of patients to want tests and treatment even when all the available evidence suggests it’s not necessary or that it’s unlikely to confer any medical benefit.

“There’s a fundamental belief in our society that more medicine equals better care,” Dr. Pho writes. Squaring this belief with the need to accept the limits of what medicine can do seems to be extraordinarily difficult for many people. This disconnect between wants and needs has become a major underpinning of the larger discussion on rationing or limiting care.

It’s interesting to note that the Kaiser Family Foundation’s most recent tracking poll on health care reform shows that public support was up a few notches in September. Maybe people have gained some distance from the contentious town hall meetings during August and have had time to reassess their opinions. Maybe there’s a renewed sense of momentum. Maybe it’s just a statistical fluke.

By all accounts, the Senate Finance Committee will have a health care reform bill ready for a vote by this weekend. Anyone who was around in 1992 probably remembers the last time we got serious about health care reform. The effort crumbled into failure. In the ensuing 17 years, this is the closest we’ve come to attempting once again to making some meaningful reforms in health care. Arguably we need it even more now than we did in 1992. The question is whether we’re ready to want or accept what it might entail.

When you get right down to it, we all seem to hold slightly different views of what health care should be. Health care, after all, is very personal. Someone with a chronic disease experiences the health care system in an entirely different way from someone who’s never been sick a day in their life. What the old want for their health care is different from what the young want for theirs. When you toss individual values, beliefs and political ideology into the mix, it gets even more emotional and complicated.

I’m pretty sure there’s some common ground here, but it’s hard to find when so many of us can’t talk rationally about it. And rational discussion is what we need, even if we don’t really want it.

West Central Tribune photo by Rand Middleton

Fearing the needle

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I have no real fear of needles. Being stuck with a needle for a vaccination or a blood sample doesn’t bother me in the slightest. Even a bone marrow biopsy didn’t freak me out, although I wasn’t thrilled about it and would rather not go through it again.

For lots of people, though, the prospect of anything to do with medical needles is fraught with a scariness that goes far beyond the normal apprehension or dislike of being stuck. There’s a name for it: trypanophobia. It’s surprisingly common, affecting an estimated 10 percent of the American population.

We often joke about needle phobia. But for the people who have it, it’s anything but funny. Receiving an injection sends them into a panic. At the sight of a needle they can react with a sudden drop in blood pressure, causing them to faint. In more extreme cases they’ll avoid doctors, dentists and other settings where they might encounter a needle. Sometimes this phobia will lead to a generalized fear of medical and dental providers and a refusal to undergo medical visits of any kind.

(While we’re on this topic, I have been annoyed for years with the news media’s insistence on images of people flinching or grimacing or, worse yet, crying over getting a shot. What is up with this? I don’t expect photos of people doing happy dances while being stabbed with a needle, but why are we reinforcing the fear that this is going to be painful and scary? Now that I’ve gone public with my gripe, maybe this practice will be re-examined.)

As you might guess, people with trypanophobia can be quite resistant to the idea of getting a flu shot. That’s why the introduction six years ago of FluMist, an inhaled form of the influenza vaccine, has frankly been a good thing. It makes vaccination less anxiety-inducing for these people, especially for children. Some researchers, in fact, believe needle phobia might be rooted in painful or frightening experiences with medical needles during childhood, although there’s also some evidence suggesting this phobia is at least partially genetic in origin. I personally know of someone who had a needle break off in his gluteus maximus while receiving a penicillin shot during childhood; the needle had to be extricated with a tweezers. There’s no way this kind of experience wouldn’t be upsetting to a child and remembered long into adulthood.

From the health care professional’s point of view, it can’t be enjoyable trying to jab a child who’s crying and struggling, or having a needle-phobic patient pass out. There’s also the ever-present possibility of needlestick injuries and the risks they pose to health care workers.

Researchers have been working for at least four decades to come up with vaccines that can be administered via a nasal spray versus the traditional shot in the arm. The influenza vaccine, which hit the market in 2003, is the first to be successfully developed. Inhaled versions of vaccines for botulism and for tuberculosis also are being studied, and various nasal-spray vaccines have been introduced in veterinary medicine as well.

The challenge, of course, is to produce an inhaled vaccine that’s at least as effective as the injectable kind. There’s little point in taking the sting out of vaccination if the trade-off is going to be a vaccine that doesn’t perform as well.

Studies among children who received FluMist have found that it is as good or better than traditional vaccine at protecting youngsters from influenza. It seems to work best among children in the 2- to 5-year-old age group.

The jury is still out over whether FluMist works equally well among adults. Most studies to date have produced inconsistent results, with the latest findings suggesting the injected version of the influenza vaccine is more effective for this age group.

To be sure, FluMist has its drawbacks. Because it’s formulated with a weakened live virus, it can’t be used on everyone. So far, it has only been approved for healthy people ages 2-49. Whether this will ever be expanded to those 50 and older is an open question; not enough people older than 49 have been included in studies to determine the safety and effectiveness of using FluMist among middle-aged and older adults.

I’m not aware of any studies examining how people with trypanophobia feel about the option of receiving an inhaled vaccine. It would be interesting to know whether the availability of FluMist is encouraging these people to get vaccinated against the flu, perhaps for the first time in their lives.

Needles, alas, seem to be ubiquitous in medical care. They’ve been refined into a multitude of sizes and functions. They’re used for everything from basic blood draws to advanced surgical procedures. There’s no denying they sometimes hurt, and you don’t have to have a needle phobia to dislike them or to want to avoid them. Although the use of needles will continue to be inevitable for many medical procedures, it would be a kinder and gentler world if we could use them less often.

West Central Tribune photo by Gary Miller

A brief history of government health

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A whole generation has grown up and reached old age since the federal Medicare program was signed into law 44 years ago. This health care program for those 65 and older has been around for so long that it almost seems part of the permanent landscape – maybe too permanent and way too hidebound, according to the critics.

There was a time, though, when Medicare was seen as a radical social experiment, much like the public insurance option is viewed today. In fact it took 20 years from the time the concept was first proposed until the Medicare bill was finally signed into law.

It was fascinating to page recently through dusty back issues of the West Central Tribune and see the unfolding of the Medicare saga. We tend to forget where we’ve been, and many Americans nowadays might wonder why on earth the government would ever get involved in a cumbersome national health program that’s threatening to go broke.

But back in the 1950s and 1960s, times were different. There was no financial safety net for the old. The elder generation, especially women who were widowed, often spent their last years in poverty. When President Lyndon B. Johnson created his agenda for a "Great Society," one of the aims was to provide financial security and needed health care for Americans as they aged.

The Medicare bill was signed into law on July 30, 1965, during a ceremony at the Truman Library in Independence, Mo. Former president Harry Truman, who first proposed a national health program in 1945, was the first American to receive a Medicare card.

The Medicare bill contained 133 pages. During the first year of the Medicare program, 19 million eligible Americans enrolled, paying a Part B premium of $3 a month.

We might debate the wisdom and merits of government involvement in providing health care coverage. For millions of Americans, however, the Medicare program has worked, as this Kaiser Health News story describes:

… Many of the nation’s most satisfied health care consumers are recipients of an existing government health care plan: Medicare.

Audrey Bernfield is one of those very happy customers. "I feel very grateful," says Bernfield, 71, who lives in New York City. "I have wonderful coverage, and the few times that I’ve had to pay I’ve been reimbursed adequately," she says.

More recently and closer to home, we have the example of MinnesotaCare, the state’s subsidized health insurance program for working-age adults and families who might otherwise be uninsured. I remember the furor that accompanied this legislation when it was finalized in 1992. Critics saw the program as costly and of little long-term benefit to the people who would be eligible for enrollment. In a play on the program’s original name, HealthRight, the critics dubbed it "HealthWrong."

But there’s no arguing the program has helped hold down the number of uninsured in Minnesota. In a retrospective this weekend with former Gov. Arne Carlson, the Minneapolis Star Tribune points to it as "a social good."

It means more people have the preventive care and early treatment that make for healthier, more productive, more taxpaying lives. Many of the 125,000 low-income Minnesotans who buy state-discounted MinnesotaCare insurance would need to leave the workforce without it. In that way, MinnesotaCare has reduced welfare costs.

Nothing is perfect, of course. The architects of the Medicare bill could not have foreseen how the costs would balloon as medicine leaped forward and life expectancies climbed. Medicare has attempted to rein in the growing expense not by being innovative but by paying less to the people and the organizations who provide the service. MinnesotaCare reimbursement for dental care is so woefully low that many dentists don’t even see clients who are on the program.

If you want to criticize government-run health programs, you don’t have to look hard to find something bad to say about them. We could say the same thing, however, about the private-sector insurance industry.

There’s a saying that one of the functions of government is to provide services the private sector can’t or won’t provide. It would be interesting to speculate on what our society would look like without Medicare, without Medicaid, without the Children’s Health Insurance Program, without MinnesotaCare – in short, without any government health programs of any kind. Would the private insurance industry be clamoring to cover elderly and low-income Americans? Or would they be deemed too expensive or not worth the underwriting risk?

This is not necessarily meant as an endorsement of a public option. But it’s worth keeping in mind that Medicare and MinnesotaCare were initially considered radical – yet they’ve managed to meet a need and to do so fairly adequately. And somehow the sky hasn’t fallen in and the sun continues to rise and set every single day.

 Photo: President Lyndon Johnson, right; HEW Secretary John Gardner, second from left; and Society Security Administration Commissioner John Ball, left; with Tony Palcaorolla of Baltimore, Md., the first member of the general public to apply for Medicare Part B. Photo courtesy of the United States Social Security Administration archive.

Hold the Mayo?

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The Mayo Clinic has reigned for many years as an example of health care that’s both high-quality and cost-effective. Many Minnesotans are proud that this facility, known the world over, is in their own back yard.

More recently, Mayo has been touted as the example to which the rest of the nation ought to aspire. But is this realistic or even desirable? The Washington Post took a critical look this past weekend and concludes that the jury is still out on whether Mayo is "a model or a mirage":

Few dispute the prowess of Mayo, which brings in $9 billion in revenue a year and hosts 250 surgeries a day. But a battle is underway among health-care experts and lawmakers over whether its success can be so easily replicated. Before embracing a fundamentally new approach to health care, dissenting experts and lawmakers say, Congress should scrutinize the assumption that a Mayo-type model is the answer.

Mayo’s patient demographics and payment structure are not typical, the article points out. Patients at Mayo are "wealthier, healthier and less racially diverse than those elsewhere in the country." Cost efficiencies at Mayo and at other well-known facilities in the Upper Midwest, such as Gundersen Lutheran and the Marshfield Clinic in Wisconsin, might be the result of a population that’s simply healthier and has lower rates of poverty and chronic disease.

Indeed, geography could be more important than we think. The Washington Post article notes that "Mayo’s other facilities, in Jacksonville, Fla., and Phoenix, have total spending rates that are roughly proportional to those in other hospitals in those areas. And across the Upper Midwest, per-patient spending is low, including at centers where doctors are not on salary." This suggests local or regional culture, attitudes and values surrounding health care might be among the critical determinants for how any given community uses its health care resources. It also incidentally calls into question the assertion that competition in health care leads to lower costs.

What is Mayo’s response to the Washington Post article? The Rochester Post-Bulletin talked to Josh Derr, manager of Mayo’s Health Policy Center. To read the full interview published today, you need access to the print edition, but there’s an online excerpt here, in which Derr discusses how other clinics might replicate Mayo’s model of care.

For what it’s worth, the attention being focused on Mayo as a paradigm of what health care should be seems a little misplaced. Yes, it provides specialty care and high-level procedures such as transplant surgery. It’s a center for research and teaching. For many Minnesotans, it’s the place to go if they receive a cancer diagnosis or need highly specialized care that’s not likely to be available at other facilities. It’s not necessarily the first place that comes to mind, though, for the vast majority of people whose main need is for routine care.

The real question is not what a single, rather rarefied institution such as Mayo is doing to provide high-quality, cost-effective health care. The real question is this: If health care in the Upper Midwest is measurably better at providing effective services at a reasonable cost, why is this so? What do the region’s hospitals and clinics have in common? What sets them apart from other regions of the United States? What makes them successful? What can we learn from them?

We can easily find examples right here in rural Minnesota that are worth studying. Maybe we should be asking why they can’t be the ones everyone else wants to emulate.

Update, Sept. 25: The Minneapolis Star Tribune takes a closer look at Mayo’s influence on how health care reform legislation is being shaped.

Photo: the Mayo and Gonda buildings, Rochester, Minn. Source: Wikimedia Commons.

The view from the trenches

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Most doctors want to provide good care for their patients, but they’re up against a reality that often undermines their best efforts and makes it hard to live up to the dictum "first do no harm."

What do you do if the patient really needs to be on medication but can’t afford to pay for it? What about the patient who’s struggling with a medical issue and is behind on paying his or her doctor bills? Why do so many patients lack a medical home and a primary care doctor who is responsible for their care?

One of the things I like about physician-bloggers is the perspective they bring. They see these issues from a point of view that most of us don’t have – and from time to time they give us a peek of their world and some of the struggles with which they’re confronted every day.

For Dr. Timothy Malia recently, it was three patients and their three e-mails, and the disheartening prospects for any kind of health insurance reform. One of the patients had a high deductible and wanted to skip an X-ray so she wouldn’t have to pay the cost out of pocket. Another patient decided to skip refilling two prescriptions and postpone an appointment -again, to save money. And the last patient was uninsured, struggling to attend school and cope with mental health issues, unable to afford an office visit and owing the doctor for three or four previous visits.

"I was disheartened," Dr. Malia writes:

As a physician I feel a moral obligation to care for them, a feeling that goes beyond the business of health care. But, in the end, society has made health care a business, and there is only one way to keep the doors open in the American marketplace. I used time to try to help these three patients, but my soul’s bruising made me less effective the rest of that evening, and each time I thought of the three of them since then.

He wonders how we can finance health care so patients can receive necessary treatment and doctors aren’t hampered in providing basic services. And he asks the question: "Is it too much that I, as a family physician, can hope my patients did not struggle with the costs of only the most basic and reasonable services?"

Over at Musings of a Distractible Mind, Dr. Rob Lamberts ponders the implications of medical homelessness and concludes it is one of the main problems with the current health care system:

Given the nature of care in the U.S., most patients are required to be their own homes. They serve as the conduit where medical information from one provider goes to another. They are the prime decision-makers in their care – often making these decisions without understanding or assistance from those who do understand. They are the only ones with the "big picture" of their health, yet they don’t really know enough to say if that picture is good or bad. They are helpless and vulnerable to sales pitches from drug companies, device manufacturers, insurance companies and unfamiliar doctors.

I am not talking about every patient in our system, but I am talking about a large portion (perhaps the majority). Some may spin this as patient empowerment, but unfortunately much of it is a case of patient abandonment. People are left to fend for themselves in a confusing, complex, and hostile system, and unfortunately many of their lives depend on their ability to manage this.

The primary care doctor’s office would be the logical place for patients to have a medical home, Dr. Lamberts writes. But this would take time, access to information and an adequate supply of primary care doctors, none of which the current system is able to meet.

Dr. Lamberts doesn’t have an answer to medical homelessness. He believes, however, that "one of the first steps is for people to be aware there is a problem in the first place."

How much, exactly, should Americans be expected to pay out of pocket for their health care? It’s one of the questions raised by Dr. Malia; Kaiser Health News takes a closer look here at this complicated issue and the divisions it has created among Washington lawmakers.

For another take on patient empowerment, and some interesting discussion, check out Dr. Lucy Hornstein’s recent post, "The Dirty Little Secret about Patients as Partners in Health Care," at her blog, Musings of a Dinosaur.

Illustration: trench warfare, World War I. Photo courtesy of the U.S. government.

Desperately seeking orthopedists

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The Willmar medical community has racked up some recent successes in bringing new doctors on board. They’re still struggling, however, to find more orthopedic surgeons – a specialty that continues to have high local demand but is short on supply.

It has been a source of ongoing disappointment and frustration, for the community as well as for ACMC and Rice Memorial Hospital. It’s not that the medical group and the hospital aren’t trying hard enough; they are. Unfortunately they’re up against a set of national trends that don’t work in their favor.

A workforce study by the American Academy of Orthopaedic Surgeons sheds some light on some of the things that have been happening within the profession. The study is a few years old; the data were collected three years ago during a survey of 24,000 orthopedic surgeons who are members of the academy. There’s no reason to think, however, that the picture has changed dramatically since 2006, and indeed the survey results help illuminate why it has become increasingly challenging for rural communities such as Willmar to recruit orthopedic surgeons.

One of the most significant trends: Since 2000 or thereabouts, orthopedic surgeons – especially younger surgeons – have become more likely to specialize. Only about one in four now practices general orthopedic surgery. Almost 40 percent are specialists, and 32 percent combine general orthopedic surgery with specialty surgery. Among those who are specialists, about 20 percent focus solely on hand surgery, and 18 percent specialize only in surgery on the spine.

Obviously there’s a need in rural Minnesota for orthopedists who can do hand and spine surgery. But for orthopedic surgeons whose practice is highly specialized, there probably isn’t enough patient volume in a rural area to financially sustain this type of service, hence they tend to be more concentrated in urban and suburban areas. Meanwhile, rural communities find themselves competing for a smaller supply of orthopedic surgeons who are generalists or who specialize in more than one procedure.

Another finding from the survey: Orthopedic surgeons overwhelmingly prefer to practice in single-specialty groups. Eighty-one percent of the surgeons in the survey were in private practice, and 60 percent of these were orthopedics-only group practices. Only 9 percent are in multi-specialty groups such as Willmar’s ACMC. It’s not clear why this is so, but it’s what the numbers are telling us.

The survey also found the orthopedic surgery workforce is getting older. Orthopedic surgeons under age 40 accounted for fewer than 15 percent of orthopods who were actively practicing in 2005-06.

A particularly interesting finding from the survey is a trend toward early retirement. The study notes:

There is a small, but significant, group of orthopaedic surgeons retiring from active practice earlier than the expected retirement age of 65 in the U.S. The reasons for this retirement are unknown without further study.

The survey queried orthopedic surgeons about their retirement plans and found that nearly 8 percent expected to fully retire within the next two years.

Essentially what we have is a workforce of orthopedic surgeons who are getting older, getting closer toward retirement, and being replaced by younger surgeons who are increasingly likely to specialize (although the AAOS report notes that the trend towards specialization appears to be stabilizing).

What does it mean for the local community? Orthopedic surgeons are out there, but given the overall issues with the workforce supply, the recruitment challenges are unlikely to ease any time soon. For many years Willmar enjoyed a strong, thriving orthopedic surgery program that had been built up by ACMC and Rice Hospital; in fact it was somewhat unusual among rural Minnesota communities. Patients and the community perhaps grew to expect this level of services would always be available, and we’re now having to adjust to the fact that it’s not. As orthopedic surgeons retire or move on, they’re becoming harder to replace. Although local providers know there’s a need and although they’re working on it, progress is unfortunately far slower than they’d like.

The whole situation underscores why the physician supply and the ability of local entities to recruit doctors is so important, and why it should matter to the rest of us. Without the physicians – and, we’d add, without other qualified personnel such as nurses and technologists – the service simply can’t exist.

Illustration courtesy of Fotosearch

The politics of apology

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As Americans confront the monster issue of health care reform, there’s been a lot of discussion about tort reform and curbing the ability of patients and families to file a lawsuit when things go wrong. Unfortunately there’s been far less public discussion about how to compassionately manage the relationship between patients/families and providers in the wake of a bad outcome, and perhaps avoid altogether a painful, bruising trip through the civil justice system.

A newly published study may have muddied the waters further by suggesting that even when doctors apologize and take responsibility for harming a patient, they still might be sued. The patients in the study had a better perception of doctors who apologized “but weren’t significantly moved not to sue,” the ACP Internist summarizes.

Saying the word “sorry” has long been a touchy issue in the medical community. For one thing, it’s just a hard thing to say. It’s hard when there’s a bad outcome, even if everyone on the medical team did everything right. It’s especially hard if an error by the physician is directly responsible for harming the patient.

Malpractice insurers and risk managers also have traditionally counseled doctors and hospitals to clam up after a mistake. If you admit to nothing, nothing you say can be used against you, the reasoning goes. From a human relations standpoint, this is terrible advice. When something goes wrong with their care, patients and families generally are frightened, upset, vulnerable and in need of reassurance. A wall of silence can breed mistrust or anger. But who can really blame doctors for keeping mum when the stakes are so high for them, both personally and professionally?

Only within the past few years has the importance of apology begun to be recognized and openly discussed in the medical community.

Why do apologies matter? We don’t have to look any farther than three recent and highly public transgressions – Rep. Joe Wilson’s outburst during President Obama’s speech last week on health care reform, the cussing-out that tennis star Serena Williams unloaded on a judge at the U.S. Open, and rapper Kanye West’s boorish microphone grab Sunday night at the MTV Video Music Awards – to know that society expects people who screw up to acknowledge it and say they’re sorry.

Apology “has the power to repair harm, mend relationships, soothe wounds and heal broken hearts,” psychotherapist Beverly Engel writes in her book, “The Power of Apology.”

Apology is not just a social nicety. It is an important ritual, a way of showing respect and empathy for the wronged person. It is also a way of acknowledging an act that, if otherwise left unnoticed, might compromise the relationship. Apology has the ability to disarm others of their anger, and to prevent further misunderstandings. While an apology cannot undo harmful past actions, if done sincerely and effectively, it can undo the negative effects of those actions.

In short, apologizing brings emotional benefits to everyone involved.

It’s therefore disheartening, and even disturbing, to see the extent to which apology is often commodified in the medical world. Although there’s general consensus that patients and families should receive an apology when an error or harm occurs, apologies are still more likely to be the exception than the rule. In more than 30 states (Minnesota isn’t one of them), laws have had to be enacted to ensure that expressions of apology won’t later be used against physicians if a lawsuit is filed. At times the discussion seems more focused on apology as a means to an end than on the fact that it’s simply the right thing to do.

If you’re a physician and you’ve been conditioned by years of training and practice to keep quiet about your mistakes, there’s going to be a certain amount of fear about apologizing. The study about the impact of apology on the patient’s likelihood to sue, which was published in this month’s edition of the Journal of General Internal Medicine, unfortunately provides ammunition for the status quo: “I apologized and the patient sued me anyway, so what’s the benefit of apologizing?”

A couple of important points: First, this was a small study, involving 200 participants, and it measured people’s reactions to a simulation, not to real-life experience. Errors and apologies don’t take place in a vacuum. The patient’s relationship with the doctor, the patient and family’s prior interactions with the doctor and with the health care setting, the details of the incident – all of these come with an emotional context that’s not easily replicated by a simulation. It would be all but impossible to say, with any accuracy, whether the subjects in the study would respond the same way to an actual medical error and apology.

Second, most studies on this issue have found patients and families want an apology after something goes wrong – and that their relationship with the provider can be damaged, maybe permanently, when no apology is given.

Some of the most extensive work on disclosure and apology comes from the Sorry Works! Coalition, a nonprofit organization that offers training and advocacy and also serves as a national information clearinghouse. Although the coalition’s name suggests the main emphasis is on apology, the Sorry Works! strategy is about far more than saying the word “sorry”. It’s also about how the apology is conducted and, even more important, how patients and families can be compensated fairly for any harm they’ve incurred. In other words, it’s a process and it often unfolds over time.

Because we’re dealing with human beings here, we can’t always predict how they’ll react. Even when an apology is made sincerely and respectfully, it might be rejected by the patient and/or family. Saying you’re sorry does not magically guarantee the right response, nor are patients and families required to accept an apology once it’s uttered.

Sometimes people will sue no matter what. But surely there are times when differences can be settled less painfully with the words “We’re so sorry this happened” and an acknowledgment of responsibility. It is, after all, what most people want. And we should be asking ourselves why this isn’t a bigger part of the debate about tort reform.

The age-old challenge of contagion

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Here’s a true story: At a local place of business recently, a customer showed up with a young child who had H1N1.

Public health officials at the local, state and national levels have been talking for the past six months about the H1N1 novel influenza virus. They’ve been emphatic in their advice: Stay home if you’re not feeling well. But it’s pretty clear from this anecdote that the message either isn’t reaching everyone or isn’t being heeded by everyone.

Limiting the spread of contagious disease has been a public health issue throughout human history. As bubonic plague swept across medieval Europe, people tried to ward off the disease in various ways, from carrying around nosegays of flowers in the belief this would protect them, to more drastic measures such as walling up entire households when one person fell sick.

Thanks to modern germ theory, we now know much more about how viral and bacterial diseases are spread, and presumably are better equipped to prevent them. The success of our public health strategies still depends, however, on 1) an educated public; and 2) a public that follows through on the message.

By now, most people in the United States have probably at least heard the term "H1N1." They probably already know about influenza and about flu shots. The challenge is getting them to act on what they know.

It’s already well known that in spite of the availability of the seasonal influenza vaccine, thousands of doses go unused each year. The incidence of annual flu vaccination is higher locally than the national average, probably because local medical providers have been aggressive about promoting vaccination and offering plenty of opportunities for people to get their annual flu shot. The same can’t be said for other communities around the U.S., however.

The appearance of the H1N1 novel virus has added a whole new wrinkle to the picture. There’s confusion over the vaccine (a formula has been approved but the vaccine itself won’t be available for at least the next few weeks). There’s still some debate over whether people will need one dose of the vaccine or two doses. There’s still a fair amount of skepticism among the public over whether the whole H1N1 pandemic has been overblown.

The current best advice from public health officials is: Get your seasonal flu shot now; the vaccine is available and it’s one of the first lines of defense. Practice good health habits: Wash your hands frequently, cover your coughs and sneezes, and stay home if you’re sick.

Not everyone is willing or able to follow all these recommendations, and indeed there can be extenuating circumstances for why someone who’s sick is out and about in the community. But the result can be the continued spread of disease. All  the more reason to do what we can, both for our own sake and the sake of everyone else around us.

Illustration: the Black Plague, Italy, ca. 1348

What not to say

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People dealing with cancer (or other serious health challenges, for that matter) often face a barrage of comments from friends, relatives and co-workers who mean well but who end up saying things that, shall we say diplomatically, are unhelpful.

It’s a topic that can really push people’s buttons, as an online discussion last week at the New York Times Well blog demonstrates. The writer asks the question: How do people with cancer feel when someone calls them "brave" or "strong"? It unleashed a whole lot of commentary from people who’ve dealt with this firsthand.

Being called strong "doesn’t acknowledge the hell they are going through, how weak they feel, and the moments where they feel beaten," one person wrote. "THIS is what people need recognized. Compassion, understanding and acknowledgement of those moments."

From someone else:

It can create expectations that we’re supposed to show a brave, happy face to the rest of the world. That we’re supposed to be the Good Cancer Patient. There are times when we need to give voice to the feelings of grief and anger and frustration and discouragement, but when people are so busy focusing on how strong we are, it tends to shut down the conversation.

A 37-year survivor (many people who’ve had cancer don’t like being called survivors either) had this to say:

I used to want to smack anyone who called me "brave." I neither wanted nor needed their accolades nor their pity. When you are diagnosed with cancer, you have two simple choices: go nuts or deal with it.

In an online discussion group for people with Hodgkin’s lymphoma, a long-running thread titled "The Dumb Things People Say" has collected more than 300 responses.

What are some of the things people say that can be insensitive or hurtful? Here’s one: "At least you’re young." Another one: "I know just how you feel." And "Everything happens for a reason." And "God doesn’t give you any more than you can handle." And "I know someone who had the same type of cancer and he died." Comments that "this is a good cancer to have" (Dana Jennings, a New York Times editor who has been blogging about his prostate cancer, takes on this platitude in a post titled "The Good Cancer?") and unsolicited advice about medical and/or alternative therapies also tend to be unwanted.

Medical professionals, who you’d think would know better, can be equally guilty of saying things to patients that are dopey, thoughtless or ill-advised. A 45-year-old in the Hodgkin’s lymphoma online community relates this story about her oncologist:

First meeting: "You’re lucky to have Hodgkin’s."

"It’ll be straightforward to treat." (famous last words)

Second meeting (said with glee): "I’ll be following you for the rest of your life."

At some point, virtually all of us will have someone we know who’s diagnosed with cancer or some other disease, or we ourselves will be the one with the diagnosis. There’s probably no single right thing to say, but some things are more helpful than others.

From the commenters at the New York Times:

- I would say, figure out what kind of person you’re dealing with, and then pick an appropriate response.  But really, "I am so sorry you are going through this – it really stinks" is never a wrong response. Where you’re most likely to go wrong is in the attempt to paint a rosy face on things. Don’t. Let the person do that, but only if he or she wants to. Don’t act as if the person’s negativity will somehow prove fatal.

- The right thing to say is something that acknowledges what the patient has told you, and not something that puts your fears and feelings first.

- What I have learned, being a cancer patient, is: think empathetically for the one being treated. Imagine what will help them, then just do it. Don’t expect anything of them; they’re busy fighting for their lives.

- What helped me the most… was someone just listening to me. I just wanted to be able to express my fears without judgment and without someone telling me "you will be OK." because the truth was… I didn’t know if I would be… if I would survive.

Inevitably, a certain percentage of people don’t get it, and never will get it. I choose to believe, however, that most people sincerely mean well and want to help; it’s just that they don’t know what to say or do. Talking about it honestly, from the perspectives of patient, family member, friend, co-worker or professional caregiver, might entail saying things that make us all  uncomfortable, but it’s an important step down the road toward lightening the burden of this diagnosis.

HealthBeat photo by Anne Polta

Keeping the patients happy

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Does it matter if patients are satisfied with the service they receive? Or is it more important to simply provide care that’s clinically appropriate and forget about the frills and courtesies?

At most hospitals, leaders do care about providing a decent experience for patients and families, even if they sometimes fall short of this goal. And they invest a fair amount of time and money conducting surveys to obtain feedback and monitor their level of patient satisfaction.

The granddaddy of them all is the Press Ganey survey, which is used by hundreds of hospitals across the U.S., including Rice Memorial Hospital here in Willmar. The surveys are sent out each month to a random sample of patients, asking them to respond to questions such as whether their pain was adequately controlled and whether they were satisfied with the doctor’s communication. The survey comes in several versions – one for the emergency room, one for adult inpatient care, and so on.

Results are reported in the form of raw scores which also are converted into percentile rankings, giving hospitals some idea of where they stack up against their peers.

Is it a fair representation of patients’ experiences? Well, yes and no.

Press Ganey surveys rely on patients taking the time to fill out the survey and send it in. Return rates consequently are low. Nationally, the response is about 13 percent. At Rice Hospital it’s a little higher, 17 percent, but this is still not very large.

Such a small number of completed surveys can make it hard to draw meaningful conclusions. For instance, if 10 surveys are returned and one gives the hospital bad marks, that single survey response can skew the entire score. And because people are more likely to fill out a survey if they’re really riled or feel strongly about something, a certain amount of selection bias can come into play.

Spend any time reading blogs by emergency-room doctors and nurses, who tend to be on the front line of the intersection between hospital and community, and you’ll discover skepticism – and downright loathing – of the Press Ganey surveys. But let’s not throw out the baby with the bathwater. When Press Ganey results are tracked over time, they often can reveal a trove of useful information on how an organization or a hospital department is doing.

Shadowfax, an anonymous blogger and emergency-room doctor somewhere in the Pacific Northwest, came to the defense of Press Ganey in this recent post. It’s true that patients can become dissatisfied if they don’t get the CT scan or prescription for narcotics they expect, even when it’s clinically inappropriate, Shadowfax writes. In a masterful understatement, he points out that "patients’ agendas when they come to the ER can be ill-informed."

However:

… When you look at P-G feedback in large quantities, the typical complaints or illustrative comments reveal that other factors are the critical elements in patient dissatisfaction. I’ve reviewed hundreds, if not thousands of these comments, and several themes have emerged that provide very useful information on how we can serve our patients better.

To answer the question, What are the key drivers of patient satisfaction? these elements seem to matter most:

- Patients want to be placed in the treatment area promptly and seen by a provider in a timely manner.

- Patients want their doctors and their nurses to be polite and respectful.

- Patients want to feel that their physician listened to them.

- Patients want to feel like their caregivers cared about their comfort.

I don’t think there’s anything controversial on that list. But how do you use it? You design processes and procedures that reflect the patients’ priorities as well as the medical necessities of the ER.

Shadowfax reveals that at one time, his hospital’s ER satisfaction scores ranked in the bottom percentile. Even for hardened cynics, the bottom of the Press Ganey barrel is not a good place to be. But with hard work, "we’ve turned the corner," he writes.

Not that it was easy. If patients are dissatisfied with the time they spend in the ER, it might be because the department is understaffed, or not adequately staffed for peak times, Shadowfax writes. If half the beds in the ER are occupied by patients who are being boarded, wait times can be lengthy unless this issue is addressed. In fact, wait times are the single biggest complaint among ER patients, he says:

The bed-to-door time and door-to-doc times correlate dramatically with the top-level "likelihood to recommend" patient satisfaction score. Patients hate waiting, and I do too, when I have been a patient. Further, this is not an unreasonable expectation on the part of patients. If the wait times are averaging an hour or more, then your ER is underperforming (dramatically) in this arena and it’s predictable that the P-G numbers will reflect that. Whole books have been written about optimizing ER patient flow, so I’ll not belabor the point. Still it must be noted that this alone is probably the single most important factor in overall satisfaction.

From a patient’s point of view, however, even a short wait time and a resolution of whatever problem brought the patient to the ER can be less than satisfactory if the patient feels he or she was rushed through the encounter, or treated brusquely or dismissively. This is the human factor, and it can’t be ignored, Shadowfax says:

Remember that when patients talk about their "comfort" that they are not necessarily talking about narcotics. That’s a common assumption in this age of frequent fliers and drug seekers. To the average patient, the ER is a bewildering and uncomfortable place to be. Little things like getting the patient a warm blanket, a pillow, pulling the curtain for their privacy, or finding a chair for their family member are incredibly important to patients. Telling them your name, or reminding them of their doctor’s name. Again, when you train your staff in these things, when you let them know that they matter and you get buy-in from the caregivers in the ER, then you start to see cultures change, and scores improve.

When these things become embedded in the culture, then a hospital knows it’s doing things right.

Some years back, Rice Hospital’s ER was in a similar situation to that of Shadowfax. While the ER’s Press Ganey scores weren’t at rock bottom, there was room for improvement. Hospital officials took it seriously and embarked on making some changes. These days the Rice ER almost consistently ranks in the 90th percentile in its patient satisfaction scores.

Maintaining this level of patient satisfaction in a busy, fast-paced emergency room is no easy task. Rice’s ER has been especially challenged this year with a rising patient volume that started back in February and has continued through the summer.

You’d think the Press Ganey scores would start to drop under the ongoing stress on the ER’s resources and staff. Instead, the latest round of patient satisfaction surveys, announced last week, showed the ER score actually rose in the past three months. That’s right, the score went up.

Whether you believe in the validity of the Press Ganey survey or not, it’s hard to see these results as anything other than a powerful statement about putting patients first. When the people in Rice’s ER talk about keeping the patients happy, it’s not just feel-good self-promotion. They really, really mean it.

West Central Tribune file photo by Gary Miller