Brave New World

The brave new world of high deductible health insurance: the answer for controlling Medicare costs? The answer for anyone? See my comments this weekend!

Not Dying Yet

I used to think that palliative care was just for people who were dying. Then I found out—about a dozen years ago—that palliative care had expanded its original focus on end-stage cancer patients to include people with serious illness throughout the course of their disease (or diseases). Palliative care, I realized, is far more than hospice, a program that in the US is effectively restricted to patients expected to die within 6 months.

With this shift in perspective, I decided to move from an emphasis on the geriatric population, principally the frailest and sickest of the elderly, to a concentration on patients in the last stage of life, regardless of age, and regardless of how long that stage might be expected to last. For some disease states, including cancer, this effectively meant people in the last six or twelve months of life, since it was only at that point that we could determine the seriousness of their condition with reasonable reliability. For other disease states, such as frailty or dementia, the relevant population included people who might live for several years with a progressive, ultimately fatal condition. So I was surprised and dismayed when I read the fine print in an otherwise important and insightful article published this week about palliative care—and discovered that the authors’ wise recommendations were confined to people with a prognosis of one year or less.

The reason that it is so important to move the conversation about goals “upstream,” to start the discussion long before life’s last gasps, is that patients often shift their perspective on what’s most important depending on their underlying health status. People who have moderate dementia, who might expect to live several more years, may well not want life-prolonging treatments that will simply allow them to live long enough to develop advanced dementia, particularly when the treatments are burdensome. People who are becoming progressively frail may not want treatments that are apt to have as a side effect an even greater degree of debility and dependence.

It may not be ideal to limit discussion of the goals of care to patients with a prognosis of one year or less, but maybe it’s better than the current reality, which often involves no discussion at all, or limiting such talk to patients who are moribund. The problem with such an approach is both that it means subjecting the hundreds of thousands of patients with dementia or frailty or progressive heart or kidney disease to invasive tests, procedures, and medications that they may not want and that it risks turning people away by, once again, equating palliative care with dying. Palliative care is not just for imminently dying people. It is for anyone with a serious, progressive, incurable illness. And since we can’t cure diseases such as congestive heart failure or chronic obstructive pulmonary disease or Alzheimer’s disease, and those are precisely the conditions that tend to afflict people 80 and beyond (and some who are younger as well), we need to think about palliative care for this entire population. Palliation is not just for the dying.

Swimming Upstream

When is the right time to have a conversation about goals of care? Commentary coming soon.

Rating the Ratings

Earlier this month, Medicare announced that it is revising the 5-star rating system currently used to measure nursing home performance. The ratings are available on the Nursing Home Compare website, which allows consumers to learn how a facility they might be considering going to shakes up relative to others. The problem, and the reason the system is being revised, thanks to funding from IMPACT (legislation passed in September), is that it’s not so clear that the vaunted rating system measures anything meaningful.

An investigative piece in the New York Times this past summer dramatically demonstrated the gap between reality and the ratings. The reporter visited the Rosewood Post-Acute Rehab outside Sacramento, California, an attractive facility that had garnered the much sought after 5-star rating from Medicare. But it turned out that the ratings focused entirely on annual health inspections and on 2 measures reported by the nursing home itself—staffing ratios and a quality of care index. The rating left out data from state authorities, even though it is those authorities that supervise the nursing home. In Rosewood’s case, the state of California had fined the facility $100,000 in 2013 for a patient death attributed to inadequate medication monitoring. California had also received 102 patient and family complaints between 2009 and 2013, way over the state’s average. And the facility had been the subject of a dozen lawsuits alleging substandard care. The revised rating system, by drawing on external audits of nursing home quality and electronically submitted staffing data, as well as by incorporating some new measures such as the proportion of residents taking antipsychotic medications, hopes to overcome the shortcomings of the current approach. But will it?

Nursing Home Compare is not the only attempt to come up with a single, composite rating for medical facilities, and nursing homes are not the only medical institutions to be graded in this way. Hospitals are also rated, and multiple organizations offer assessments. I recently stumbled on a fascinating case: in June of 2012, the Leapfrog Institute, a non-profit think tank devoted to measuring and improving safety in medicine, came out with its first hospital ratings. It awarded an A or B to 56% of the hospitals surveyed, a C to 38%, and grades below C to 6%. The UCLA Medical Center was given an F.  At the very same time, US News and World Report came out with its annual hospital rankings. In this report, the UCLA Medical Center was ranked #5 in the country. How can the same hospital get an “F” and an “A+” for its performance? And if you think that maybe UCLA is an unusual case, it’s not. Consumer Reports, which also got into the hospital rating business, ranked MGH below average in the same year (2012) that US News ranked MGH as #1 in the country. 

The answer to why different raters have different results is that the grade depends on the methodology used to compute it. Leapfrog assesses hospitals based entirely on performance in the realm of safety and does not adjust for the severity of illness. Consumer Reports uses a complicated mixture of a safety score, a patient outcomes score, a patient experience score, a hospital procedures score, and then a rating of heart surgery, with several factors going into each of the subscores. US News and World Report looks at outcomes (by which it means mainly mortality), process (which is largely nursing staffing levels), and other factors (a big part of which is reputation).  US News also rates hospital departments (neurology, cardiology, oncology, etc). I was particularly amused a number of years ago when US News ranked the Geriatrics Department of one of the Boston teaching hospitals among the top 10 in the country. It so happened that hospital didn’t have a geriatrics department.

Americans like report cards.  We rank toasters and washing machines and cars. We rate hotels and restaurants and auto mechanics. We have institutions devoted to product evaluation (think Consumer Reports) and thanks to the Internet, we now have a slew of informal, popular evaluations (think Yelp or Trip Advisor). I admit I find these reports very useful: when I was looking for a good bed and breakfast recently, I found it helpful to learn that 50 people gave one particular inn 5 stars. I could also read the individual comments to get a sense of whether the aspects of the inn that other travelers liked were of any particular concern to me.  But can we really come up with a report card for a hospital or a nursing home? Can we really reduce performance to a single grade?

Nursing homes and hospitals will inevitably game the system, just as colleges did when US News and World Report used the number of applications/number of offers of admission as a measure of selectivity. Colleges instructed their admissions officers to travel around the country encouraging students to apply, even if those students couldn’t possibly be accepted, because the more students applied, the more “selective” the college became. Some colleges created a huge waiting list and admitted many of their freshman class from the wait list—but only counted the initial acceptance letters in the computation of “offers of admission.” Some students and families have caught on and the media has started to downplay the annual US News numbers—for the past couple of years, the college rankings haven’t been front page news in the NY Times when the new ones are released. But colleges continue to regard the rankings as important and use them in marketing. Similarly, I’ve noticed big banners in the vicinity of some of Boston’s hospitals proclaiming their latest ranking. And I learned from a terrific piece of investigative reporting produced by Kaiser Health News 

in collaboration with the Philadelphia Inquirer that the hospitals pay to advertise their rankings. US News, Leapfrog, and another rating organization, Healthgrades, charge licensing fees to hospitals for the privilege of trumpeting their “achievement.” These fees are not peanuts: Healthgrades charges $145,000, US News charges $50,000 and Leapfrog charges $12,500.

There are now so many rating agencies, using very different rating scales and arriving at widely discrepant results, that there is even an organization, the Informed Patient Institute, that grades the raters. But the truth is that it is impossible to distill the performance of a complex institution such as a hospital or a nursing home to a single measure. Such efforts will inevitably hide the very real variability in performance depending on just exactly what is looked at. What you need to know depends on why you need to know it. Are you an insurance company, deciding whether or how much to reimburse a facility for a particular service? Are you a patient choosing a hospital (actually, you probably won’t have much say in the matter; in case of emergency, you will be taken to the nearest facility; and in other somewhat less urgent situations, where you go is typically determined by who your doctor is). Are you a patient or family member choosing a nursing home for long term care (you may have a fair amount of choice)? For short term rehab (you will have less choice in the matter)?

So will the revised ratings of nursing homes (coming in January, 2015) make grades meaningful? Probably not. Requiring nursing homes to report data on staffing electronically will likely improve the accuracy of their reporting—but is the degree of improvement worth the millions of dollars that will be spent on this? Including the rate of antipsychotic medication prescribing as a quality indicator might tell us something about whether nursing homes are unnecessarily and inappropriately sedating their residents—assuming the measure has corrected for the rates of serious psychiatric illness in the facility. The bottom line is that a single grade cannot capture all the features of a medical facility’s performance that are relevant to all the different individuals and groups for whom the ratings are intended. It’s time to abandon composite ratings.

The Report Card Mania

We give grades to nursing homes, to hospitals, to state health care systems: does this help improve quality? Post coming soon!

Farewell to All That

In his 1905 farewell speech to the faculty of Johns Hopkins University Medical School, Dr. William Osler commented that the school was wise to hire someone young and energetic in his stead (he was very distinguished—and 55 years old). In passing, he mentioned Anthony Trollope’s satirical novel from 1882, “The Fixed Period,” in which all 67-years olds are to be sent to a special sanctuary, a kind of cross between a high-end resort and a liberal arts college, and given one year to put their affairs in order. At the end of the year, the plan is to chloroform them. The idea was to make sure that everyone quit while he was ahead, without waiting for the decline thought to inevitably accompany aging. Osler’s speech sparked a huge outcry in the media, which inveighed against his alleged endorsement of universal, mandatory euthanasia. Osler, who was well known as a joker and prankster, had endorsed no such thing. His remarks about the “comparative uselessness of men over 40 years of age” and his recommendation for compulsory retirement at age 60 were said tongue-in-cheek.

A similar media frenzy ensued nearly 80 years later when then governor of Colorado, Richard Lamm, was quoted as saying that elderly, terminally ill patients "have a duty to die.” Lamm hastened to assure the public that he didn’t actually mean that seriously ill patients should commit suicide, assisted or otherwise. What he meant, or so he insisted, was that it made no sense from a societal perspective to expend enormous resources on medical care for the dying. His choice of words was unfortunate, as was his failure to acknowledge that another reason for limiting care near the end of life was precisely that it aggressive treatment did little, if any good, not merely that it cost a lot.

Now enter Ezekiel Emanuel, an ethicist, physician, and health policy guru, with his loud proclamation that once he reaches the age of 75, he wants treatments devoted only to his comfort, not to prolonging his life. Emanuel, unlike Trollope and Lamm, is dead serious, as his article in the Atlantic, "Why I Want to Die at 75," attests.

At its core, his argument shares the legitimate concern of his intellectual predecessor, philosopher Daniel Callahan, that failure to accept our inevitable mortality is leading us to make foolish decisions about medical care. As patients we choose, as a society we pay for, and as researchers we pursue treatments that offer a vanishingly small possibility of prolonging life, treatments that come with tremendous physical and emotional suffering and enormous cost. To the extent that Emanuel is arguing that this approach is wrong, I agree with him entirely. To the extent that Emanuel is arguing that we as individuals need to revise our goals of medical care as we age, I agree with him entirely. But to the extent that he is arguing that life is worthless after age 75 and that it would be better to forgo all medical care except that focused on comfort after one's 75th birthday, I think he is fundamentally misguided. 

Of course if Dr. Emanuel wishes to decline medical treatment in the future, that is his prerogative. Contemporary biomedical ethics teaches respect for individual autonomy, which means every individual is free to refuse any (or all) proffered medical treatments. So why should anyone apart from his friends and family, and perhaps his physician, care about the personal decisions that Emanuel makes about his medical care? The reason that people care—and that there has been a strong and negative reaction to Emanuel’s announced plans—is that they rest on various assumptions which, if true, would suggest that everyone else ought to consider the same approach. So it is essential to examine critically Emanuel’s views of what matters in life and his implicit belief that the only possible goals of medical care are either maximization of comfort or prolongation of life.

As a quick way to get a sense of what Ezekiel Emanuel considers important, take a look at PubMed, which lists all published scientific publications. Emanuel published 19 articles in 2013, almost all of them in leading journals including the New England Journal of Medicine, JAMA, and the Lancet. And that doesn’t include all his New York Times op-ed pieces (he is a “contributing opinion writer” for the Times), which arguably are far more influential. Now move on to Emanuel’s bio. He is Chair of the Department of Medical Ethics and Health Policy and Vice Provost for Global Initiatives at the University of Pennsylvania. As to what he does in his spare time, apparently he climbs mountains—the Atlantic article features a photo of him and his two nephews, with whom he recently climbed Mt. Kilimanjaro. Dr. Emanuel (he is also an oncologist) continues, at age 57, to function at a level that many would place somewhere off in the stratosphere.

So Emanuel is something of a superman and he’s concluded that when he stops being able to keep up his current pace, he can’t imagine that life will be worth living. Not that he plans to commit suicide or to ask anyone else to end his life. He will simply forgo all potentially life-prolonging therapy and die at the earliest opportunity. Now here is the first place where Emanuel is sadly misguided. He fails to understand or at least acknowledge the importance of any dimension of life other than what he has thus far experienced—success measured by the publication count and the prestigious positions, the mountains scaled, literally and metaphorically. It’s not just that proclaiming that life must be lived at a fevered pitch or not at all seems to categorize most of the rest of us as not-living-a-worthwhile-life; after all, Emanuel doesn’t claim to be imposing his standards on everyone else. It’s that Emanuel’s relentless desire for a narrowly defined kind of accomplishment gives short shrift to precisely those activities that many cultures deem of greatest value. The Jewish tradition, for example, calls upon every individual to participate in acts of loving kindness (gemilut chasadim) and in efforts to repair the world tikkun olam), however small those efforts.  Every stage of life comes with its challenges and its possibilities and it’s up to us to try to do our best in whatever condition we find ourselves.

But while I feel sad that such a talented and (otherwise) insightful person as Dr. Emanuel fails to see any merit to a life other than the one he is currently leading, that is not my main criticism of his stance. Nor is my main criticism that he is naïve if he believes that forgoing life-prolonging therapies such as pacemakers and antibiotics will necessarily shorten his life, when many people live for years without such treatments. Moreover, excluding a treatment from consideration merely because it might lengthen life may well have several presumably unintended consequences: refusing a flu shot (in the hope that you might contract the flu, develop complications, and die, a relatively unlikely outcome) has public health consequences as you may transmit the flu to others who do not share your death wish; and declining a pacemaker (in the hope that a slow heart rate might be lethal) may result in falls, broken bones, and dizzy spells all of which impair your quality of life without killing you. The primary difficulty I have with Emanuel’s perspective is that he completely misses the possibility that someone might have any other goal aside from maximizing comfort, on the one hand, or prolonging life, on the other. My view is that this is in-between position that Emanuel ignores is precisely what most people find themselves endorsing as they age.

We are both mortal and at high risk of experiencing increasing disability in the last couple of years of life (though not, as Emanuel seems to think, starting at age 75). The implication of these realities is that when death appears on the horizon (if, for instance, you develop a fatal illness) or when frailty rears its head (if, for example, you develop one or more impairments in your basic daily activities), it is a signal to reconsider the goals of medical care. Most people, I have suggested elsewhere in this blog as well as in my book, The Denial of Aging: Perpetual Youth, Eternal Life, and Other Dangerous Fantasies, choose comfort as their primary goal if death is imminent and choose maintaining their daily functioning, that is maximizing their quality of life, if they are becoming frail. Most people make this switch even though they continue to wish for a longer life; they are simply saying that if the price they have to pay for longer life is pain and suffering (in the first case), or poor quality of life (in the second), they are not interested. Dr. Emanuel, in his black-and-white, all-or-nothing view of the world, fails both to recognize that there is a middle ground where people choose treatments that promote quality of life, and that decisions to forgo treatment are predicated on the need to make trade-offs, not on the wish to die.

I hope that in all the furor over Dr. Emanuel’s article in the Atlantic—and he has certainly triggered a storm of protest—we will be able to get beyond the arrogant implication that only a life of intense and continuous activity is worth living, and accept the more modest reminder that is at the heart of his article: that we are all mortal. And as we approach the end of our lives, we may wish to modify our hopes and expectations in accordance with the reality of our situation and seek medical treatments that correspond to our new goals of care.

When Is It Time to Kick the Bucket?

Coming soon:
A response to Ezekiel Emanuel's article,  "Why I Hope to Die at 75."

To Cover or Not to Cover

The day of decision is coming. The Centers for Medicare and Medicaid Services (CMS) will decide soon whether to go along with the recommendation of the independent review panel, MEDCAC, against coverage of lung cancer screening using low dose CT-scans, or to bow to political pressure  to cover the test (see my post on June 23, Politicians: Keep Out). A spate of recent commentaries in medical journals weigh in on the debate. Most seem to support coverage, although they add a few caveats. Two of these caveats are intriguing: using a registry to actually generate data about what happens to older patients who are screened with lung CT scans and mandating the use of a formal shared decision making process.

Writing in a recent issue of JAMA, Harold Sox, a distinguished physician with a long career promoting evidence-based medicine, recognizes the weaknesses of the available data, principally the National Lung Cancer Screening Trial (NLST). The NLST simply was not representative of the Medicare population because it included only a small number of patients over age 65 and only a very small number over 70. Moreover, the patients followed—who had a lower risk of death if they underwent the screening with CT scans compared to screening with regular xrays—in all likelihood did not have multiple other chronic conditions, the norm for Medicare patients. But Sox is clearly worried about depriving those older patients who might benefit from screening if Medicare categorically refuses to cover the test. He therefore veers towards recommending coverage, but with the proviso that a registry be maintained that tracks all patients who are screened to see what happens to them. In principle, this information could be used to modify the rules about coverage later on. Taking away coverage for something that was previously offered is certainly possible—coverage of bone marrow transplants for breast cancer was rescinded after it was found to be both tremendously toxic and no more beneficial than conventional, less risky treatment—but it happens rarely because of pressure from patient advocacy groups, regardless of the data.

A second opinion piece in the same issue of JAMA argues that CMS should provide coverage but should address MEDCAC’s concerns by mandating “shared decision-making.” Shared decision-making rests on patients’ understanding the risks and benefits of the various options and deciding, in concert with their physician, which approach is most consistent with their own values and preferences. Now I am a fan of shared decision-making. And I support the use of decision aids, as proposed by the authors of this article, which are formal tools that systematically describe the risks and benefits of the alternatives in clear, readily understandable language illustrated by simple graphics. But for shared decision making to make sense, we have to know the risks and benefits of the alternatives. The reason that patients should have a choice to make is that some patients may be willing to accept one risk (say losing their independence) in exchange for a particular benefit (say a small chance of extending their life) while other patients might not. In the case of CT-scanning for lung cancer, the problem is that we simply don’t know what the risks and benefits are in older patients in general and in older patients with multiple co-morbidities in particular. So it’s just not possible to design clear and accurate decision aids to help patients think about screening for lung cancer.

The real issue is whether and under what circumstances it is appropriate to extrapolate from situations where we do have data to situations where we don’t. Sometimes there are plenty of good reasons for making such a leap. It seems reasonable to provide a treatment to a mature 17-year-old, for example, even though he is technically a child, and even though studies of the treatment were done in patients over age 18. After all, physiologically and socially, the 17-year-old is almost identical to the 18-year-old. Sometimes what initially seems reasonable proves not to be: it turns out that the data on first generation left ventricular assist devices (a high tech device that is essentially a partial artificial heart) could not be extrapolated from men to women because the devices were often too big to fit into a woman’s chest. Sometimes, however, there is good reason to believe that data obtained from one group cannot be extrapolated to another. There is good a priori reason to believe that neither safety nor efficacy data will be the same in old, sick patients as in young, healthy patients. It is eminently plausible to believe that the 75 year old with heart disease and diabetes might run into problems when undergoing open chest surgery to remove a lung cancer. The only way to know is to do a study involving older patients: there aren't any good shortcuts. 

Agreeing to pay for the test would no doubt be politically expedient. It would not be a wise decision.