What Did You Say?

We have a Model 88 radio on our kitchen table that we must have had for 20 years. It’s one of those devices where you adjust the volume by pressing the “up” button or the “down” button. My mother, who turned 90 last month, customarily set the volume to 50 and I set it to 35. I don’t know how those numbers translate into decibels, but 50 is louder than 35. Considerably louder. I took this quantitative observation as definitive evidence that my mother’s hearing was impaired, as is true for just about everyone who’s made it to their tenth decade, but she wasn’t persuaded. After a year of nagging—I confess, I nagged—my mother responded to an offer of “free hearing screenings” at the local senior center. When the screening was cancelled because of a blizzard, I figured that was it—I’d lost my chance. But the audiologist was persistent and he managed to reschedule the test.

My mother didn’t pass the exam. She was frankly quite surprised and assured me that all her friends complained that their children “mumbled” and were hard to understand, but they—octogenarians all—had no problem hearing each other. I suggested that was because they were all hard of hearing so when they got together they sat around yelling. She didn’t appreciate my comment, but she humored me and actually got fitted for hearing aids. She disappointed the fellow who did the initial screening and found a different audiologist, a lovely woman whose office is nearby and who treated my mother with both patience and respect. Nearly two years after I started nagging, and a year after the blizzard of 2015, my mother has two remarkable, virtually unnoticeable, in-the-ear hearing aids—and a $6000 hole in her bank account.

I can’t say that the hearing aids have transformed her life. But we don’t have nearly as many of those awkward dinner conversations in which I say something and a minute later, my mother says the same thing because she didn’t hear what I’d just said. The television in her room no longer blasts away in the evenings. The hearing aids haven’t solved all her problems, but they help. Just because it may not be possible to cure disease or restore function, doesn't mean there's no point improving a few crucial domains such as hearing and balance. Those modest adjustments can make all the difference.

My mother is not unique in her skepticism about hearing aids. Although 80 percent of people over age 80 have hearing loss, only 20 percent use hearing aids. For people with mild hearing loss, the rate is dramatically lower—more like 2 to 3 percent. A recent report by the President’s Council of Advisors on Science and Technology (PCAST), whose findings in the realm of hearing were summarized by Christine Cassel of the National Quality Forum and colleagues in a recent issue of the Journal of the American Medical Association makes some important policy suggestions that could radically change the status quo. 

PCAST identifies two critical barriers to change: primary care doctors, who tend to ignore hearing loss, feeding into their patients’ denial; and Medicare regulations, that exclude insurance coverage for audiology assessments and for hearing aids. The report doesn’t have much to say about how to modify physician behavior other than to assert forcefully that “it is time for the health care system to make hearing a priority.” It does have some concrete suggestions about paying for hearing aids, pointing out that the Veterans Administration does cover this technology and negotiates prices from major manufacturers, with the resulting cost averaging $400 rather than $2400 per device. Other western countries such as England, Denmark, and Switzerland include hearing aids as part of basic health care coverage. After all, the rationale for excluding them from the original Medicare legislation in 1965 wasn’t that they failed to meet the "reasonable and necessary" standard, but rather that they were presumed to be low cost, something consumers should pay for themselves. PCAST also suggests that the FDA could allow certain types of hearing aids to be sold over the counter, much as some reading glasses are available over the counter. The hope is that by making the process of getting hearing aids more “user friendly,” usage would increase.

Hearing loss has major consequences: it is associated with a marked increase in the risk of both falls and dementia. It leads to social isolation, poor quality of life, and greater dependence. And we can actually do something about it. The cost of making a difference is far less than the cost of treating all the hip fractures that older people will have because they don’t hear a warning or the services they need because they have become frail and dependent. Why can’t Congress (which would have to amend the Medicare legislation to pay for hearing aid technology and to amend the FDA’s rules for device regulation) see that this is a win-win situation?

In 2015, Americans spent an estimated $114 billion on “anti-aging” products. That’s almost one-fourth of the entire Medicare budget. What’s disturbing about this phenomenon is that most of these products don’t do anything at all—other than burn a hole in the consumer’s pocket. That was true in 2002 when Jay Olshansky, along with 50 other scientific colleagues, published an article in Scientific American called “No Truth to the Fountain of Youth” and it’s true today. There’s much that can be done to prevent or treat many of the diseases of old age—we can treat high blood pressure to prevent strokes and we can treat Parkinson’s disease to improve mobility, for example—but the massive doses of vitamins and antioxidants and brain exercises that many people are duped into consuming don’t work. Hence the importance of the recent announcement that the company Lumosity had paid $2 million in a settlement with the Federal Trade Commission over deceptive advertising practices.

You have almost undoubtedly heard the Lumosity ads. They are everywhere, even on public radio, where they aren’t called ads. The company makes “brain training games,” which it claimed would delay age-related cognitive decline and protect against the development of Mild Cognitive Impairment and Alzheimer’s disease. Now it’s possible that playing mind games for 15 minutes a day, 3 or 4 times a week, will make a difference. But so far, nobody, including the neuroscientists who Lumosity says have developed and tested their product, has been able to demonstrate this is true.

People do all kinds of things they find pleasurable or at least satisfying, so what’s wrong with engaging in “brain training exercises?” After all, the exercises might work. We just don’t have the evidence to suggest that they do. At least these activities are not downright harmful. Healthy people playing mind games are not analogous to patients with advanced cancer insisting on fourth-line chemotherapy-- even though in both cases the rationale is that they want to feel they are doing something to combat disease The harm from last ditch chemotherapy is considerable while the harm from mind games is the money and time people devote to something instead of engaging in a pursuit they actually enjoy. If you want to stimulate your mind, why not play a musical instrument or read a book or write a poem? Why not serve food in a soup kitchen or tutor a child in reading? Surely there are activities that are socially useful and personally rewarding that are also stimulating. 

Perhaps what distresses me most about the marketing of brain exercises, and why I think the FTC announcement is such good news, is that selling Lumosity's products to the consumer is built on deception. And not just any kind of deception. The company asserts that its claims are scientifically valid. But any careful analysis of the scientific studies shows this conclusion to be bogus. That bothers me. It bothers me because science is one of the best ways we have for arriving at the truth about our world—but to derive its benefits, we have to apply scientific principles and scientific reasoning carefully and accurately. It bothers me because we believe that patients should be involved in medical decision-making and for that they need information. As a result, physicians, the media, drug companies, and device manufacturers all inundate patients with data. But if patients are to decide wisely, the data on which they make their choices must be correct. And the data do not show that brain training exercises of the kind utilized by Lumosity can stave off dementia.

If you enjoy brain exercises—I, for one, find doing Sudokus and Crossword puzzles very relaxing—go ahead and do them. If you want to feel you are doing something to keep your brain functioning and can’t come up with anything other than puzzles, then do puzzles. But you shouldn’t waste your time and money doing something based on misinformation. It’s high time we stopped confusing lying with freedom of speech.

How Great is Green?

Nearly twenty years ago, the Pioneer Network launched what came to be called the nursing home culture change movement. The idea was terrific: convert nursing homes from medical institutions that revolved around the needs of the nursing staff to real homes that put the resident at the center of everything. The aim was to allow the frailest of the frail to find satisfaction and meaning in their lives. The core ways of achieving this were supposed to be creating a homelike environment, insisting that care be driven by residents' preferences, and empowering the staff to figure out how to organize their time. The results of this experiment have unfortunately been very mixed. When researchers tried to quantify the effect of whatever cultural changes nursing homes made on resident outcomes—and many nursing homes instituted changes in some but not all three domains—the results were modest at best. In response to the less than impressive results of efforts to institute culture change, a new revised approach, the Green House model, was introduced. Preliminary results of this effort to improve nursing home care are now in and they are, well, only slightly encouraging.

The Green House perspective starts with the assumption that small is good. Except for unusual situations such as college students living in dormitories and families living in refugee camps, most people don’t live with dozens, let alone hundreds, of other people. Similarly, the argument goes, nursing homes should be residences for 8-12 people. They should be run by a team, usually including a certified nursing assistant and a nurse among others, who organize their schedules with input from the home’s residents. Since families don’t usually rigidly divide childcare tasks (though there is often at least some division of labor), but instead everyone does a little of everything, Green House employees are also “universal workers,” who share the cooking, the cleaning, the personal care, and the nursing responsibilities. The effectiveness of the model is being investigated by a group of investigators calling themselves THRIVE (The Research Initiative Valuing Eldercare)  and the January, 2016 issue of Health Services Research reports on the results so far. 

THRIVE studied data from 28 homes and compared them to 15 conventional homes. The first finding is that, much as with the efforts to implement the Pioneer model, virtually all the homes adopting the Green House philosophy conformed to the model structurally, that is they were all small units for 8-12 people, but they differed in the practices they used to support resident choice and resident involvement in decision-making. 

Green Houses are notable for a statistically significant reduction in the rate of hospital readmission (31% lower than the comparison group) and a similar decrease in avoidable hospitalizations (30%). The absolute reduction, however, rather than the relative reduction, was quite modest. Moreover, the difference may just mean that the staff in Green Houses made more of an effort to speak to residents and their families about their wishes, which is a good development but does not mean that the care itself was any different. 

Spending on hospice care was lower than in other nursing homes—which could be seen as good if it indicates that the Green House provided everything that hospice normally offers (so enrolling in Medicare hospice in addition was superfluous) or bad if it means that Green House residents are deprived of useful and important hospice services. In a small number of areas, Green House residents did better in their activities of daily living than those in conventional nursing homes. But nurses in Green House models were less satisfied with their work than those in other facilities, presumably because they were unsure what exactly they were supposed to be doing and felt ill-prepared for their work. In all the other domains the researchers examined, Green Houses performed just like other facilities. On balance, the Green House can be seen as probably no worse than other arrangements and maybe marginally better.

What is going on here? Why haven’t the conceptual breakthroughs embodied by Pioneer and now Green House resulted in unambiguously better nursing homes? I think the answer is that most nursing home residents have dementia: in a recent government survey, 26% of nursing home residents had moderate dementia and 39% had severe dementia. These numbers may well be an under-estimate, given the tendency of clinicians to under-diagnose the disorder. Efforts to involve people with dementia in decision-making, to elicit and respect their preferences, and to give them meaningful activities are destined to fail because people with moderate to severe dementia can rarely do any of these things. The Green House, like Pioneer before it, is a great model for the physically frail older person whose mind is intact, but it’s not the answer for people with dementia. 

My view is that the best we can do for people with dementia is to treat them with dignity. That's a loaded and controversial concept in ethics circles, where some philosophers regard "dignity" as a fuzzy, meaningless term and others see it as a code word for "sanctity of life." I think dignity is something else. It has to do with respect and caring and with honoring what a person once was. The way to create better nursing homes for the majority of people who live in them, individuals with profound and worsening cognitive impairment, is to begin by defining just what dignity entails. Only then will we understand how to build the best possible institutions for care of those with dementia.

For Patient's Sake!

For the last few days I’ve been trying to identify an average skilled nursing facility. Just your typical “rehab,” the place you are likely to be sent after a hospitalization if your are over 65 and had a hip replaced or perhaps a heart attack or a stroke. Some place with dedicated “post-acute” beds, with or without a long term care section where people live out the duration of their lives once they can no longer live independently or in assisted living. Not a “teaching nursing home,” one of a handful of academic institutions that is affiliated with a long term care facility. Not a giant nursing home with 500 or more beds, nor a small ten-bed unit that’s within a hospital. Just a regular SNF, preferably in the Midwest. I’m working on a book about the American health care system, one section of which is about post-acute care, and I’d like a short vignette describing an average SNF. I have plenty of stories of patients’ experiences in a SNF but for purposes of my narrative, I’d like to describe a run-of-the-mill SNF. I’d prefer it not be in the Boston area because my book is already too Boston-centric. And I’ve already featured a hospital in Florida and a physician group practice in California, so for geographic balance, I’d prefer a facility in the middle of the country, preferably in an urban location (most facilities are in cities). It should be a for-profit institution because 70% of SNFs are for-profit. A 150-bed free-standing building in Illinois (Chicago would be good), Michigan (Detroit would be excellent), or Ohio (Cleveland would be perfect), owned by one of the major national chains such as Genesis or HCR ManorCare or Kindred would be ideal. I found quite a few that meet my criteria—but what’s really disturbing is that I can’t find out much about any of them.

I’m going to have to interview the director of nursing or the medical director or the administrator at Average Nursing Home. I may have to visit the facility. But I’d like to get some background information first. And I need to know whom to contact. My problem is that it’s almost impossible to find what I’m looking for and that means it’s almost impossible for prospective patients or their families, too. It means that accountability in these facilities, to which about 20% of older patients go after they leave the hospital, is largely absent. That’s disturbing.

I’ve looked through dozens of websites in the last few days and I have learned quite a bit about nursing home chains. I’ve learned that each chain comes up with a brief and none-too-informative description of its SNFs and essentially uses the same description for every one. They use the same photos, too: evidently there is a generic “dining room photo” and a generic “exercise gym photo.” I’ve learned that they believe that they are marketing the buildings and their equipment, not the people who run the buildings or who provide the clinical care. A bright and clean building with corridors wide enough to accommodate wheelchairs and walkers is nice, and modern exercise apparatus is desirable, but most important are the nurses and the certified nursing assistants who take care of the patients. And there isn’t a word about who actually works at the SNF. The only exception is Genesis Healthcare, the largest of the chains, which has a tab for “staff” on its websites and lists the administrator, director of nursing, admissions director, and sometimes the rehab director, along with some of their credentials. No email addresses, but the facility has an address and a phone number, so it’s possible to track these people down. Even Genesis doesn’t list the medical director, the physician who is required by law to be in charge of assuring that the facility meets certain standards of care.

Maybe I’m just spoiled—I’ve come to realize what an extraordinary wealth of information is readily available for other parts of our health care system, about hospitals and group practices and health insurance companies. Hospital websites, even though they are fundamentally about PR, include the names of the physicians on staff. You can look up how many cardiac surgeons and orthopedists are affiliated with a given hospital and you can find out where they went to medical school or did their residency. You can track down whether they have lost malpractice suits. Local newspapers often have articles about new developments at their community hospitals—new programs, new systems of care, new rankings, and of course new scandals. But about SNFs—hardly a word. When the Department of Justice accused several nursing home chains of bilking Medicare of billions of dollars by charging for “intensive” therapy services from which patients couldn’t possibly benefit—some of them were moribund—that rightly made national news. When a new SNF opened in a small town, that also made the news, principally because it was seen as a source of new jobs. But that’s it. Why? Why is there so little publicly available information about skilled nursing facilities?

If you look at a list of the largest nursing home chains in the US, you will find Genesis Healthcare (#1) is now publicly traded—but only since February, 2015 (it was taken private in 2007). HCR Manorcare (#2) is owned by a private equity firm and both Golden Living (#3) and Life Care Centers of America (#4) are privately held. Kindred (#10) is publicly traded. The private corporations have no incentive to have anything other than a sanitized public image. The publicly traded firms are accountable to their stockholders rather than to patients. If you want to find a facility that is reasonably forthcoming about its operations, you have to look at the non-profits.

This little exercise in futility gave me a far greater appreciation for Nursing Home Compare, Medicare’s website that offers the consumer information about nursing home quality. In the past, I’ve made fun of the five star rating system used by the site and criticized the choice of quality measures: for short stay facilities, the 5 quality indicators used are the proportion of patients who received a flu shot, the proportion who received a pneumonia vaccination, the proportion of patients with a new or worsening pressure ulcer, the proportion of patients newly prescribed an anti-psychotic medication, and the proportion who report moderate to severe pain. I was impressed by a NY Times article in 2014 detailing how nursing homes can game the system and win a five-star rating even when they offer abysmal care. But the latest version of the rating system, which went into effect in February, 2015, relies on actual independent measures of things such as staffing ratios, rather than on the nursing home’s self-report, and is both more reliable and more accurate. 

Nursing Home Compare doesn’t tell the whole story, but it provides an important piece of the story. We need investigative journalists shining a light on this industry and we need more transparency from the institutions themselves. We need to pay more attention to what goes on in skilled nursing facilities, for the patient’s sake.