Reforming Medicare: Enhancement or Evisceration?

Recent reports indicate that Congress will try to slash Medicare in order to balance the budget—making older people and disabled people shoulder the cost of its enormous tax cuts. The proposed plan, according to the Washington Post, would extract $537 billion dollars from the Medicare program over the next decade. At the same time, the budget passed by Congress and signed into law by the president in February created CHRONIC (Creating High Quality Results and Outcomes Necessary to Improve Chronic Care Act) which, the NY Times suggests, is a hidden jewel buried in the voluminous budget bill. Which is it? Is Medicare headed for enhancement or for evisceration?

Thus far, the cuts are theoretical (it’s not clear that the House Budget Committee will get very far with its recommendations) whereas the reforms are real—or will be when they go into effect in 2020. CHRONIC is to be lauded for accomplishing several important goals. 

First, the act recognizes that good outcomes among people with chronic conditions are contingent on what are not strictly medical services—as well as access to physicians, hospitals, pharmaceuticals, and medical devices. Wheelchair ramps and grab bars, as well as other products that lie outside the traditional definition of “durable medical equipment,” can in the future be paid for by Medicare—at least by Medicare Advantage plans that opt to offer them. This strategy does not go as far as the National Health Service did in the UK with its “personal health budgets” that allowed patients or their representatives to decide in concert with their physicians how to spend their share of the health care pie. The result—and the program, despite some vocal protests, has been so successful that it was recently expanded—is that patients with early dementia can choose, for example, to spend NHS money on creating a garden that will keep them engaged, potentially obviating the need either for medication to control symptoms of agitation or for institutionalization in a nursing home. Nor does the US strategy apply to traditional Medicare: in an effort to make Medicare Advantage plans, which currently have 19 million members, even more attractive (furthering the Republican goal of privatizing Medicare), only MA plans will be allowed to reimburse for these new supportive services. 

Second, CHRONIC permanently authorizes Medicare Special Needs Plans (SNPs) that cater to the highest risk Medicare beneficiaries including those living in institutions. These are special types of Medicare Advantage plans that offer enhanced integration and coordination of care, a critical feature for this complex population. 

Finally, CHRONIC extends its support of non-traditional forms of care, of which the allowance for grab bars was one example, to telemedicine (particularly relevant for homebound patients and in rural communities) and to home care (expanding the Independence at Home Program 50 percent from 10,000 enrollees to 15,000). 

So, what’s not to like? Two cautionary notes. First cautionary note: CHRONIC focuses overwhelmingly on Medicare Advantage plans (which currently cover 32 percent of Medicare beneficiaries), not on traditional Medicare (which covers the other 68 percent). This is no surprise, as the Republican Congress, which is interested in privatizing Medicare, sees shifting to the MA model as a route to achieving this goal. In principle, I don’t have any problem with expanding the number of MA plans (currently there are 3300, according to MedPAC, the Medicare advisory council) as they offer great potential for the coordination of care so essential to frail elders, but it will be essential to maintain the regulatory oversight of CMS if these plans are to be guaranteed to provide quality care. Moreover, we need to begin collecting detailed data on the utilization and outcomes of MA members. Right now, almost all of the voluminous data gathering by the federal government exclusively deals with fee-for-service enrollees so no granular analysis of the performance of MA plans is possible. 

Second cautionary note: while some of the provisions of CHRONIC appear to address programs, in fact the legislation is often grounded in how the programs are to be reimbursed. And the underlying philosophy is that the way forward lies with “value-based” care. I’ve blogged about this before, most recently in my post “V is for Value.” My concern about this approach is that it assumes that better and less costly medical care can be obtained simply through tweaking reimbursement. It’s the triumph of the economists’ view of health care as an industry subject to manipulation like other industries. The trouble with this insistence that VBP is key to all our problems, aside from the fact that so far value-based reimbursement systems such as pay-for-performance have not succeeded, is that it discounts the role of culture, advertising, and popular expectations. It is these factors, and not just payments to physicians, for example, that shape the enthusiasm for technology manifested by patients, corporations, and physicians alike.

CHRONIC is an admirable piece of legislation—for what it includes. What should concern us, however, is what it leaves out.

Medical Care: Fast and Slow

Victoria Sweet is the kind of doctor I wish my mother had. For that matter, she’s the sort of doctor I’d want for myself or my husband: she’s knowledgeable, she’s compassionate, she’s thoughtful, and she’s thorough. Her new book about her evolution as a physician, Slow Medicine: the Way to Healing, is a kind of prequel to her earlier, highly successful book, God’s Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine, which tells of a remarkable, if a bit anachronistic institution, the Laguna Honda Hospital, where she worked for twenty years. Laguna Honda is a chronic disease hospital, a place where people who are too sick for a nursing home but not sick enough for an acute care hospital spend their days. But, in Dr. Sweet’s telling, it is also a place where physicians can practice medicine in a way that is seldom possible elsewhere, with the result that many patients stay at Laguna Honda even when they do become acutely ill, and some can be discharged to the community. God’s Hotel is a paean to “slow medicine,” the movement, like “slow food,” that challenges the contemporary tendency to focus on efficiency, technology, and science rather than deliberation, reflection, and art.

The new book, Slow Medicine, describes Dr. Sweet’s journey from psychology graduate student to staff physician at Laguna Honda. She explains, using many delightful case examples, how she came to understand what slow medicine is and what it has to offer. Her account serves to highlight the differences between slow and fast medicine in actual practice. While Dr. Sweet is at great pains to emphasize the importance of both fast and slow medicine, and in fact is herself able to move effortlessly from one to the other—to “think out of the box” by administering a surprising medication, the opioid-antagonist Naloxone, as part of an otherwise fast-paced resuscitative effort—the point of the book, as with its predecessor, is to glorify slow medicine. Without the deliberative, questioning, comprehensive approach to patients at which she excels, Dr. Sweet assures us, our highly regulated, protocol-driven technological medicine will disappoint.

But there is a problem with this view. It assumes that the reason so much of medicine has become fast medicine is that it has been commodified—“healthcare”  has replaced medical care and “providers” have replaced physicians. Dr. Sweet is partly right: device manufacturers and drug companies are in fact concerned with selling their wares, and economists do promote the reimbursement system for physicians and hospitals as the key to improving health outcomes. They view the interaction between a physician and a patient as a transaction rather than a relationship. But the regulations and the forms, the oversight and the accountability that she so maligns are a response to a reality that she glosses over: in times past, before medicine became so fast, quality was mediocre. It’s simply not true that in the good old days, physicians were healers and now they are technicians. In the bad old days, many physicians used remedies that didn’t work, even though scientific studies had shown they didn’t work, and failed to use treatments that did, even when there was ample evidence for the newer approaches.

What Dr. Sweet neglects to mention in the “slow medicine manifesto,” with which she concludes her engaging and provocative book, is that she can be a superb physician without the rules and the bureaucracy because she is very, very smart, and endowed with an outsize measure of both perspicacity and empathy. Victoria Sweet, as she reveals in her bio but not in the book, majored in mathematics at Stanford University (not an easy thing to do) while minoring in classics (quite likely an unprecedented combination). Then she was accepted into a PhD program in psychology at Harvard, but decided to go to medical school instead. When she became intrigued by Hildegard of Bingen, a nun in the Middle Ages who practiced a kind of holistic, herbal-remedy-based medicine, she didn’t just read what she could about Hildegard, she decided to pursue a PhD in the history of medicine (while continuing to work as a physician). 

Victoria Sweet has much to contribute to the world, and her description of her patients—how she examines them “from stem to stern” and, when she is puzzled by what she finds, spends hours in the library trying to figure out what ails them—is inspiring. But there’s a reason we have rules and regulations, and it has as much to do with the reality that most physicians aren’t like Dr. Sweet as it does with the commodification of medicine.

Why Do We Need Health Insurance Anyway?

            Despite the seemingly endless barrage of articles stimulated by the equally endless efforts of the Trump administration to kill the Affordable Care Act, relatively little attention has been paid to why we need health insurance in the first place. Liberal Democrats assert that health care is a “right” and right-wing Republicans maintain that it’s a “privilege” and that the only business government has with health care is to facilitate the business of medicine. Some of the disagreement among the parties stems from differing assumptions about just exactly what health insurance is for. Is it to protect people in the event of catastrophe—a devastating car accident that results in multiple operations and an extended hospitalization, or metastatic cancer that triggers several rounds of chemotherapy, radiation therapy, and numerous hospital stays? Or is to maintain individual and public health—ensuring that people receive immunizations and cancer screening, along with treatment of high blood pressure and high cholesterol? We can begin to answer the question by looking at the example of one group in American society with universal coverage, the older population.

            Medicare (and its sister program, Medicaid, providing insurance coverage for poor people) went into effect on July 1, 1966, after what was effectively a 30-year battle. Franklin Roosevelt wanted the government to provide health insurance for everyone, but couldn’t make much headway with his idea; Truman campaigned actively for health insurance for all Americans, but his plan failed. Finally, after decades of wrangling, Congress and President Lyndon Johnson agreed to begin with those in greatest need: people who were either old, poor, or both. Medicare had the immediate effect of boosting the number of older people hospitalized—suddenly, they stopped neglecting that chronic cough that turned out to be lung cancer or decided to get medical attention for that stomach pain that proved to be an ulcer. The likely effect (though to be fair, it’s hard to disentangle the effect of Medicare from the effect of other concurrent changes) is that older people began to live longer—a lot longer. But what was really striking were the countless indirect ways in which Medicare promoted the health of the entire older population: for example, by promising to pay for effective technology, it stimulated the development of incredibly successful interventions such as the pacemaker and the artificial hip.

When we compare the health of Americans to that of their counterparts in other developed nations, we find, rather shockingly, that everyone else is generally better off than we are—if they are under 65. Among older people, the stark differences between the U.S. on the one hand and Europe, Australia, and Japan on the other hand vanish. The only plausible explanation is that older people in the U.S. all have health insurance, rendering them comparable to older people in other parts of the world.

            From a population perspective, ensuring that everyone has health insurance is desirable because health is desirable. Good health is like education: without it, we are not productive, creative, prosperous, or happy.  Health insurance is the means to assure good health, so just as public education is a means to a skilled labor force. Environmental regulations are the means to assuring a safer, more healthful country.

            From an individual perspective, health insurance is critical to well-being because it’s the gateway to good health. It’s simply not true that we can expect to stay perfectly healthy as long as we eat well, exercise, and lead a virtuous life. We never know when disease will strike, whether in the form of cancer or heart disease or a chronic neurologic disorder such as Alzheimer’s disease or multiple sclerosis. No matter how cautiously we drive, we cannot guarantee that a drunk driver won’t unexpectedly plow into us, causing no end of medical problems if we survive the crash. Nor can we expect that the cost of even routine medical care will be affordable: a plain x-ray, used to diagnose pneumonia and other lung conditions, typically costs hundreds of dollars when you add up the cost of the procedure and the cost of a radiologist’s reading. 
          Everyone needs basic medical care and it’s not just “catastrophic care” that is expensive. Hence, the rationale for covering each and every American isn’t just that health insurance only works when everyone shares the risk—though it is true that the only way to keep premiums manageable is for everyone, the sick and the healthy, to have coverage, rather than confining coverage to those who are known to be sick and are guaranteed to use huge amounts of service. The rationale for covering everybody is that health care is essential if we are to have enough energetic, healthy, educated workers to provide the services and the innovations that we all need, and the only way to make sure that everyone has access to health care is to provide insurance.

          Health care, and the insurance coverage to pay for it, isn’t a right, nor is it a privilege. But it is critical to promoting a strong, vibrant, capable citizenry.

A Success Story

In a research letter published this week in JAMA, geriatrician Susan Mitchell presents some startling—and encouraging—data. She reports that between 2000 and 2014, the rate of feeding tube insertion in US nursing home residents with advanced dementia fell from 11.7 percent to 5.7 percent.

It’s an achievement to be proud of—and even though the rate of feeding tube use remains high in blacks, the extent of the drop over the last 15 years is if anything more dramatic in the black population: for whites in nursing homes who developed advanced dementia and feeding difficulty, the rate went from 8.6 percent to 3.1 percent; for blacks in went from 37.5 percent to 17.5 percent. How and why did this dramatic change occur? 

Much of the credit goes to the work of Dr. Mitchell herself, who has tirelessly studied the use of feeding tubes in this population since the ate 1990s. Her initial foray into this field was a study with the somewhat inauspicious title, "The Risk Factors and Impact on Survival of Feeding Tube Placement in Nursing Home Residents with severe Cognitive Impairment." Published in what back in 1997 was called the Archives of Internal Medicine, it provided the first compelling evidence that, contrary to common sense expectations, performing a surgical procedure to provide ongoing artificial nutrition to nursing home residents who, in the course of developing advanced cognitive impairment, had stopped eating, did not prolong life. It wasn't a randomized controlled trial and it was confined to nursing home residents in the state of Washington, but it was a carefully conducted analysis of a reliable data base.

When the findings were confirmed in subsequent studies, Dr. Mitchell went on to examine the nursing home factors associated with tube feeding (on-site speech therapy, low aide to patient ratios, and evidence of poor quality care) and the clinical and organizational factors associated with tube feeding (for profit status, large size, and urban location). She looked at the financial incentives for feeding tube use (Medicare pays more) and the cultural factors associated with feeding tubes (facilities with a home like environment, a focus on food, specially trained aides, and an emphasis on advance care planning were much less likely to use them).  And she established that the development of difficulty chewing and swallowing is par for the course as dementia becomes very advanced. Many other investigators contributed to the subject as well: a search on Google Scholar using the phrases “artificial nutrition” and “advanced dementia” today produced 1340 hits.

But evidence does not always change practice, especially in an area as emotionally charged as the use of food and drink. During the same period that tube feeding use was falling in advanced dementia, we witnessed the spectacle of Terri Schiavo, a young woman in a persistent vegetative state, whose feeding tube was repeatedly inserted and withdrawn for seven years as her husband (her official surrogate) and her parents battled in the courts. What else accounts for the change in behavior and what can we learn from this experience about how to influence health care policy?

I suspect three factors played a role in moving the medical profession, hospitals, and the public towards a growing acceptance of palliative care--and away from technological interventions such as feeding tubes-- for individuals with advanced dementia.

First, physicians who cared for individuals with dementia were increasingly disturbed by the suffering that they saw inflicted on their patients from the growing acceptance of technological interventions. It wasn’t just feeding tubes; it was dialysis and ventilators and ICU care. Just as CPR had spread from use in otherwise healthy individuals who suffered an acute myocardial infarction, complicated by a ventricular arrhythmia, to all dying patients, so too did other invasive technologies proliferate due to “indications creep.” But it was bad enough to do something unpleasant to a dying patient who understood the intention behind the procedure or test; it was worse to do something painful or frightening to a dying patient who was by definition unable to understand its purpose (or intended purpose). As patient involvement in decision-making became more common and competent patients had the option of choosing or rejecting Hail Mary treatment, the plight of the demented patient became more poignant. Several of us wrote articles arguing that from an ethical perspective, there was no requirement to provide patients in the final phase of life with artificial nutrition and hydration. In fact, it was arguably this growing malaise on the part of physicians with the widespread use of burdensome technology in patients with advanced dementia that led to the burgeoning research on its effects.

Second, the field of palliative care has taken off during the last fifteen years. While much of palliative care focuses on cancer patients and on patients who are imminently dying, the discipline is in principle concerned will all serious, life-threatening illness. The growing acceptability of palliative care—as evidenced, for example, by Medicare choosing to pay doctors and nurses for advance care planning meetings—has brought a recognition that what we customarily do to and for patients near the end of life is not always what they want or what is most beneficial to them. Responding to eating difficulties in a patient with advanced dementia by inserting a tube rather than by limited hand feeding is just another example of the tendencies that palliative care challenges.

Finally, forgoing a technological solution to a medical problem is attractive because it saves money. A gastrostomy tube in the setting of advanced dementia is an example of an intervention that manages to simultaneously be useless, burdensome, and costly. We need to find more examples of widely used treatments that meet all three criteria, such as renal dialysis in frail older people. Feeding tubes for people who are dying of dementia is just the beginning. 

Sense, Common Sense, and Nonsense

Massachusetts has a problem with nursing home quality. A recent report by the Boston Globe found that a number of the state’s for-profit nursing homes provide substandard care—and pay their chief executives million dollar salaries. Earlier investigative journalism revealed that in several facilities, the trouble started when an out-of-state private equity firm bought the nursing homes. Previously high performing homes suddenly were cited for a variety of deficiencies, such as lax infection control and a rise in pressure ulcers (bed sores), which seemed to be directly linked to a corporate decision to cut the nursing staff. Then came a couple of disturbing deaths of residents, such as the case of an aide who accidentally dropped a resident, resulting in her death a few days later. The state Department of Public Health investigated. Fines were levied. And now the Massachusetts legislature is considering tougher laws to deal with the situation: higher fines, more draconian penalties for unsafe conditions in area nursing homes. Who could disagree with a strategy to promote basic health and safety standards in nursing homes—a standard we thought we had achieved after exposes in the 1980s led to sweeping federal regulation of nursing facilities (OBRA-87, the so-called “Nursing Home Reform Act”)? The goal is indisputable; the strategy is questionable.

The proposed legislative changes are billed as “common sense regulations.” Everyone seems to talk about common sense regulations these days, except the most extreme politicians such as Ted Cruz who want to get rid of all regulations. Republican presidential hopeful John Kasich touted as a model that he would emulate at the federal level the “Common Sense Initiative Office.” As governor of Ohio, he created this pro-business group which reviewed 2476 rules and rescinded or amended 1398. President Obama talks about common sense gun safety reform. Massachusetts governor Charlie Baker has recommended reforming the disaster-ridden Department of Children and Families by imposing common sense regulations. The list goes on and on. But the problem is that our intuitions about how the world works, our common sense solutions to how to make it better, are often mistaken.

If modern science has shown us one profound truth, it’s that behavior, whether of man or of molecules, is often entirely unexpected. Common sense told us that some illnesses were divine punishment for immoral behavior—after all, poor people living in crowded urban areas were more prone to various outbreaks than wealthier people living in sparsely populated rural areas. Common sense told us that some diseases were due to particulate matter, to something floating around in the “miasma,” and surely not to invisible, live microorganisms. Common sense told us that time has nothing to do with the speed at which you travel. Common sense told us that light is either a particle or a wave but not both. Common sense was plain wrong.

Health policy is similarly full of surprises. In the policy arena, we talk about “unintended consequences” of our actions. Now the fact that things don’t always turn out the way we planned doesn’t mean we shouldn’t plan. In the case of nursing homes, it doesn’t mean we shouldn’t have any regulations. But it does mean we need to evaluate whether our interventions have the desired effect. And in the case of substandard nursing homes, I strongly suspect, based on studies documenting the relationship between staffing ratios and quality of care, that better surveillance and tougher penalties are only a small part of the solution. What we really need is more staff and better paid staff. And that means higher levels of Medicaid reimbursement to nursing homes (the majority of long-stay residents are on Medicaid), which means that the states have to increase what they pay nursing homes.

Between 2009 and 2012, 40 states froze or cut Medicaid reimbursement to nursing homes, though these trends are gradually reversing. Massachusetts is considering, as part of the 2016-2017 budget, increasing its payments to nursing homes. How this provision will fare in the final budget remains unclear. It’s easier to use the stick than the carrot. But only careful study of whatever policies are instituted will reveal whether they’re working. So far, the evidence favors more and better staff as the best way to improve nursing home quality.

Where's the "Assist" in "Assisted Living?"

Assisted living (AL) exists for one very simple reason: most older people don’t want to live in a nursing home. They want privacy and autonomy, which nursing homes seldom offer. Despite all the efforts to put the “home” back into nursing homes, and despite the culture change movement that sought to transform the structure and organization of nursing facilities, most people still don’t want to live in a nursing home. One consequence is that assisted living facilities today are filled with people who not that long ago would have lived in a nursing home: they are old, they have multiple chronic conditions, and just about half of them have some degree of dementia. But assisted living facilities were created with the idea that they would be strictly non-medical residences. That’s a problem.

The tension between the idealized image of the assisted living resident and the actual assisted living resident increasingly translates into a struggle over what services AL can legitimately provide and who will regulate them. The rules are set by the individual states, so what happens in California is not the same as what happens in Alabama. In some states, only a licensed nurse can give a patient a medication. In other states, aides can give out medications. In some states, aides can supervise a patient taking a medication—they can remind the person he is supposed to take a pill and watch him doing it, but they can’t take the pill out of a bottle and give it to him. In other states, aides aren’t even allowed to do that. Periodically, state legislatures try to change the rules about just how medical AL should be. That’s what’s happening in Massachusetts today. Proposed legislation would allow AL to provide certain medical services that are currently unavailable: treating skin problems, providing wound care, giving injections, and administering oxygen. And predictably, conflict has erupted over whether the rules should be changed and if they are, who should be responsible for ongoing monitoring.

The controversy over whether and to how great an extent AL should be able to provide nursing care is usually framed as a concern about the medicalization of assisted living. The whole idea of AL is that it is much more like a person’s home than like a hospital and the concern is that if residents can have medical procedures on site, this will undermine AL’s home-like essence. But is that really the way to think about this issue?

After all, if an older person lives in his own residence, say the house where he has lived for the past fifty years, and his spouse gives him his medication, no one would object that his home has turned into a medical facility. Ditto if a family member applies skin cream to a rash. And does it turn the home into a hospital if a personal care attendant wheels in an oxygen tank and hooks it up to a mask or to nasal prongs worn by the older individual? Family members learn to give insulin injections. They are taught how to give artificial nutrition through a gastrostomy tube and to administer intravenous medication. They even operate all kinds of pumps and monitoring equipment. In fact, the report, Home Alone, issued a few years ago, found that almost half of all family caregivers reported that medical tasks formed part of their responsibility, including some pretty complex interventions.

Now nursing aides aren’t the same as family members. They take on whatever responsibilities they are assigned because it’s their job, not out of love or compassion or filial obligation. But the point is that if family members routinely perform these sorts of duties, in most cases with minimal instruction and no supervision, then surely aides hired by assisted living facilities could be expected to do precisely the same things, perhaps with a smidgeon more instruction and some degree of ongoing supervision. In any case, the act of putting on a bandage or attaching a bottle of Ensure to a feeding tube doesn’t automatically turn AL into a medical facility. But failing to letting aides do some of the tasks that people would expect their families to provide if they lived in their own home turns AL into a very inadequate sort of a home indeed.

Sometimes I think we draw the wrong conclusions about who can do what because we assume that the person who performs a given task should have a thorough understanding of the technology he or she is using. That would be nice, I suppose, but how many of us who drive a car have the slightest understanding of how the transmission works or the difference between a generator and an alternator? In the case of people taking medicines or getting treatment for a rash, we shouldn’t confuse administering treatment with monitoring effectiveness. I don’t see why the same person necessarily has to do both.

Years ago, I read a study of the use of psychotropic medications in the nursing home. The authors were shocked to discover that the nurses who gave out powerful medications had no idea of their side effects and couldn’t identify one if their life depended on it. I thought at the time and I still think today that the researchers’ dismay was misplaced. Someone should have been monitoring those nursing home residents: what was shocking was that nobody was. But did it have to be the person who doled out pills? Her job was to make sure that Sally Smith got pills that had been prescribed for Sally Smith—and not pills that had been prescribed for Stuart Smith. Her job was to make sure that Sally Smith got her pills three times a day and not twice or four times and that she actually swallowed the pills. Her job was to report to a physician if Sally Smith became very sleepy or was more confused that usual or developed difficulty with her walking—but not to figure out whether the pills were causing those problems.

The same goes for assisted living today. Of course people should be able to get simple “medical” treatment on site, just as they would if they had stayed in their previous home. Of course staff should be able to administer any treatment that family members routinely provide without an RN or an MD degree. Yes, staff need to learn how to do these things. And yes, a system needs to be in place to assure that patients—in this case we are talking about patients—have adequate monitoring of their medical problems. But let’s separate administration of treatment from ongoing assessment of the medical response to treatment. And let’s not transform the character of AL by subjecting it to the same rules as a nursing home. The way forward is to provide on site medical treatment while designing new rules that relate separately to the training and supervision of aides who are part of the staff and the provision of ongoing medical care by physicians and nurse practitioners who are not.