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.

Is Medicare Entering the 21st Century?

       The do-nothing Congress may be doing something. In the immediate aftermath of the Senate’s third and hopefully final failure to “repeal and replace” the Affordable Care Act, the Senate actually passed a health care bill unanimously. With little public fanfare, it approved CHRONIC (the Creating High Quality Results and Outcomes Necessary to Improve Chronic Care Act of 2017). This bill, if it is not eviscerated or rejected by the House, takes a few important steps in the right direction.

         As a useful summary in the Health Affairs blog explains, the bill supports changes in four domains: home based care, managed care, telehealth, and accountability. In the arena of home based care, the law extends the successful “independence at home” demonstration project for two years, increasing the number of participants from 10,000 to 15,000. This is a relatively small modest program that does something critically important for some of our sickest and most complex patients—it moves the nexus of care from the hospital and the office into the home.

         In the area of managed care, the law does something quite remarkable. It incentivizes further use of Medicare Advantage programs, a long-standing Republican objective since they see Medicare Advantage as a way of privatizing Medicare. But one of the ways it does this is to allow programs to expand benefits to include social supports and help with activities of daily living. It’s a tiny wedge that could signal the beginning of a recognition that social factors contribute to health. This is the message of the book, The American Health Care Paradox by Elizabeth Bradley and Lauren Taylor  in which they argue that the reason Americans spend so much more per capita on health care than any other developed nation—and achieve poorer results—is that we substitute medical benefits for social benefits, to the detriment of well-being. We are a long way from allowing federal money to be used to pay for gardening supplies, say, so that a person with dementia would be happy puttering around at home and not become agitated and restless, perhaps triggering pharmacological treatment or even nursing home care, as has happened in the UK. But it’s a start.

         The telehealth expansion is another one of those strategies, such as electronic medical records, that on the surface is very appealing, but for which the evidence of effectiveness is mixed. It feeds nicely into the conviction that there are technical fixes to the American health care system, rather than major structural problems that must be addressed. Probably not the best use of scarce resources, but not a terrible idea.

         Finally, the Act mandates that the GAO carry out three investigations to assess the consequences of various strategies that have been piloted or proposed. One of these is a special reimbursement code for physicians to formulate a comprehensive care plan for patients with certain serious conditions. Another is whether Medicare Part D should lift its ban on drugs that help patients lose weight. The GAO is usually thorough and unbiased in its evaluations. All sound efforts at systematic evaluation—as opposed to wholesale, uncritical adoption of policies and programs—should be supported.

          Will the House pass the bill? Will it discover the most interesting parts of the legislation, ie the provision that lets Medicare Advantage programs offer benefits that are not “medical” in the conventional sense? We shall see. Tell your representative that if s/he wants to take credit for something, this would be a good place to start.

The Hardest Job

When I searched the web for images of "caregiving" and "dementia," all I found was pictures of happy people: happy men and women who supposedly had dementia together with their happy family members or with hired caregivers:

The reality is very different. All caregiving is difficult. Caring for people with dementia is specially difficult. And caring for people with dementia and behavioral problems is really tough.

A staggering 52 million Americans care for an adult with disability or illness. They do all kinds of things for their relative, most often a parent or sibling, including taking on medical responsibilities. In addition, many have jobs outside the home, sometimes full time jobs. Caregiving takes a toll on their physical and mental health: it is associated with depression, isolation and even, in some studies, an increased risk of hospitalization and death. But a recent report that is a spin-off of the previously issued survey, HomeAlone, brings home the magnitude of the challenge for caregivers of individuals of people with dementia and difficult behaviors.

What makes taking care of someone with dementia and behavioral abnormalities so difficult is that these individuals are sicker than other adults. Along with behaviors such as pacing, wandering, spitting, refusing care, and sometimes smearing feces or hitting, they have heart disease and lung disease and other chronic illnesses. Figuring out that someone is feeling short of breath or having pain, the kinds of problems an older person with chronic disease is apt to develop, is very hard when that person cannot express what he or she is feeling. Once you’ve determined what the problem is and what you have to do to help, you have to struggle to do what's needed--things such as putting on an oxygen mask of giving an injection. And odds are, you will need to do a lot: fully 68% of those with dementia and behavioral problems have high blood pressure or cerebrovascular disease, 58% have some kind of musculokeletal disorder (most commonly arthritis), 45% have a cardiac problem, and 32% have diabetes. 

As the caregiver for someone with dementia and behavioral problems, you are even more likely to need to do all those medical things that other caregivers report: wound care (33% of caregivers report doing this), medication management (85%), and operating medical equipment including home dialysis, a ventilator, or an oxygen machine (20%). The caregivers surveyed in the new report indicated that they found dealing with wounds and providing incontinence care among the hardest things they had to do—and that they had little or no training. They also reported a significant effect on their quality of life.

The report concludes with several common sense recommendations: provide respite for caregivers, offer training in responding to challenging behaviors, and educate clinicians to ask about caregiver distress. But I would add one more recommendation: help caregivers partner with clinicians to identify and manage common acute medical problems. Precisely because people with complex dementia (that is, dementia that causes behavioral issues) usually have other medical conditions, they are at high risk of being brought to the Emergency Department or being hospitalized. And the hospital is often a risky place for older patients with dementia, as I have often argued in this blog. Moreover, many patients with dementia probably would not want hospital care—if they could understand the inevitable downhill trajectory of their underlying condition, and if they had a viable alternative. Care at home is a viable alternative, but only if we educate caregivers so they are able to manage medical problems at home. 

Giving caregivers the knowledge and skills to provide home medical care, would improve the quality of life of their relative with dementia, would likely alleviate their own stress by allowing them to feel in greater control, and would save money. So why aren't we doing anything to help?

More or Less

True or false?

1) Medications have led to improved health (T)

2) Medications are helpful for many chronic conditions (T)

3) Most older patients have several chronic diseases (T)

4) Most older patients take many medications (T)

5) More pills mean better health (F)

Sometimes, less is more. For patients with advanced dementia, most of whom are in their eighties and many of whom have other chronic conditions such as high blood pressure or high cholesterol, it just doesn’t make any sense to take all the drugs that are usually prescribed for them. In a recent article in JAMA Internal Medicine, researchers looked at a large sample of nursing home patients to determine the proportion taking medications “of questionable benefit.” What they found was that over half of nursing home residents with advanced dementia were taking at least one such drug.

We could get distracted by methodological concerns: after all, the classification used by the researchers was based on the consensus of experts, who in turn relied on whatever data were available, which was virtually never high quality, randomized clinical trials. Moreover, these experts assumed that for patients with advanced dementia, a “palliative orientation to care,” is appropriate, though this is not necessarily what the patients’ surrogate prefer. But the point, as the authors of the current paper argue, is that commonly used medications such as lipid lowering drugs and chemotherapy are at the very least “of questionable benefit.” In fact, as suggested by the editorial accompanying the article, the overuse of medications in advanced dementia is just the tip of the iceberg. Medications of questionable benefit are commonplace in frail elders and older people with moderate dementia, not just in those whose dementia is so advanced that death is imminent.

Greg Sachs, Chief of Geriatrics at Indiana University, proposed a framework for thinking about whether a medication is useful in an older person. He suggested beginning with life expectancy. Older people who are in excellent health and can expect to live for another 5 or 10 years are very different from those who are in the last year of life since some medicines work by immediately ameliorating symptoms and other medicines will only provide benefit after they’ve been taken for years. This leads to the next question: what is the lag time before a medication achieves the desired effect? (Pain medicines, for example, are effective within hours or at most days; some antidepressants work within days, others take weeks to kick in; medicines to control cholesterol are generally intended to prevent heart disease years in the future.) Finally, what are the patient’s goals? Is the patient interested in a longer life, no matter what price he has to pay, in which case he might want to take a medication with a small chance of working and a high risk of side effects (such as certain chemotherapy drugs)? Or is he interested in maximizing quality of life, in which case he might want a medication that makes him feel better regardless of the consequences for his length of life (choosing, for example, pain medication over chemotherapy for cancer).

Deciding whether or not a particular medication makes sense for a given older individual is not always easy. But it’s crucial to realize that more is sometimes less. More medications mean more opportunities for dangerous interactions among drugs. The greater the number of medicines, the greater the risk of an adverse drug reaction. Optimal drug regimens are generally determined by studying younger patients who have only one thing wrong with them—the disease to be treated with that medication. Extrapolating to older people, whose bodies handle drugs differently from their younger counterparts, who have multiple illnesses, and who may have a limited life expectancy, is perilous. Prescribing many medications for the elderly can be an excellent way to treat their diseases—but it might be a trick.

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.