It's the Social Stuff, Stupid

Health care policy mavens are finally recognizing that we need to do a better job taking care of the sickest and costliest patients in American society. These are people on whom we spend a large percentage of our health care dollars without much to show for it, either in terms of standard health care outcomes or quality of life. Many of them have advanced illness. Many have multiple chronic diseases plus functional impairment plus extensive social needs. They’ve gotten the attention of people like David Blumenthal, who published an article called “Caring for High-Need, High-Cost Patients—An Urgent Priority” in the New England Journal in September and another article in JAMA sounding a similar call to action a few weeks later. They are the focus of the Coalition to Transform Advanced Illness, which produced a white paper mapping out a strategy for care and which just held a National Summit on Advanced Illness Care. Everyone defines the relevant population slightly differently and everyone makes somewhat different proposals for moving forward. One of the most creative is an idea that has been tried in England with good results.

This model gives high need patients a personal health care budget. The budget is determined by negotiation between the patient and the health care team. It “relies on a goal-setting and care-planning process in which patients and health care teams consider medical and social needs.” The budget allows payment for home supports and for technology that facilitates their remaining at home. It includes coverage for unusual and somewhat controversial non-medical needs such as a garden shed for someone with dementia so he could stay home because he had something to keep him occupied—the alternative was for him to become agitated and restless and quite likely require sedation and/or institutionalization. Interestingly, the budgets exclude access to primary care and hospital care, which are uncapped. Studies to date have found the system cost effective and associated with enhanced quality of life for the participants.

The result is not entirely surprising in light of the pioneering work done by Elizabeth Bradley and Lauren Taylor, popularized in a NY Times article in 2011 (and recently the subject of a book, The American Health Care Paradox.) What these researchers found was that though the US spends as much as 50% more than other developed countries on acute hospital care, imaging studies, lab tests, and other standard medical care, it spends much less than most other OECD countries on social services including old age pensions, disability, family support, and housing. If you combine the expenditures on both health and social services to give the true per capita spending in each country (with the amounts adjusted for GDP), it becomes clear why American health outcomes are so often inferior to those achieved in other countries: our total per capita spending is actually less than that of similar countries. The US over-invests in medical care and under-invests in social services.

A personal health budget that allows individuals to buy social services and other not strictly medical items that have the potential to enhance the coordination of care—a smart phone or a laptop, for example—is a way to compensate for America’s weakness. It fits into the prevailing ethos of individual control and of having “skin in the game.” 

If dressed up in sufficiently capitalistic sounding language, the proposal might even pass muster in a Republican-controlled federal government. It could finally transform care for the sickest, most vulnerable patients in the US health care system--and save money, too.

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American medicine is best at taking care of people who have a single, very serious disease. We’re even better at taking care of them when they are in the throes of an exacerbation of that disease, when we can control everything that goes into their bodies and monitor whatever comes out, usually in the acute care hospital, often in the ICU. That means, for example, patients with severe heart failure who develop acute pulmonary edema, or people with leukemia who are in “blast crisis.” People who have multiple interacting conditions or one disease that isn’t necessarily fulminant but affects many aspects of their daily lives—those are the people we’re not so good at taking care of. And it turns out that these ill-defined groups of people not only get mediocre medical care, but they also cost the health care system a great deal of money.

It’s finally become clear to a number of influential health policy types that this group deserves attention—doing a better job caring for them could potentially improve health and save money. David Blumenthal, president of the Commonwealth Fund, recently published an article in the New England Journal of Medicine saying it was time we paid attention to “high need, high cost” patients. CTAC, the Coalition to Transform Advanced Care, just held a national forum on “advanced illness care,” advocating payment and delivery reform of the most vulnerable patients. CAPC, the Center for Advancing Palliative Care, has for a number of years promoted the use of “an added layer of support” for patients with “serious illness” throughout the course of their disease. But how can we identify just who it is who stands to benefit from the kind of care that all these groups recognize as crucial: integrated, coordinated, team-based, and patient-centered care?

Our neighbors to the north have long recognized the importance of frailty as a concept that gets at what’s common to people with multiple co-morbidities, patients with one advanced illness, and some patients who have dementia or mental illness. What’s unique about frailty is that it identifies patients who are vulnerable to external stresses. It doesn’t matter whether the vulnerability arises from the interaction between several different medical conditions or the effects of a single disease on many bodily functions; it’s the precariousness of their condition that makes frail people both difficult and costly to care for. 

Dr. Kenneth Rockwood, together with colleagues at Dalhousie University in Canada, has developed a powerful Clinical Frailty Scale that categorizes patients based on a mixture of disease burden and function. Studies show the Clinical Frailty Scale can predict decline and mortality among community dwelling older individuals; it can predict unplanned hospitalization and death in outpatients with cirrhosis; and it can predict length of stay in older patients admitted to the acute medical service of a general hospital. But a Google search fails to turn up a single article in which the CFS is used in a US hospital. It’s been tried in Australia. It’s used in Canada. But not the US. Why not?

Let’s have a look at the CFS. I think it offers some clues:

Two observations about the scale. First, although the outcome is quantitative (every patient gets a score between 1 and 9), the assessment that goes into determining the outcome is fundamentally qualitative. Second, and not unrelated, there’s no way the score can be computed from information already entered into an electronic medical record. That’s because the rating is not based on things like the serum albumin or the mini-mental score. It’s based on one person, a clinician, deciding which of 9 very short, illustrated descriptions best fits another person. There’s nothing complicated about the process—a good primary care physician be sufficiently knowledgeable about his patient to determine the answer without asking doing any kind of special evaluation, and even a not-so-good primary care physician should be able to find out enough to choose the best description after 1 or 2 minutes of questioning. But introducing the CFS into the practice of medicine in the US would require physicians to be aware of their patients’ level of functioning in everyday life, not just the functioning of their individual organs. And it would require accepting the notion that sometimes qualitative reasoning trumps the quantitative. Both concepts are alien to standard American medicine.

CTAC and CAPC and all those others who argue that we need to do a better job caring for our most medically vulnerable patients—for the sake of their well-being and for the sake of our pocketbook—argue about what exactly is wrong with the patients they want to serve. Are they dying? Do they have lots of problems? Are they suffering from advanced illness? I would argue it's not just people who are dying, though many of the most vulnerable are dying. It’s not just people with multi-morbidity, though many of the vulnerable do in fact have multiple conditions. And it’s not just those with advanced illness, though many of the most vulnerable have an advanced illness. It’s people whose illness(es) affect sufficiently many aspects of their daily functioning that they have become frail. 

Frailty is the final common pathway, whether you're frail because of dementia or metastatic cancer or Parkinson's disease or some combination of arthritis, diabetes, and COPD. So let’s borrow from our northern neighborhood and begin using the Clinical Frailty Scale. It’s really very simple.

Modernizing Medicare

The Medicare Modernization Act of 2004 didn’t really modernize Medicare. It took the important step of creating coverage for prescription drugs, which are the backbone of medical treatment of older individuals. But apart from this one change, albeit a major one, Medicare was pretty much intact. The problem with the approach to healthcare enshrined in Medicare, a program that turns 40 this year, is that it assumed that most illness is acute illness that requires hospitalization. In fact, it including coverage for anything other than hospital care in Medicare was more or less an afterthought. But today, most illness is chronic illness and the sickest, costliest patients typically have multiple chronic conditions.

The good news, as summarized in a perspective in JAMA this week entitled “Optimizing health for persons with multiple chronic conditions,” is that Medicare has made a number of changes that move the program into the modern world. The article indicates that the government report, “Strategic Framework on Multiple Conditions,” released in 2010, articulated 4 goals: fostering health systems change, empowering individuals, equipping clinicians, and enhancing research. Funds from the Recovery and Reinvestment Act and the Affordable Care Act have gone a long way to supporting initiatives in each of these domains. For example, in the realm of health systems change, the Centers for Medicare and Medicaid Services (CMS) is financing integrated models of primary care; to empower individuals, government funds have supported widespread participation in Stanford’s Chronic Disease Self-Management Program; to help clinicians, many professional societies have issued guidelines that are modified for patients with multimorbidity; and to enhance research, the Patient Centered Outcomes Research Institute (PCORI) was created and is a primary source of research funding. But there’s a problem.

The problem is that the patients we really need to worry about—because they get poor quality care, they cost a great deal, and despite all the money we spend on their medical care, they don’t even get treatment that is consistent with their preferences—aren’t patients with 2 or more chronic diseases. As the authors of the JAMA article comment, we need to focus on patients who are at greatest risk of poor outcomes and high costs. The patients we need to pay most attention to are those who are old and frail. And while many people who are old and frail also have multiple chronic diseases, not all of them do; moreover, having multimorbidity is not sufficient to qualify as frail.

The trouble with frailty is that we don’t have a good way of measuring it. And the measures we do have, which include such things as how strong a person is or how quickly he can walk, aren’t anything that doctors routinely test for, let alone record in the medical record. Insisting that all doctors use electronic medical records won’t allow us to keep track of who’s frail if we don’t enter frailty (or the various measures that define it) into that record. There is now a way that primary care doctors can screen for frailty by asking patients 5 questions, and their answers, while subjective, seem to correlate quite well with more sophisticated tests for frailty. But right now, doctors don’t ask those questions (they include things such as “are you able to walk up a flight of stairs” and “are you exhausted all the time”). Unless we can determine who is frail, we are not going to be able to test the effectiveness of special programs intended to provide medical care for them.

I think a solution may be on the horizon—and it’s not shipping special calipers to measure grip strength to every primary care doctor in the country. The answer, I suspect, is to use a proxy measure for frailty. That surrogate measure is multimorbidity plus functional impairment. It turns out that the people who are hospitalized most often, who take the most medications, and who go to physicians most frequently are people who have at least two chronic diseases and who have trouble with one of their activities of daily living.  

We can refine this group even further by focusing on those who get help with a basic daily activity: 14% of the population or 42 million people have at least one chronic disease and a functional limitation, but only 14 million of them need assistance to get by, and of those, 8 million are 65 or older. And those who have 5 chronic diseases and get help (regardless of age) have average per capita health expenditures of $22,380 compared to $12,749 for those with 5 or more chronic diseases and functional limitation but no help and to $9,723 for those with 5 or more chronic conditions but no functional limitations. 

It’s time to track patients who are over 65 by the number of chronic conditions they have, whether they have functional limitations, and whether their functional limitations are sufficiently severe to require assistance. Only then will we able to determine if these measures define who is at highest risk for adverse reactions to hospitalization, for progressive disability, and for death, and who costs the health care system the most money. Only then will Medicare be able to pay for the right kind of care for all older people. Once we do that, we will have truly modernized Medicare.

The Robot Will See You Now

“Disease management” is all the rage. The reason? In the US and other developed countries, most diseases are chronic rather than acute and chronic diseases can generally be treated but not cured; ergo, they need to be “managed.” Interesting that it’s the disease that’s supposed to be managed rather than the patient. In any event, despite the popularity of the concept, disease management programs haven’t proven terribly effective: one review of 35 Medicare-funded projects in 22 states involving 300,000 patients showed that most did not improve the quality of care or reduce the cost of treatment.  Nonetheless, with the continuing growth in the number of people with chronic diseases—68% of Medicare patients have at least 2 chronic diseases and 14% have six or more—disease management remains popular as a common-sense approach that seems as though it ought to work. And a study in this week’s Annals of Internal Medicine suggests that maybe it does.

The article is a “systematic review and meta-analysis,” or an attempt to get at the truth by combining findings from many different studies. As an aside, the authors initially identified nearly 3000 articles about disease management, but ended up analyzing only 18 since the overwhelming majority were not of sufficiently high quality to be worth including. These 18 clinical trials all used “nurse-managed protocols” to guide the outpatient treatment of such diseases as diabetes, high blood pressure, and elevated cholesterol. The results? Use of these protocols by nurses led to small but statistically significant falls in blood sugar levels, blood pressure, and LDL (the “bad” cholesterol). The article concludes that nurses “are in an ideal position to collaborate with other team members in the delivery of more accessible and effective chronic disease care.” In other words, nurses should take over the function of managing chronic disease.

I have no reservations about handing over large chunks of primary care medicine to nurses—in fact, I think that nurses, particularly nurse practitioners, are better suited to primary care than many physicians and should do more than just follow flow charts. If all that's needed is to stick to clearcut guidelines, then a smart machine would be better than a nurse. But I do have concerns about the mindless application of algorithms to patient care, at least for older patients with multiple chronic illnesses. In younger, less complicated patients, preferably those with only a single disease that requires managing, simply following the optimized treatment strategy is likely to be a good idea. But in older patients with “multimorbidity,” as having multiple chronic conditions is increasingly called, practicing algorithmic medicine leads to disaster.

Suppose I’m seeing an 85-year-old woman with high blood pressure and diabetes and Parkinson’s disease. Call her Janet Dover. Optimal medical management of the high blood pressure means use of a diuretic. Tight control of diabetes means keeping the average blood sugar down, even if that means occasional dips to dangerously low levels. And control of Parkinson’s disease involves using a drug such as Sinemet. But there’s a problem with giving this patient a diuretic and a hypoglycemic agent and Sinemet all together, even if each individually would be a good idea. Both diuretics and Sinemet tend to make blood pressure fall when a person stands up and low blood sugar tends to make a person unsteady on her feet. So give Mrs. Dover all 3 medicines and the next thing you know, she will stand up, be dizzy and off balance—and then she will fall and break her hip.

Good geriatric care is all about figuring out how to treat someone like Janet Dover. It’s not easy and it depends both on her particular combination of diseases and on her willingness to make certain tradeoffs. But it’s not something that can be done by following a protocol, whoever is in charge of the protocol.

Lotsa Lumps

Geriatrics would be a good deal easier if every older person suffered from just one medical condition. But most elderly people have more than one chronic disease and the older they are, the more chronic conditions they are likely to have. Since “multiple chronic conditions” is a mouthful, researchers coined the term “multimorbidity,” an only slightly less awkward way of expressing what is probably one of the most critical features of geriatric existence. It’s so critical because the best medical treatment, known as “evidence-based medicine,” is founded on studies of patients who don’t have multimorbidity at all. They are generally perfectly healthy except for the single disease being studied. So when we tell a patient that “studies show’ that blood pressure should be below 140 and that the best medication to take if the blood pressure is elevated is a diuretic, we mean that if the only problem is high blood pressure, then taking the diuretic is the best way to lower the risk of bad outcomes such as strokes and heart attacks. But if the patient also has another chronic condition, say Parkinson’s disease, which is being treated with the medication L-dopa (Sinemet), then giving that patient a diuretic to lower blood pressure could backfire—long before any heart attacks or strokes were prevented, the patient might fall down (both L-dopa and diuretics contribute to sudden falls in blood pressure when a person stands up) and break a hip. Simply assuming it makes sense to apply multiple guidelines to a patient with multiple problems can result in medication lists a mile long that cost a fortune and that cause more problems than they solve. So multimorbidity is a big deal in geriatrics. Now, for the first time, multimorbidity is getting the attention it deserves.

A couple of years ago, the American Geriatrics Society set up a task force to develop an approach to multimorbidity for physicians. This group generated a report that lays out the basic principles that should underlie care for a patient with multiple chronic conditions. And a recent symposium brought together physicians and researchers from a variety of backgrounds to come up with strategies for generating a better evidence base, for designing new guidelines, and for carrying out appropriate systematic reviews for patients with multimorbidity. The results of the symposium are published as 3 articles along with an editorial in the April issue of the Journal of General Internal Medicine. 

I wish I could report that these new guidelines-for-producing- guidelines came up with the solution to the problem of multimorbidity. I wish I could summarize the gist of these papers. They constitute a valiant attempt to find an answer to a vexing problem. They go far in enumerating the many obstacles to a solution. They provide an exhaustive list of all the issues that must be addressed in the future. But in the end, they advocate a technical solution to a dilemma that can only be addressed by eliciting patient preferences and by use of clinical judgment.

There are just too many different clusters of chronic diseases for physicians to come up with recommendations that clearly and unambiguously apply to a given patient. Consider just the 10 most common chronic diseases. For any group of 10 diseases, there are 45 pairs of diseases and 120 groups of 3 diseases and 210 groups of 4 diseases—and that doesn’t include clusters of greater than 4, even though plenty of older people have, say, arthritis, diabetes, heart disease, emphysema, and kidney problems. Even if it were practical to design a guideline for all the most common groupings, which it isn’t, that wouldn’t be good enough. What matters is not just how many diseases you have, but how sick you are and how well you can go about your day to day business (what geriatricians call your functional status). Someone who lives independently and shops and cooks for herself is in far better shape—and able to withstand a new medication or a brief hospitalization—than her counterpart with the same underlying chronic conditions who lives in a nursing home and needs help with all her daily activities.

I tend to agree with an article in the British Medical Journal that argues that “multimorbidity introduces clinical uncertainty in a way that is unlikely to be resolved by ever more sophisticated guidelines.” The authors advocate listening to patients to find out what matters to them and using clinical judgment to try to achieve their ends. A similar recommendation came from the American Geriatrics Society task force,  which even created a pocket card summarizing their key conclusions: consider patient preferences, consider prognosis, consider interactions among treatments, review the entire care plan, and communicate and decide on treatment together with patient and family. 

More research that measures quality of life outcomes as well as survival outcomes is of course important. But empirical studies alone will not solve the multimorbidity problem. Talking to patients about their overall health status and their goals of care, and figuring out together what tests and treatments make most sense in light of their status and their goals, just might.