December 14, 2014

Compare and Contrast

I’ve long wondered how the US compares to other developed countries in providing medical care for older people. Our overall performance in the health care domain, when compared to the achievements of countries such as Australia, Canada, France, and Switzerland, has regularly demonstrated deficiencies —but many of these are related to the enormous number of uninsured individuals in the US. Seldom were people over 65, who in the US are almost all covered by Medicare, considered separately. At last, the Commonwealth Fund, which has carried out many of the previous surveys, looked into the situation for older adults. The results are illuminating.

First, the good news. The US is not at the bottom of the list on all of the indices, just some. Compared to the other 10 countries (Australia, Canada, France, Germany, the Netherlands, New Zealand, Norway, Sweden, Switzerland, and the UK), the US did quite well in a few areas. Older Americans rarely had to wait over a month for an appointment to see a specialist (only 14% reported such a long wait, compared to more than half of the respondents in Canada and in Norway). Fewer American elderly patients reported problems related to discharge planning after hospitalization—issues such as inadequate follow up or lack of information about their medications (28% did have problems, however, but this compares favorably to 70% in Norway and 67% in Sweden). And despite all the discussion in the US about the lamentable state of advance care planning, far more American older patients reported having had a discussion with someone about the care they would want if they became very ill and could not make decisions for themselves than did their counterparts in other countries (78% of Americans said they had had such a conversation, compared to 20% in Norway and 12% in France). The majority of Americans (67%) said they had designated a health care proxy, whereas the percentages were below 10% in Scandinavia and in the 25% range in New Zealand, Switzerland, and the UK. 

And then the bad news. Despite universal coverage, a sizable fraction of older Americans have substantial out of pocket expenses for health care, expenses that they often cannot meet: 19% said they had cost-related access problems in the past year, 21% said they had out of pocket expenses of $2000 or more, and 11% said they had trouble paying their medical bills. The corresponding figures in all the other countries were far lower except for Switzerland, where patients reported high out of pocket expenses but said they did not have problems paying them. In addition, nearly a quarter of American older patients reported that test results or records were not available at their appointment or that duplicate tests were ordered; this occurred far more rarely elsewhere. Getting a next day appointment when they were acutely ill was difficult for Americans, making them worse off than patients in France, Germany, the Netherlands, New Zealand, Switzerland and the UK—and leading to excess use of emergency rooms.

Finally, the surprising news: older Americans reported higher rates of chronic disease than anyone else: fully 87% said they had at least one of seven major conditions and 68% had at least two. By contrast, only one-third of older adults in the UK said they had multiple medical problems. Either Americans are more knowledgeable about their medical problems (the entire survey depended on self-report), or Americans are just sicker.

Interestingly, all the patients interviewed were pretty happy with their medical care: most everyone felt the doctor spent enough time with them and that they had a plan for self-management of their disease.

So what should we make of all this? The report is based entirely on computer-assisted telephone interviews of a random sample of people 65 and over. Relying on self-report may give a biased view of the medical care these patients actually received. But at the very least, the report offers the opportunity to look at what’s different in the health care systems in which patients are very satisfied with their care. England, for example, outperformed the US in self-management of chronic conditions and in England, the vast majority of primary care practices used nurse case managers or navigators for the patients with the most serious problems. France, which had particularly good care coordination, has a special program that incentivizes primary care physicians and specialists to develop shared care plans. In countries with better access to care, it is either free at the point of service or free for most chronic conditions, or subsidized for low-income individuals. 

If we have the humility to acknowledge that we’re not always the best, maybe we could learn something from our friends.

December 10, 2014

US vs Them

This is how the US compares to other OECD countries in education; for a report card in healthcare for older patients, see blog posting this weekend.

December 07, 2014

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?

December 03, 2014

November 23, 2014

A Matter of Opinion

In an op-ed in the New York Times this week, my fellow Harvard physicians Pamela Hartzband and Jerome Groopman argue that it’s pernicious to reward physicians for meeting quality standards. These measures of performance, they say, are “population-based and generic, and do not take into account the individual characteristics and preferences of the patient or differing expert opinions on optimal practice.” Really? Are there no practices that physicians should routinely follow if they are to practice good medicine?

The answer revolves around the concept of “preference sensitive care,” articulated by Jack Wennberg and Elliott Fisher of the Dartmouth Center for the Evaluative Clinical Sciences. Preference-sensitive care involves treatments that involve significant tradeoffs affecting the quality and or length of life. It is contrasted with effective care, which involves essentially uncontroversial treatments that are unambiguously optimal, or for which there are no viable alternatives. What Hartzband and Groopman are arguing is that essentially all care is preference-sensitive and there is no such thing as effective care. Therefore, they conclude, there is no way that we can legitimately grade treatment as inherently good or bad—it either reflects patients’ wishes—or physicians’ recommendations—or it doesn’t.

The view that there are no medical practices that constitute “effective care” and that all medical care is preference-sensitive strikes me as profoundly misguided. In 2003, RAND evaluated the quality of medical care in the US and found that only 55% of adult patients surveyed by telephone had received recommended medical treatment. These treatments included counseling on smoking cessation to patients who had had heart attacks and long-acting inhalers for people with chronic asthma. Did the 45% of patients who did not get standard treatment actually receive care that, while not consistent with expert recommendations, conformed well to their preferences? Could 45% of physicians have deliberately and thoughtfully chosen a course that deviated from expert recommendations because they had unique insight about what was best for their patients? Is there a plausible reason why physicians should not advise cardiac patients to stop smoking or patients with at least moderately severe asthma to use inhalers? I doubt it.

What about older people? Perhaps this is one population where most treatment is preference-sensitive. After all, as I have often argued in this blog, what makes sense for people who are frail, dying, or have dementia depends heavily on their goals of care. Even a seemingly clear-cut decision such as whether to have surgery for a broken hip might have a values component. A patient who is dying, for example, and whose only goal of care is his comfort, might choose to have bed rest and pain medication rather than the rigors of surgery. So are there quality indicators, those “metrics” that Hartzband and Groopman vilify, that apply to the geriatric population?

I looked at the most recent HEDIS (Healthcare Effectiveness Data and Information Set) measures, the set of indicators used by health insurance companies throughout the US to evaluate physician performance. These were designed by the NCQA (National Committee for Quality Assurance), a non-profit, non-governmental, independent body that relies on expert judgment and public feedback to determine quality indicators. It turns out that there are 5 HEDIS measures for older adults, addressing physical activity, pneumococcal vaccination, osteoporosis testing, medication management, and fall risk management.

The 5 domains were chosen for good reason. Physical activity plays a role in maintaining physical function as well as in staving off depression, cardiovascular disease, and other chronic illnesses common in old age.
Pneumonia is very common in the elderly and it’s a killer. When it doesn’t kill, it causes shortness of breath and confusion, often resulting in hospitalization, and may trigger other conditions such as a heart attack. Osteoporosis is responsible for tremendous suffering, mainly in the form of pain and impaired mobility, and predisposes to fractures. Falls, like osteoporosis, are the cause of an enormous amount of misery in old age. Nobody, and I mean nobody, wants to fall, just as nobody wants to have osteoporosis. Medications are commonly used by older people—on average, they take about 5 prescription drugs—and the more medications a person takes, the greater the likelihood of side effects.

If the targets are reasonable, are the specific quality indicators themselves? In general, the answer is yes. The pneumonia metric, for example, looks at the percentage of adults 65 and older who report ever having received a pneumococcal vaccination. The only people for whom getting a pneumonia shot doesn’t make much sense are those who are dying. And even patients who are dying presumably weren’t dying a year or two years ago, at which point they should have gotten immunized against pneumonia. Since the measure asks if a person has ever been vaccinated, the only older patients for whom this is inappropriate are those who develop a lethal illness at age 65 or those who regard life as worse than death (usually also people with a fatal illness) and who hope they will get pneumonia. There will always be people who refuse the shot out of a misguided belief that it will cause them harm. Some people will have religious objections—though I have yet to find an established religion that forbids vaccination (the exception is Christian Scientists but they aren’t likely to go to doctors in the first place). So physicians will rarely achieve a score of 100% on the vaccination metric. But the question is not whether vaccination can always be achieved; it’s whether vaccinating against pneumonia constitutes good medical practice.

It would be nice to have separate measures for patients  who are near the end of life, for those who meet the criteria for enrollment in hospice (whether they have chosen to enroll or not). At the very least, for patients with a limited life expectancy, the physician should be able to indicate that the quality indicators are “not applicable.” But apart from this concern, the quality measures strike me, on balance, as entirely reasonable.

According to a report just released by the NCQA, 54% of the US population (171 million people) now have health insurance from a plan that uses HEDIS measures. Over the last 3-5 years alone, 46% of the HEDIS measures have shown consistent, statistically significant performance gains. Surely this is progress. Some treatment decisions are preference-sensitive and for these cases, we should find a way to determine if physicians are eliciting their patients’ preferences and treating them accordingly. For those treatments that constitute “effective care,” the quality indicators make good sense.

November 20, 2014


Are all treatments Preference SenSitiveTreatments (psst)? See commentary this weekend.

November 16, 2014

The Five Percent

It’s a dirty little secret that nobody other than professional geriatricians and palliative care doctors seems to know. But inside those circles, most everyone is aware that palliative care is an up and coming field that has tripled in size since 2000, while geriatrics is floundering, with fellowship training slots going unfilled in recent years and the number of board certified geriatricians declining. So an editorial in the Journal of the American Geriatrics Society advocating that the two disciplines work together to promote a joint agenda set me to thinking: why the difference? 

A slew of factors have contributed to the success of palliative care. As Dr. Diane Meier points out in her editorial, the decision to push the field by “making the business case” to hospital CEOs rather than by focusing on getting NIH research funding was crucial. The creation of CAPC, the Center to Advance Palliative Care, which focused on leadership training and skills development, was a brilliant innovation. But I couldn’t help wondering whether the different trajectories of palliative care and geriatrics, which both address the needs of the 5% of the population who are the sickest—and who use half of all health care resources—could be traced in part to different attitudes toward the old and toward the dying. An article by geriatrician Dr. Louise Aronson in a new series of groundbreaking articles on aging in the Lancet suggests attitudes matter. 

Dr. Aronson quotes the comments of Dr. Robert Butler, in many ways the founder of contemporary geriatrics, that “aging is the neglected stepchild of the human life cycle.” Writing 40 years ago, Butler made the case that “ageism” allows people to distinguish themselves from older people, to see themselves as safe from the debility and decline that afflict many in the final phase of life. Aronson tells several anecdotes to emphasize that the disdain for old people persists in medical circles today: a surgeon who laughs at a student who says she wants to go into geriatrics and jokes that the “disease” the student will specialize in is “constipation;” a senior physician joking that the best way to avoid the adverse consequences of hospitalization in the elderly is “never to build nursing homes within 100 miles of hospitals.”

I remember that my decision to do a fellowship in geriatrics was met with the same mix of derision and incredulity 30 years ago. Another young doctor in my medical residency program gave me an extremely backhanded compliment: “But you’re very smart,” she said, “so why would you go into geriatrics?” Could it be that palliative care is thriving because we are ready to face dying but geriatrics is struggling because we are unwilling to face what comes before the end?

Aging is one of the greatest challenges faced in the world today. Throughout the world, people are living longer. Falling fertility rates and rising life expectancy have led to an aging population in the developed world, but the same phenomena are striking the developing world with a vengeance: in the US, it took took 68 years for the proportion of the population over age 65 to double and in France it took 116 years—but in China, it will happen over a period of 26 years and in Brazil in a mere 21 years.  The demographic shift has been accompanied by a shift in the “global burden of disease:” in 2010, 23% of the total disease burden in the world was attributable to disorders in people over age 60. The most burdensome disorders afflicting our aging world include heart disease, stroke, chronic lung disease and diabetes, as well as lung cancer, falls, visual impairment, and dementia. The good news is that we already know a great deal about what we need to do to increase the “lifespan,” as one of the commentaries in the Lancet series calls the length of time that an individual is able to maintain good health. 

We need to use a conceptual framework that focuses on functioning rather than on disease. We need to build and support an appropriately trained workforce—both formal and informal (ie family) caregivers. A comprehensive public health strategy must taken into consideration the physical and the social environment. It needs to be grounded into an approach that begins with comprehensive assessment, elicits patient preferences, and implements a treatment plan that is continuous, coordinated, and multidisciplinary. So if we know what to do, why don’t we do it?

The barriers to a global strategy for aging are many. They include a health care system that focuses on treatment of single diseases in isolation—even though most older people have “multimorbidity” and following guidelines for single diseases leads to over-treatment and excess costs. They include social factors, such as inadequate income protection and lack of caregivers. They include lack of knowledge—as the incidence of heart disease falls and treatment of cancer improves, a larger and larger percentage of older people will die of dementia, a disease with no known treatment. Currently, 44 million people have dementia world-wide, and that number is projected to rise to 136 million by 2050. But perhaps the greatest barrier is ageism, the belief that poor health is inevitable, that all interventions are ineffective, and that better outcomes, even if they can be achieved, are not inherently valuable. 

We need to tackle the global challenge of aging. The World Health Organization has taken an important first step: at the World Assembly last May, it agreed to prioritize work on aging, to develop a “World Report on Ageing and Health,” and then to generate a Global Strategy and Action Plan.

But it cannot just be the WHO who cares about aging. We all need to care.