November is “National Family Caregivers Month.” Upwards of 41 million Americans provide care to someone else (beyond normal childrearing responsibilities), and in the vast majority of cases that someone is an older adult, typically a parent or a spouse. Just exactly what do these caregivers do and how much time do they spend doing it? Two reports published in the last few months and supported in part by AARP shed light on both these questions.

The most recent report is “Valuing the Invaluable: Charting a Path Forward.” Released this month (November, 2019), it is an update of the 2015 report of the same name. Based on the latest available data, it assesses the economic value of caregiving at $470 billion, a calculation that estimates the average amount of time spent at 16 hours per week and values that time at $13.81/hour. Now this may be the average wage for a home health aide, so perhaps it’s the relevant way to compute the “value” to the economy. But it’s surely not typical of what the average adult could earn if she (it’s usually although not always a she) were not serving as a caregiver and were engaged in her usual occupation—perhaps being a lawyer or a teacher—instead. Taking the $470 billion figure as a floor, we see that even this low-ball figure is more than the total amount Americans spend out of pocket on health care ($366 billion in 2017) and it’s three times as much as Medicaid spent on what it calls long term services and supports, which includes nursing home care as well as home health aides, adult day care, and other programs.

As to what unpaid caregivers actually do, the job encompasses a variety of activities, ranging from dealing with insurance claims to providing transportation to medical appointments, to providing hands on medical and nursing tasks. The latter is what the second report, "Home Alone Revisited," addresses.

"Home Alone Revisited: Family Caregivers Providing Complex Care" was published in April, 2019 and, like Valuing the Invaluable, it’s an update of an earlier report, this one from 2012. The study finds that just under half of all family caregivers provide “complex care:” medical or nursing services ("M/N tasks") that until recently were primarily if not exclusively in the domain of health professionals. These tasks range from managing medications to using sophisticated technology such as a respirator or dialysis.

Not only are many caregivers delivering complicated medical treatment, treatment that often allows older people to stay out of nursing homes, but they are finding their responsibilities burdensome. They often report the activities are also rewarding, but they worry about making mistakes and suffer from minimal guidance from nurses and doctors.

The report observes that while we have made some progress in helping caregivers do their critically important work—for example, the CARE Act, which requires hospitals to ask older patients to name a caregiver and then include that caregiver in discharge planning, has been enacted in 41 states—much remains to be done. The authors conclude that health care systems and professionals must offer “instruction and support” to caregivers providing complex care.

All this is well and good, but I think we need to emphasize not just the concrete actions that caregivers take—preparing special diets, providing wound care, and operating durable medical equipment—but also the medical decisions they are expected to make. A key component of what caregivers do that is scarcely touched on in either report involves day to day management of chronic disease (the exception is the emphasis in the new report on managing pain, which is identified as a particularly challenging area for caregivers), deciding whether to adjust the medication dose or the flow of oxygen, determining whether to take the older person to the doctor’s office or the hospital emergency department. These crucial decisions that caregivers make all the time affect whether the patient gets care at home or in the hospital, gets invasive care or supportive care, takes expensive, newly developed medication or cheap, tried and true drugs. Such decisions have the potential to shape the older individual’s quality of life—and the national expenditure on health care. 

Caregivers should not engage in medical decision-making in isolation. They need the guidance of a health care professional. They need to spend time talking with the older adult and the physician about what overall goal of care makes sense at a particular point in time, given the patient’s general health and any limitations in daily functioning. If we want to support caregivers, and at the same time conceivably limit spiraling health care costs, we need to work with medical practices to teach them to partner with caregivers. Now that's a good activity for National Caregivers Month.

Caregivers are the Key

“Low levels of caregiver training are a missed opportunity for the health care system,” comments a research letter in JAMA Internal Medicine this week. Its authors continue: “Prior work suggests that training to better prepare family caregivers may improve health and reduce service utilization for those they assist.” In an age when health policy mavens are eager to find ways to decrease the enormous health care expenditures of “high-need” patients (also called “high-need, high-cost” patients), the potential contribution of caregivers has been sadly neglected.

The new study analyzes patient/caregiver pairs using data from the National Health and Aging Trends Study and the companion National Survey of Caregivers. Examining 1861 family caregivers of older individuals who live in the community and receive help in daily activities because of their health problems, the study confirms the paucity of relevant education in this group: only 7.3 percent of the unpaid caregivers reported receiving any training whatsoever. Put differently, 92.7 percent of family caregivers manage multiple medications, provide wound care, help with mobility and, in many cases, monitor specialized medical equipment entirely on their own. Is it so surprising that the older adults they care for have high rates of hospitalization? Their “carees,” the people they care for, typically suffer from multiple chronic diseases. If they knew how to manage acute exacerbations of those conditions—a flare of chronic obstructive pulmonary disease, for example, or a worsening of congestive heart failure; if they were equipped to deal with a predictable complication of those illnesses, such as a marked elevation of blood sugar in diabetes or the development of bronchitis in emphysema, then at least some of those hospitalizations might well be preventable. But the health care system does not routinely involve family caregivers in the ongoing treatment of frail, older adults. Only when their patients face a crisis such as the urgent need for dialysis or surgery or ICU care will physicians consult with caregivers. 

Shockingly, the new study found no association between the health status of the older adult and the degree of training of his or her caregiver. The degree of impairment, the extent of caregiver involvement, or the amount of caregiver burden, had no discernible effect on the level of support provided by the health care system. 

Also noteworthy are the age and sex of the caregivers: among the 1230 caregivers who themselves were older, two-thirds were women and their mean age was 81.8. I suspect the age distribution of caregivers shows two peaks: one composed of the adult children of the frail elders, the other made up of their spouses. 

We have to do better. We are investing energy in redesigning the health care system so as to provide better care for individuals with complex needs, focusing on the professionals who function within the system and the finances that underlie it.  Surely we could devote a little effort to the unpaid caregivers who are central to its effectiveness. A small step in this direction will be the publication of my book for caregivers, “The Caregiver’s Encyclopedia: A Compassionate Guide to Caring for Older Adults.” Look for it in late fall!

Who Cares?

As an ever-growing percentage of Americans live to extreme old age, with a correspondingly large proportion surviving long enough to become frail, family caregivers play an increasingly pivotal role in their care. Previous studies have documented how widespread caregiving is, how intense, and how medically oriented. But these studies typically are snapshots, looking at a single point in time. A new study, “Family Caregivers of Older Adults, 1999-2015,” uses several national surveys to examine changes in caregiving over time.

The take home message of this comparison is that the job of caregiving has become more challenging as the care recipients have become sicker and more disabled. In 1999, 18 percent of care recipients needed help in three or four areas. By 2015, this had risen to 26 percent. Caregiving has become more intense and of longer duration, with 45 percent of caregivers providing help for over four years in 1999, compared to 64 percent in 2015. 

What this means is that for caregivers to do a good job, they need to be more medically sophisticated today. In the groundbreaking 2012 study, “Home Alone: Family Caregivers Providing Complex Chronic Care,” 46 percent of family caregivers were found to provide one or more types of fairly sophisticated medical care. This percentage has undoubtedly grown over time, just as all the other indicators of complexity have grown. But there is no reason to believe that today’s caregivers are any better equipped than their predecessors to manage chronic disease.

The consequences of this shift are profoundly under-appreciated. Increased demands on caregivers result in emotional, cognitive, and financial stress. At least as important, and almost never addressed, are the consequences to the care recipients. Unless their family caregivers develop greater medical knowledge and unless they learn to navigate the maze that is our current health care system, they will pay the price in the form of more trips to the emergency room, more hospital admissions, more tests, and more procedures. 

If today’s frail older people wish to avoid burdensome and often unnecessary and even ineffective medical treatment, and if our society wants to avoid the financial cost of such treatment, then it behooves us to provide better support for caregivers. Caregivers are the key. In the next few months, I will take a small step in that direction with the publication of my book for caregivers, tentatively titled “Taking Care.” This book, to be published by Johns Hopkins University Press, will provide caregivers with the knowledge they need as their relatives make their way to the office, the hospital, the skilled nursing facility. It will teach them enough medicine to help them manage the acute symptoms and chronic diseases they are likely to encounter. Above all, it will help them think through decisions based on their family member’s underlying health state and preferences for care. Stay tuned!

Insuring You Have Insurance

It was really outrageous. It sheds light on our crazy health insurance system—and it is a warning to anyone considering going without health insurance or who thinks mandatory insurance is unnecessary. Here’s what happened:

A family member recently received an “explanation of benefits” from his insurer. He had had had a CT scan for which the hospital performing the test charged $1717. Leave aside for a moment that this is a preposterous fee. He was billed $237.21. Why the difference? The difference was due to the “discount” he received because his insurer had negotiated a rate with the hospital that was 14% of the rate the hospital wanted to charge. The insurer didn’t actually pay a cent—my relative has a “high deductible plan” and has to pay all medical fees until he his family has spent $5000 in a given year. But because he has insurance, he had to pay $237, not $1717. Put differently, if my relative didn’t have health insurance, he would have been charged the full $1717 for exactly the same test.

The system is a bit like scalpers charging extraordinarily high rates for tickets to popular shows or sports events. As long as the system of multiple private insurers is in place, where each insurer negotiates its own deals with “providers,” it’s terribly important to have insurance. If you don’t, you’ll be scalped.

With the Affordable Care Act once again under siege, it is critical to remind everyone why having health insurance matters. This is important for the over-65 population even though virtually everyone over 65 qualifies for health insurance in the form of Medicare. It’s important to older people because their caregivers tend to be under 65: if they get sick and don’t seek treatment because they lack insurance, they won’t be able to serve as caregivers. And it’s important because if those who are not quite old enough for Medicare don’t have private insurance, they may opt to defer taking care of medical problems until they reach 65. This then puts a significant strain on Medicare when they do enroll, potentially raising the cost of the program and putting it in jeopardy.

Mandating that everyone have health insurance makes sense because insurance is only viable if low-risk individuals subscribe along with those at high risk. If sick people are the only ones who buy health insurance, it will become inordinately expensive. Imagine, for example, that nobody bought car insurance until after they had a car accident—and then they expected the insurance to kick in immediately. Then the only people paying a premium would be those who filed claims. The insurance company would have to charge rates that were high enough to make good on all the claims—which means you would probably end up paying the same amount for your policy as you would have paid to fix your car—or to cover the costs of medical care for anyone injured—after an accident.  In the case of health and disease, insurers can get around this problem by deciding that if people wait until they get sick to buy insurance, they won’t be covered for precisely the condition that led to their deciding to insure!

Just keep in mind, that in addition to all these reasons for everyone having health insurance, there’s one more. As long as we have a system of private insurers that negotiate rates with health care “providers” (hospitals, physician groups, etc.), you will pay much less for medical care if you have insurance than if you don’t, even if your insurer pays nothing at all. If this seems absurd, it is, but that is how the system works.

Now, there are other ways to address this problem other than exhorting or requiring everyone to purchase health insurance. We could give everyone health insurance—as is done with Medicare Part A for people over 65—and use tax revenues to pay for the policy.  Medicare sets rates (as long as it has a monopoly, it doesn’t have to negotiate with each provider individually) and in many states, providers are required to “accept assignment.” That means your doctor cannot turn around and bill you the difference between what they charge and what Medicare pays them. But in the current world, you go without health insurance at your own peril.

MedPAC Speaks

I once called MedPAC the most influential organization in the medical arena that most Americans have never heard of. That was in a blog post from April, 2009 called “Follow the Money.” I continue to find MedPAC—the non-partisan, independent congressional agency that advises on issues related to the Medicare program—an excellent source of information and analysis. Its 17 members, representing academia, public health, medicine, and industry, make recommendations to Congress for revisions to the Medicare program twice a year. The March report is called “Medicare Payment Policy” and the June report is “Medicare and the Health Care Delivery System.” This month’s report contains more than the average share of interesting material. 

There’s a section specifically mandated by Congress that analyzes the Hospital Readmissions Reduction Program (it found, on average, that the program led to a 3.1 percent decrease in readmissions for five major medical problems, although it couldn’t be sure that the program caused the drop). Another section addresses how to improve Medicare’s approach to paying for medical devices (among other tactics, limit the ability of physician-owned distributors through greater regulation and accountability).  There’s a chapter on Accountable Care Organizations (possibly effective in controlling costs and improving quality, but with various modifications proposed). But what intrigued me most was the final chapter on “Medicare coverage policy and use of low-value care.”

MedPAC defines “low-value care” as services (including treatments, medications, and tests) that are of “little or no benefit” and where the risk of harms exceed the potential benefits. That, of course, is a value-laden definition since it assumes “benefit” can be clearly established and quantified, ditto for “harms,” and that we know the probability of either benefit or harm. Nonetheless, a remarkable number of treatments, medications, and tests are widely agreed to fall into this category. They comprise the list of no-no’s compiled by specialty professional societies for the Choosing Wisely campaign which, in its first five years of operation, came up with 525 recommendations. 

For frail elders, incidentally, the relevant professional organization inventoried by Choosing Wisely inveighed against gastrostomy tubes in people with dementia, obtaining urine cultures for people without urinary symptoms, use of lipid lowering agents in people with a limited life expectancy, screening for breast, colorectal, or prostate cancer in individuals with a life expectancy of less than ten years, hospitalization without taking into account goals of care, and aggressive blood pressure regimens.

The first observation MedPAC makes about low-value care is just how widespread it is among Medicare fee-for-service beneficiaries. Using two measures developed by Aaron Schwartz, Bruce Landon, and colleagues, the commission estimated that between 25 and 42 percent of patients over age 67 received at least one value service per year, costing Medicare between $1.9 and $8.5 billion. Imaging tests, cancer screens, and other diagnostic and preventive tests accounted for the lion’s share by volume, with cardiovascular tests and imaging the major offenders in terms of cost.

MedPAC concludes by considering six “tools” that could improve the situation. The commissioners raise the possibility of expanding the use of pre-authorization, a much-despised approach used by prescription drug plans and hospitals to limit the use of expensive medications. This tactic would create administrative obstacles to the use of various tests and procedures—and would further the bureaucratization of medicine deplored by many physicians. 

They also propose implementing “clinician decision support” programs and provider education, claiming that inappropriate antibiotic prescribing has been reduced in this way. No one could disapprove of trying to make clinicians wiser and more knowledgeable—the question is how to achieve this. Many of the usual “decision support” and “education” programs have been of dubious benefit. 

Another option is increased cost sharing. This is a favorite approach of commercial insurance programs but mercifully has rarely been used by Medicare—it places the burden for deciding whether a test is worthwhile squarely on the shoulders of patients, often without providing them with the information necessary to decide. It encourages wealthy people to squander their resources on low-value tests since the cost-sharing involved is trivial for them, and it may distort the decision-making of the less affluent by leading to their accepting cheap but useless tests and rejecting expensive but useful ones. 

Then there’s the strategy of revisiting Medicare’s “national coverage decisions” periodically—for the small number of tests in which the choice about coverage is made at the national level. The problems with this approach are that it fails to address the vast majority of coverage decisions that are made at the local level and that the reality is that revisiting coverage decisions has historically led to Medicare’s paying for more procedures, not fewer.

That leaves only two options to MedPAC. The first is introducing new payment models in which providers are held accountable for both cost and quality. This is the rationale behind Accountable Care Organizations and it may be working, according to MedPAC. It’s not entirely clear since the organizations that were able to lower the use of low-value care by and large choseto belong to an ACO so there may be something about the organization, not the ACO structure. The second option is to introduce cost effectiveness into determinations of Medicare payment.

MedPAC doesn’t explicitly endorse balancing cost and benefit in determining whether Medicare will pay for a service and if so, how much it will pay. It is at pains to review the long and sad history of attempts to introduce cost into Medicare’s decision-making. In fact, MedPAC includes a 14-page “primer” on Medicare’s decision-making process, with several highlighted sections on the failed efforts in 1989 and again in 2000 to use some form of cost-effectiveness. Both attempts were effectively derailed by the device industry that lobbied heavily against a strategy that they knew would result in restrictions on their ability to sell any device that is “safe and effective” (the FDA standard) at whatever price they wish.

But why, if including cost in coverage decisions is out of the question, does MedPAC go on and on explaining what cost effectiveness analysis is, reviewing the ethical objections to the use of QALYs (Quality-Adjusted Life Years), and detailing the history of efforts to define “reasonable and necessary,” the phrase used in the original 1965 Medicare legislation to describe what Medicare must cover? Why all the verbiage devoted to cost-effectiveness analysis in the commercial sector and by the non-profit Institute for Clinical and Economic Review? 

I have to assume that the reason is that the MedPAC commissioners recognize that while better physician education and new improved ACOs may be of some use, the most effective strategy is for Medicare to refuse to pay for “low-value care” when that is a euphemism for “useless intervention.” It is true, as the report indicates, that there is no explicit statutory provision including cost as a component of Medicare’s coverage decisions. But neither is there any statutory prohibition. It is time to try once again to exploit the loophole, perhaps using the language of “value” that is currently in vogue—after all, who could argue against choosing treatment that is valuable?

What We Pay

The Princeton health economist, Uwe Reinhardt, first said it in 2004. The private think tank, the McKinsey Global Institute, persuasively demonstrated it was true in 2008. But maybe now that the Wall Street Journal is saying the same thing, policy makers will listen. The elephant in the room, the main factor accounting for the high cost of health care in the US, is prices.

The spending gap between the US and other developed countries remains huge. We spend 17 percent of GDP on health care (that’s all spending, public and private combined); our closest competitor, Switzerland, manages to spend 11 percent. Other OECD countries, such as New Zealand and Norway, spend closer to 9 percent. And despite all the excess spending, we don’t have better outcomes across a broad range of measures, from infant mortality to life-expectancy.

The main culprit, the WSJ reports, is higher prices in the US. The average price of most prescription drugs is higher here—by a lot. Avastin (an expensive medication but not the most expensive medication there is) costs $4000 for a 400 mg vial in America and less than $2000 in western Europe. Ditto for procedures: the cost of coronary artery bypass surgery in the US is $80,000, compared to half that in other OECD countries. And so on, down the line.  Elsewhere in the world, the WSJ explains, state run health systems set limits on prices or refuse to pay a supplier if the cost is regarded as excessive. Our free market system, far from keeping costs down, drives them up.

The McKinsey Report, though a few years old now, makes further adjustments based on a country’s wealth. It argues that richer countries may want to spend a larger proportion of their income on health care. But even adjusting for greater GDP per capita, the US spent $650 billion more than “expected” in 2006. The fastest growing part of the excess, the study showed, was due to outpatient care, both office visits and ambulatory surgery. And what was driving up costs in these domains wasn’t the frequency of visits—Europeans tend to go to the doctor at least as often as their American counterparts—it was the cost per visit. Other major contributors to the high cost of American health care are drug pricing (McKinsey found, as did the WSJ, that we pay more in the US for a given drug than we would in other OECD countries) and the cost of health administration (all the spending on marketing and administration of multiple private health plans boosts costs way over what they would be with a single payer).

I think it’s fair to conclude that the high cost of American medicine isn’t solely—or even mainly—due to waste. Targeting the use of less-than-optimal therapies in outpatient practice, as the Choosing Wisely campaign does won’t solve the cost problem. Nor will targeting expensive, burdensome, and unwanted treatment near the end of life. These are important efforts to improve quality of care. But if we want to do something about cost, we need to have an impact on prices. That means cutting payments made by insurers (both Medicare and private insurance companies) to pricey specialists. It means allowing the biggest and most influential insurer of all, Medicare, to negotiate with drug companies about price. It means allowing insurers such as Medicare to pay for devices based on their cost-effectiveness, not based on what the manufacturer charges. 

Introducing single payer health insurance would help, too. It happens to be the only other way to cover all Americans and make health insurance affordable and get rid of pre-existing conditions riders without use of the “mandate” that Republicans find so very unpalatable. But that’s a topic for another day.

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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