The remembrances of JFK this week focused, understandably, on his great promise and how an assassin’s bullet burst the bubble of optimism and exhilaration generated by his election. Implicit in this perspective, however, is the suggestion that all that came after Kennedy was pessimism and gloom, epitomized by the Vietnam War. What is ignored by claims that it-was-all-downhill-after-JFK is that for all Kennedy’s youth, his oratory skills, and his brilliance, he was in many ways not a terribly effective president. Left largely unsaid is that it was under LBJ, the consummate politician, that progress was made on the liberal agenda. It was LBJ who pushed the Civil Rights Act, Head Start, the Food Stamp program—and Medicare and Medicaid--through Congress.
For 50 years, America had resisted national health insurance. Theodore Roosevelt (yes, the Republican Roosevelt) supported national health insurance in the election campaign of 1912, arguing that no society could be strong whose people were sick and poor. But he lost the election and the issue largely faded from the national agenda until a different Roosevelt became president in 1932. While enthusiasm for national health insurance grew within FDR’s administration, the president himself never championed it as he faced relentless opposition from the AMA and state medical societies.
Truman picked up the baton after WWII, but again confronted insurmountable opposition from the AMA as well as other powerful health care organizations such as the American Hospital Association. Thus, despite continued public support—polls every couple of years between 1936 and 1945 showed a large majority of Americans supported government health insurance—Congress balked. The passage of legislation providing comprehensive national health insurance for the poor (Medicaid) and the elderly (Medicare) during the Johnson Administration in 1965 was an extraordinary achievement, launching a very popular program from which older people continue to benefit today.
Just how important Medicare is to the health and well-being of the 47 million people (8 million disabled Americans and 41 million older individuals) now covered by the program was brought home recently by the publication of an article reminding us that access, affordability, and insurance complexity are generally worse in the US than in 10 other developed countries.
American's poor access and affordability arise largely because of the enormous uninsured population in the US—a situation that does not affect older people, thanks to Medicare, and that will be less of a problem if the Affordable Care Act is allowed to go into effect. Even among insured adults in the US, however, high out-of-pocket spending was a problem, chiefly because of the high deductibles and cost-sharing in many US insurance plans. This problem is less likely to affect older people in light of Medicare’s comparatively modest cost-sharing.
Access to primary care was less good in the US than in many other developed nations, a problem that was particularly severe for the uninsured. This is one domain that also affected the insured, including those with Medicare, because of a relatively poorly developed primary care infrastructure in the US.
In the area of administrative costs and complexity, the US was an outlier, with US health insurers spending $606 per person on administrative costs, more than twice as much as the number 2 spender, Switzerland, and 17 times as much as the number 11 spender, Norway. While there is considerable debate about just how to compute administrative costs of a health insurer, some of the best estimates indicate that Medicare spends less than 2% of its operating expenditures on administrative costs, compared to 11% for Medicare Advantage Plans (the private Medicare spinoffs) and 12% or higher for other private insurers.
Let us celebrate what Medicare has achieved—reasonably good access to comprehensive care at an affordable price for consumers—and make sure that we do not sacrifice these accomplishments as we improve Medicare to make it more responsive to contemporary medical problems and to slow the rate of rise of health care costs. And as we pay tribute to Medicare, with all its imperfections, let us also recognize that the Affordable Care Act, with all its imperfections, aims to do for the rest of the population what Medicare has done for the elderly and the disabled. Obamacare is not national health insurance--it is as its core a plan designed by Republicans, supported by big business, and relying on private rather than government insurers--but its intent is to extend the indubitable benefits of health insurance to another 30 million Americans.
The 1.4 million people who live in nursing homes are among the most vulnerable, powerless individuals in American society. They are old (mean age 79.2), they are physically frail (60% are unable to do 4 or more of the most basic daily activities), and most of them are cognitively impaired, many of them severely (39%). Nursing homes have come a long way since the bad old days when residents were tied up, neglected, and abused, and one of the stratagems for improving care has been the “care planning meeting.” A plan of care must be developed by the facility staff for all new admissions to nursing homes that are Medicare or Medicaid certified, addressing physical, emotional, and medical needs. These plans are reviewed on a quarterly basis—more often if there is a major change in status, such as a hospitalization. And one of the innovations of the last decade is to invite family members to participate in care planning meetings. This gives families information about their loved one and an opportunity to make suggestions and raise concerns. But one issue that neither staff nor families routinely raise and that the many websites that advise families about how to negotiate the unfamiliar nursing home terrain is medications. And that, specially in light of recent revelations, is an essential question.
The recent revelation is that Johnson & Johnson, the world’s largest drug company, just settled a variety of civil and criminal complaints about its sales of the psychiatric drug Risperidone (Risperdal) for $2.2 billion (yes, that’s billion) J&J “accepted accountability” for misbranding Risperdal as useful for treating elderly patients with dementia, for marketing Risperdal for the elderly, and for paying kickbacks to both physicians and to Omnicare, the largest pharmacy supplying nursing homes, for using the drug.
It’s been known for quite some time that drugs like risperidone, an “atypical” neuroleptic used in the treatment of schizophrenia, come with considerable side effects. Though less likely to cause Parkinsonian symptoms than earlier “typical” neuroleptics such as chlorpromazine (Thorazine) or haloperidol (Haldol), it can cause sedation, low blood pressure, and dry mouth, among other symptoms. Then it was shown to increase the risk of diabetes and weight gain. And a meta-analysis in 2005 found it increased the risk of sudden death by death by 60-79%, which led to the FDA issuing a “black box” warning—a warning on the risperidone label highlighting its hazards. Families and physicians might have been willing to accept the risk of side effects and even of death when the drug was used in people who were already very old and very sick if it had been effective. Unfortunately, a series of studies looking at whether risperidone and other “atypical neuroleptics” (similar drugs in the same class) were effective in controlling the behavioral symptoms of dementia—problems such as agitation or paranoia—found only limited evidence that it achieves these goals.
Since behavioral symptoms are often very difficult to control and create problems both for the patient and for nursing homes, physicians have continued to use neuroleptics including risperidone “off label,” that is for uses other than those for which the FDA approved them. This is an entirely legitimate practice. What is not legal is for drug companies to advertise their drugs for use in these conditions or to bribe physicians or pharmacies to use the drugs.
The Justice Department is hoping that the new settlement (in which, by the way, J&J does not admit any wrongdoing) will stop the prevailing practice and serve as a deterrent to this kind of behavior in the future. Given that GlaxoSmithKline settled with the government last year for $3 billion over similar behavior with respect to two antidepressants (Paxil and Wellbutrin), along with a diabetes drug, and that Pfizer made a payment of $2.3 billion in 2009 over inappropriate marketing of several other drugs, it’s not so clear that ithe deal will deter outrageous behavior. It is entirely possible that settlements of this kind are seen by Pharma as the cost of doing business. Everybody misbehaves all the time; occasionally a company is caught; on balance, a periodic payoff may be worth the tremendous benefits. After all, at its peak in 2007, J&J sold $4.5 billion worth of Risperdal. The company has now signed a 5-year “corporate integrity agreement” in addition to paying the fine, but analogous agreements signed by medical device manufacturers in the past led to no substantive changes in behavior.
So in those care planning meetings in the nursing home, if they ask nothing else, family members should ask “what drugs is mom on?” And that should be followed by “why is she on them?” and “are they helping?” And if there is no good reason for giving the medication, ask that it be stopped, especially neuroleptics. It will save mom a lot of misery—and save money for all of us.
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Teeth matter. Not just to chew food, although that is critically important to older people, who are at greater risk of undernourishment than of obesity. Not just for esthetic reasons, although appearance is an important part of self-esteem and teeth are an important part of appearance. Oral health is a significant ingredient in the overall health of older people. For years, geriatricians have recognized poor dentition as a risk factor for pneumonia--the bacteria that build up in dental plaque can get into the lungs and cause infection. The Journal of the American Geriatrics Society, the leading professional journal dealing with medical issues in older individuals, has a special section each month called “Dental and Oral Health,” much as it has a section on”Ethics, Public Policy, and Economics” and one on “Educating and Training.” In October, the article in the “Dental and Oral Health Section” was on oral health in old people with diabetes (it’s poor). So if teeth are so important, why isn’t dental care covered by Medicare?
It turns out that lots of arguably important services are not covered by Medicare. In large part, what is covered and what isn’t is still governed by the original 1965 legislation enacting Medicare (Title XVIII of the Social Security Act). Medicare excluded then, and still excludes today, eye exams, refractions, and eyeglasses, as well as auditory exams and hearing aids. It excludes “services that are not medically reasonable and necessary,” although nobody knows what exactly is reasonable and necessary and Congress has assiduously avoided defining the term, resulting in the exclusion of cost from consideration in determining Medicare coverage. Some of the services excluded from the original legislation have since been added in: for example, prescription drug coverage is available thanks to the Medicare Modernization Act of 2003, and certain preventive care such as colorectal cancer screening, Pap smears, and prostate cancer screening have been added. But dental care remains an exclusion: “Items and services that are furnished in connection with the care, treatment, filling, removal or replacement of teeth” are off the table.
Older individuals can have private dental insurance, just as younger people can. But this raises another problem. Dental insurance itself isn’t really insurance at all. It covers routine preventive and maintenance care but specifically excludes the costliest treatment. Typical policies have a $2000 per person annual maximum. All it takes is one or two root canal treatments and the bills start to mount up. So dental insurance has it backwards—it covers the small stuff and leaves you vulnerable to the big bills. The essence of insurance is supposed to be that it protects against extreme loss: as Wikipedia puts it, an individual assumes a guaranteed and known relatively small loss (the premium paid to the insurance company) in exchange for a promise to compensate the insured in case of a far greater loss.
Medicare includes neither reasonable dental insurance (payment for costly care such as dentures or root canals or extractions) nor conventional dental insurance (payment for routine preventive care and filling simple cavities but minimal coverage for anything else). The reason that Medicare doesn’t cover teeth or a whole host of other services that older people need is that Medicare was designed as insurance for hospital care. While it has gradually expanded—originally, it wasn’t even going to pay doctors—it is only slowly adapting to contemporary reality. What Medicare is still best at is providing comprehensive coverage for acute illness: all the high tech diagnostic procedures and treatments, from PET scans and cardiac catheterizations to surgery and intravenous chemotherapy. What Medicare is not so good at is addressing chronic disease. And most older people suffer from chronic disease. Over two-thirds of people on Medicare have more than one chronic condition; 21% have four to five chronic conditions and 14% have six or more.
Good geriatric care has to be coordinated, integrated, and patient-centered, but Medicare does little to foster any of these features. Medicare still does not pay for case managers to facilitate integration; it is largely fee-for-service, undermining any realistic possibility of integrating physicians, hospitals, and nursing homes; and it does nothing to encourage patients to discuss their goals of care with their physicians. A few experimental programs are underway to remedy these deficits, such as Accountable Care Organizations (to promote integration) and disease management programs (to promote coordination and self-care). But we’re a long way from having a truly modern Medicare program that serves the needs of frail elders and near-frail elders along with those of their more robust counterparts.
So the critics are right that we need to do something about Medicare. But what we need to do is not to privatize the program or cut benefits. If we want to put teeth into Medicare, we should add true dental coverage— and overhaul the program so that it focuses more on chronic care rather than acute care, more on home care than on hospital care, and more on human care than on technological care.
Since the 1990s, physicians and patients have been fighting over futility. The doctors look at a patient who is dying and say that further tests and treatment cannot possibly work and shouldn’t be done. The patients, or more commonly their families, look at those same patients and say that they want “everything done” to try to prolong life.
As often happens in the US, the futility battle ended up in the court room. In the case of Helga Wanglie, an 86-year-old woman in a vegetative state after hip surgery, the doctors went to court over whether the patient's husband had the right to insist that she remain on a ventilator. The court, as also often happens, didn’t address the issue of whether the ventilator was or was not appropriate treatment for Mrs. Wanglie; it simply ruled that her husband, as her surrogate, had the right to make the decision. After that case, many physicians concluded that the fight over futility was itself futile. For the last 15 years, physicians have tried to focus on determining a patient’s goals of care and then suggesting what treatments are most consistent with those goals. When they still cannot agree with family members about the right course of action, they resort to mediation, sometimes provided by a hospital ethics committee. But simmering below the surface, conflicts over perceived futility rage bubble vigorously.
A short article in the New England Journal of Medicine, “The Debt of Life—Thai Lessons on a Process-Oriented Ethical Logic,” offers a refreshing way of looking at futility. Based on his experiences doing ethnographic field work in Thailand while a graduate student in Anthropology, physician Scott Stonington shines a new light on the typical ICU dilemma. The physicians, he reports, are loathe to perform various possible tests and treatments because they think in terms of outcomes. They argue that their interventions won’t work in the sense that they won’t overcome the existing medical problems and that they are burdensome to the patient and, parenthetically, expensive. The patient’s family, he observes, think in terms of the process of care. He comments on one Thai family who said that their father had given them “flesh, blood, and breath” so they had a “debt of life” to pay. The ICU, they reasoned, allowed them to repay their debt: it gave their father flesh (tube feedings for nutrition), blood (intravenous medications and dialysis to cleanse the blood), and breath (a ventilator for breathing). The family was not so much interested in the outcome of treatment as in the treatment itself. In this scenario, the conflict was ultimately resolved when the family came to the conclusion that they had paid their debt and further aggressive care could be discontinued.
I made a very similar argument in my essay, “The Standard of Caring: Why Do We Still Use Feeding Tubes in Patients with Advanced Dementia?” I noted that it had been over 10 years since a series of studies in the medical literature reported that feeding tubes (a tube inserted into the stomach to provide nutrition) did not prolong life in patients with advanced dementia who had eating difficulties. These patients are nearing the end of their lives and no matter what procedures they have, their prognosis remains pretty much the same. Not only don’t the tubes prolong life, but they don’t accomplish a variety of other goals that doctors had hoped they might: preventing pressure ulcers (skin breakdown that is often related to malnutrition) or preventing pneumonia (caused by food going into the lungs instead of the stomach). As a result of these studies, the rate of tube feeding people with advanced dementia has declined, but it is still far from zero. I suggest that the reason some families want a feeding tube is to show that they care. It’s not that they expect to improve some quantifiable outcome—living longer or avoiding pneumonia. It’s that they want to have a way to demonstrate caring. For the same reason, we keep people with advanced dementia clean and dressed. We don’t require a study that shows that they will be less likely to develop an infection if they are kept clean. We don’t demand proof that they will live longer if they are clothed. We assume that being clean and clothed contribute to well-being because they are among the only ways we as caregivers have of showing respect for the human being who happens to have dementia. Tube feeding, from this perspective, is a means of proving that we care.
There’s an important conclusion to draw from the tube feeding example, a conclusion that applies to the ICU situation as well. If we want to dissuade families from advocating feeding tubes for their relatives with advanced dementia, we need to offer a viable alternative way to demonstrate caring. I suggested using special popsicles made by freezing high protein liquid supplements for patients who have trouble chewing and swallowing but can still suck. Hand feeding, laboriously spoon feeding someone who has trouble feeding himself, is an alternative for people who can still process food in this way. But simply telling families that we won’t feed their relative at all and trying to assure them that the person with advanced dementia will not experience hunger or thirst fails to offer any means of caring. In the ICU setting, perhaps what we need to do is not continue burdensome treatment until families feel their “debt is paid.” Perhaps instead what we need to do is to find genuine alternatives to painful or uncomfortable or undignified treatment. But unless we offer something rather than what families perceive as nothing, we will be stuck with providing what physicians regard as futile treatment. Hospice care is intended to serve this role, but may not offer enough active interventions to satisfy family members. Our challenge is to identify ways to truly show we care.
