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.
A fascinating article in this month’s health policy journal Health Affairs concludes that by focusing on diseases one at a time—trying to prevent heart disease or cancer or dementia—we are shooting ourselves in the foot. Instead, we should devote greater effort to delaying the aging process altogether. If we could slow aging, we could in principle delay the onset and progression of all fatal and disabling diseases at once. Instead of surviving your heart attack and then going on to suffer from dementia or cancer, you would remain healthy longer, perhaps dying suddenly, as centenarians have been reported to do. But will delaying aging improve the quality of life? And how likely are we to actually postpone aging any time soon?
Using a complicated model known as the Future Elderly Model (FEM), the authors predict what will happen to health care spending, functional status, and life expectancy under various scenarios. What they find is that decreasing the incidence of heart disease by 25% between 2010 and 2030 wouldn’t do very much for disability rates or overall mortality. Ditto for decreasing the incidence of cancer the same amount during the same period. In fact, mortality and disability would be much the same as what we can expect if the incidence of cancer and heart disease stayed the same and all that changed is that the number of older people increased, as we can expect when the baby boomers reach old age. Delaying aging, by contrast, would have a dramatic effect on both length and quality of life. These benefits would come at a considerable cost—by 2060, costs would be $295 billion greater in the delayed aging scenario than in the status quo scenario because all those people who live longer would typically qualify for Medicare and Social Security. The good financial news, however, is that changing the age of eligibility for Medicare from 65 to 68 and raising the age of eligibility for Social Security from 67 to 68 would offset the increased costs.
All very compelling. But just what are these potential advances that will allow us to delay aging? The Health Affairs authors cite two scientific papers, one in the Journal of Clinical Investigation and one in a journal called Experimental Gerontology, both published this year. The papers are very intriguing.
The two papers focus on the fact that aging cells secrete a variety of nasty substances that cause chronic inflammation, at least in mice. These chemicals are collectively referred to as SASP (senescence-associated secretory phenotype). SASP or the cells that make them are potential targets for drugs to delay the aging process. So far so good. But as one of the authors points out, it’s not known if SASP causes chronic age-related disease in people. Moreover, it’s entirely possible that disrupting the processes that cause aging and death will turn on the processes that promote cancer. Finally, as another of the authors argued, actually carrying out clinical research in humans, testing whether a drug (if we had one) has a beneficial effect, will take an estimated 17 years. This would bring us to 2030, the exact date in the Health Affairs article by which all the good effects of delaying aging are assumed to have already happened, according to their model. If we aren’t likely to have any aging-delaying drug available for clinical use before 2030, we can’t plausibly expect any beneficial effect until well after that time.
So by all means, let’s go ahead and invest in the basic science of aging. Let’s encourage more clinically trained geriatricians to go into this kind of research (reportedly of 7000 board certified geriatricians, only 12 have research grants from the biological division of the National Institute on Aging). But in the mean time, let’s figure out how best to care for the many frail elders who will be with us for years to come.
When I was a medical resident, I noticed that bad things kept happening to my older patients: many got confused and some fell and maybe even broke a hip. I wondered whether the problems they developed were related to the acute medical illness for which they were admitted or to the hospitalization itself.
So I did a study in which I compared the experience of older patients to that of people under 70. By looking through patients’ hospital charts and sitting in on the nurses’ rounds every day, the time when they reported to the next shift what was really going on with their patients, I was able to determine who was confused, who fell, who stopped eating, and who was incontinent. Then I analyzed whether there was any conceivable relationship between their medical problems and the symptom they developed. For example, a person admitted with a stroke or meningitis (an infection of the lining of the brain) could be expected to be confused but not a patient with a stomach ulcer.
What I found was that 40% of the older patients, compared to 9% of the younger ones, had one or more of these symptoms that couldn’t be explained by their admitting diagnosis. Moreover, as soon as patients had one of these problems, doctors intervened in some way—they ordered restraints for the patients who had fallen or a urinary catheter for those who were incontinent—and all those interventions in turn predisposed to new problems. In subsequent years, several other investigators documented the perils of hospitalization for older people and geriatricians introduced ACE (acute care for the elderly) units to minimize the risk of hospital-induced problems. These units have made a difference, but even in specialized units, older people are at risk of hospital-related complications.
Today, there is a renewed interest in learning about the perils of hospitalization. One prominent researcher introduced the concept of “post-hospitalization syndrome,” arguing that older patients are at heightened risk of problems after discharge, problems related not only to the acute illness for which they were hospitalized, but also to the debilitating effects of having been in the hospital. Patients are often sleep-deprived, poorly nourished, and de-conditioned after a hospital stay, and it is these factors that may predispose to difficulties in the 30 days after discharge. According to this analysis, physicians and nurses need to pay more attention to making the hospital a better and safer place for patients.
Now a new study picks up on the theme of the post-hospitalization syndrome, measuring the risk of adverse drug reactions during this period of heightened vulnerability. Pharmacists reviewed the records of 850 older people who collectively experienced 1000 hospitalizations and they identified 330 possible adverse drug events (injury from a drug and not the underlying disease) during the 45 days after discharge. Physicians looked through the list and agreed that 242 cases were truly adverse drug events, of which 2.5% were life threatening and another 21% were serious. They deemed just about one-third of these events preventable. Most of the drugs causing these problems were cardiovascular drugs or diuretics (fluid pills that are typically also used to treat heart disease); the next major class of offenders was narcotics. The authors conclude that doctors need to do a better job in the hospital (deciding on what medications a patient should be discharged) and afterwards (monitoring for side-effects).
It seems that patients still get into trouble after hospitalization, particularly frail elders, just as they did 30 years ago when I published my study of iatrogenesis. Adverse drug reactions are yet another form of trouble. But what are the implications of these observations? We should try harder to make the hospital a safer place for frail old patients. We should watch assiduously every time an older patient starts a new drug, and people who are discharged from the hospital often go home with several new medications or new doses of old medications.
Maybe we should also think about whether the patient should really have been admitted to the hospital in the first place. Perhaps his illness could have been prevented. More plausibly, perhaps we could treat the illness in a way that didn’t necessitate admission to a large, alien institution like a hospital. An older person cared for at home when he develops pneumonia or a worsening of his chronic heart failure won’t suffer from confusion induced by unfamiliar surroundings. He won’t have his sleep disrupted by monitors going off in the adjacent bed or nurses and doctors talking loudly in the hall. Of course he won’t have all the benefits of acute hospital care either, the sophisticated technology, the 24-hour nursing care. But maybe the risks aren’t always worth the benefits. Maybe we should design alternatives to hospital care that feature some of the benefits of the hospital but all the benefits of home.
A new survey asking people about their wishes for end-of-life care has been getting quite a bit of publicity lately. Commissioned by “The Conversation Project,” a laudable grassroots effort to encourage families to talk to each other about the kind of medical care they would want in their final days, the poll reports some interesting observations—and raises some important questions.
Like other earlier studies, this one finds that most adults (94%) think it is important to talk about end-of-life care. An extensive California study, for example, found that 83% of the adults surveyed thought it was important to make their end-of-life wishes known, A poll of adults in Massachusetts found that 84% of adults were comfortable talking about dying.
And like earlier studies, this one finds that though people think that talking about dying is important, many of them don’t actually talk about it (in the new study, only 27% did). In California, only 36% of adults actually had something in writing about their wishes; in Massachusetts, 51% had had a conversation with family members.
But if we look at people who are very sick or very old or both and ask whether they talked to their families about their wishes, the picture that emerges is a bit different. The Pew Research Center conducted a national poll in 2005 (with 1500 subjects) and another one in 2009 (with 2969 subjects) and found that while only 11% of people aged 18-29 had any kind of written documentation of their end of life wishes, 51% of those over 65 had such a document. Moreover, 63% of older Americans had talked to their adult children about their wishes for medical care in the event of incapacity—and among older women, 71% had had such conversations. So when the new study from the Conversation Project reports that only 27% of those polled had talked to family members about their personal wishes, is this too low?
While I agree that it’s a good idea for everyone to designate a health care proxy—to state who will make medical decisions on their behalf if they are unable to do so themselves—I don’t think it makes sense for everyone to have “the conversation” about end-of-life care. The overwhelming majority of Americans will die in old age: people over 64 account for 12% of the population but 70% of the deaths; I estimate that asking everyone who is between 18 and 64 to talk about their wishes for medical care at the end of life means that about 280 people will have such a conversation for every person who ends up actually dying in the next year. It’s far more reasonable to target advance care planning to those people who are likely to get very sick in the relatively near future, which means those who are elderly or who already have a life-limiting illness such as advanced heart failure or metastatic cancer. Moreover, if 20- or 30-year-olds actually did have “the conversation,” they would likely express preferences that will change by the time they are old and dying. How much suffering you are willing to endure in exchange for a small chance of living longer or how much debility you find tolerable may be very different, depending on whether you are already 80 and have outlived most of your birth cohort and on your underlying health status at the time you develop a terminal illness.
If pitching discussions about dying to everyone is excessive, talking only about dying isn’t enough. Once it becomes clear that a person is truly dying—and many people who are at that stage have difficulty accepting that the end is imminent, a situation made worse by doctors who have difficulty telling them where they stand—the vast majority of people don’t want more tests and treatments. The default approach to people who will surely die within a few months no matter what is done should be a focus on comfort. Conversations are needed principally to communicate that the end is near and to identify the small minority who do want trials of treatment that have only a very, very small chance of benefit.
What we need desperately to talk about is the final phase of life, whether that is measured in months or in years, a time demarcated by a marked decline in the ability to function independently. The 85-year old with heart failure, diabetes, arthritis, and kidney problems may not be dying in any conventional sense of the term, but she is likely to develop some kind of acute illness in the near future, whether pneumonia or dehydration or an exacerbation of her heart condition, and thinking in advance about the approach to medical care that is right for her is critically important. She has real choices to make: does she want maximal medical therapy? Comfort-oriented treatment? Or something in between? As Katy Butler makes so poignantly clear in her recent book, Knocking on Heaven’s Door, this final phase can last a long time—it was 7 years between the time when her father got his pacemaker and death—but decisions made along the way dramatically shape the experience of those years.
So I’m not at all surprised that 94% of the 1067 people surveyed for The Conversation Project said that it is important to talk to your loved ones about your end-of-life care wishes but only 27% have had a discussion about “what they do and don’t want in their final days.” I applaud the Conversation Project for encouraging people to open the door to discussing difficult topics. But let’s be selective about whom we invite in and what we talk about.
The widespread belief in American exceptionalism means that we tend to think we are unique. Often, being unique slips into being the best. But for a long time, I’ve had a sneaking suspicion that we might be able to learn something about how to improve life for older people by looking at other countries. A new study based on data from the UN, the World Health Organization, and the World Bank, suggests we could.
The report was released on October 1, the International Day of Older Persons, a day that will be celebrated at the UN this week but that I confess I wasn’t even aware existed. The authors created a “global age watch index,” made up of 4 domains: economics, employment and education, the environment, and health. Based on these measures, the best place to live if you’re over 65 is Sweden, which was in the top 10 in all 4 domains. The US placed 8th in the overall ranking (a geometric mean of the 4 domains). But if we look at the health status component, we find a bleaker picture.
Health status was measured based on life expectancy at age 60 (WHO data), healthy life expectancy at age 60 (data from the Global Burden of Disease Study, Institute of Health Metrics and Evaluation, Seattle), and psychological wellbeing (based on the Gallup WorldView, a subjective assessment of whether one’s life has an important purpose or meaning). Based on these indicators, the US ranking is an embarrassing 24.
Actually, the US didn’t do so well in the economic or environmental domains either—its overall score is respectable mainly because of relatively high employment and high educational attainment among American elders. In terms of income security, the ranking is #36, reflecting a marked income inequality. And on the “enabling environment” dimension, which measures things like social connections and access to public transportation, the US came in at 16.
So who are the role models? Three countries stand out as having high rankings across the board: Sweden, Norway, and Germany. The second tier is comprised of the Netherlands, Canada, Switzerland, and New Zealand. Maybe it’s time we explore what these other countries are doing right and have the humility to learn from their example.
While casting about for something to discuss in my blog, I stumbled on a short article that advocates renaming the “death panel” the “good planning panel.” The authors point out that family meetings involving physicians, patients, and their loved ones talking about future medical care are generally well-received. Moreover, this kind of advance care planning prevents depression and anxiety in both patients and their families, and when patients have these conversations, they typically end up undergoing fewer invasive procedures in their final weeks of life, procedures that most patients say they don’t want. Allowing Medicare reimbursement for such meetings would be a very positive step in the direction of improving the care for patients with advanced illness. Whether calling it a “good planning panel” would transform the way people think about these kinds of discussions, in light of the lingering association with the “death panels” born of the right wing media’s imagination, is another matter. Moreover, “panel” is a poor choice of word, evoking the image of a jury delivering a verdict. But it led me to think about the power of words and the role of euphemisms in medicine.
When the Center for the Advancement of Palliative Care commissioned a market survey a couple of years ago, they learned that most people either had no idea what the term “palliative care” meant or assumed, incorrectly, that it was the same as “hospice,” which they in turn associated with imminent death. (Palliative care is an approach to care for anyone with advanced illness: it neither assumes the patient is close to death nor does it in any way limit treatment, but rather provides treatment focused on improving quality of life; palliative care can be given alongside of life-prolonging medical therapy). When the public were asked if they were interested in having “an additional layer of support” from their health care team, as palliative care was defined, they were uniformly enthusiastic. Similarly, many physicians were reluctant to broach the topic of “palliative care” with their patients because they thought it would be too frightening; they preferred to offer “supportive care.” So is “supportive care” a more useful name because patients understand that term correctly, or is it a misleading euphemism, designed to make patients think it is something that it isn’t?
And what about the evolution of the “DNR” (do-not-resuscitate) order? Some years back, the phrase “DNAR” (do not attempt resuscitation) was introduced. Since I’m someone who likes to tell things as they are, I favored that substitution. After all, the implication of DNR seemed to be that if only the physician did perform CPR, the patient would be perfectly fine. Usually, the reality is quite different: no matter whether CPR is performed or not, the patient with advanced illness whose heart stops beating will almost certainly die. But more recently still, some physicians have replaced “DNAR” with “AND,” which stands for “Allow Natural Death.” Instead of focusing on whether a particular technological procedure (CPR) will or will not be tried, this formulation seeks to tell patients that what is at stake is having a “natural” experience. Natural, like organic, conjures up something good, unlike, presumably, something that is unnatural or inorganic. “Allow Natural Death” also adds the word “allow” to imply that if you don’t opt for this course, that is if you choose CPR, you will be obstructing or preventing something natural from occurring. Never mind that this is precisely the point—what is “natural” in this instance is to die, and CPR is intended to prevent that most unfortunate reality, just as taking insulin to treat diabetes or having bypass surgery to alleviate the symptoms of heart disease are very unnatural but often extremely desirable medical interventions.
So are these verbal permutations a good thing or they a kind of sleight-of-mouth, designed to deceive and manipulate? What if the original term—DNR or palliative care, for example—evokes such disgust that patients immediately reject it, whereas the new term—AND or supportive care—has far more positive resonance? I used to buy the bioethics argument that truth-telling is one of the cardinal virtues and that it’s a key ingredient of moral medical practice; that failing to tell the patient his diagnosis or his prognosis engenders fear and distrust, not to mention that it is profoundly disrespectful of a person’s autonomy, his individuality, his “right” to know about his own body and his own future. But I’ve been reading some behavioral psychology lately, and I’m not so sure that people make decisions based on calmly and systematically weighing the pros and cons of the various alternatives; they seem by contrast to rely heavily on their intuitions. What this perspective suggests is that there is no truly neutral way to present information, that words are powerful (though sometimes images are even more powerful), and that the best we can do is to avoid deliberately misleading patients.
So both “death panels” and “good planning panels” are out because they are not panels and they are not about death; “advance care planning discussions” are more accurate. “DNR” and “AND” are out because they mislead; DNAR is more objectively correct, though it may well have positive associations for some patients and negative associations for others. And I’ll stick with calling what I do providing “palliative care” rather than “supportive care,” though I’m quite willing to define palliative care—if I’m asked—as providing support to patients and families through symptom management, psychosocial support, and advance care planning.
Twenty-five years ago, discussions of medical futility were the rage in bioethics circles. The discussions petered out when it became clear that futility was in the eye of the beholder: physicians and patients often had very different ideas about what futility meant, depending on what they hoped medical treatment would accomplish.
In one case that generated considerable publicity, physicians sought to turn off the ventilator that was keeping 86-year-old Helga Wanglie alive. They argued that the ventilator was futile treatment since it would never allow Mrs. Wanglie, who was in a persistent vegetative state, to regain consciousness. Mrs. Wanglie’s husband, however, argued that keeping his wife alive—supplying the oxygen that her heart needed to keep on beating—was the goal of treatment. And by that standard, the ventilator was performing admirably. The court to which the physicians presented their case did not address whether the treatment was futile; it merely ruled that Mr. Wanglie was the rightful spokesperson for his wife and his wishes should be followed.
A second problem with futility is that it is a good deal easier to identify after the fact—the patient died, ergo the treatment didn’t work—rather than in advance. Because futility was proving elusive, medical ethicists stopped talking so much about it and focused instead on ascertaining the patient’s goals of care. The prevailing wisdom came to be that doctors should provide any treatment that was consistent with those goals. Ethics consultations were used to mediate disputes between families and physicians over whether particular treatments could achieve the desired goals. But physicians continued to be bothered by the nagging feeling that at least some of the treatments they provided were morally wrong: they caused needless suffering as well as outrageous costs without much, if any, benefit. A new study just out puts the futility debate back on the table.
The authors of the study used a focus group of 13 doctors who work in intensive care units, the site of 20% of all deaths in America, to agree on a definition of futility. They came up with four reasons for assessing a treatment as futile. The patient was imminently dying, the patient would not be able to survive outside an ICU, the burdens of treatment greatly exceeded the benefits, or the treatment could not possibly achieve the patient’s explicit goals. They then asked physicians at a large medical center in Los Angeles to evaluate each of their ICU patients every day and indicate whether the care they were providing was futile, using these four criteria. In one fell swoop, the authors got rid of the two problems with previous futility studies—sort of. They used a prospective design, asking for evaluations in real time, not after the fact. And they defined futile care, albeit by unilateral decree.
Over a 3-month period, the investigators collected data on 1125 patients cared for in one of 5 different ICUs by a total of 36 critical care doctors. They found that 123 patients (11%) were perceived by their physicians to be getting futile treatment at some point during their ICU stay. Another 98 patients (8.6%) got “probably futile treatment.”
What characterized the 123 patients whose doctors were convinced they were getting futile care? Their median age was 67 and 42% were on Medicare. They were more likely to be older and sicker than the rest of the group. The majority (68%) died before hospital discharge; another 16% died within 6 months; almost all the remainder were transferred to a long-term care facility, dependent on chronic life support. The total cost of futile hospital care for these 123 patients was $2.6 million.
In light of these results, it may be time for critical care specialists to convene a consensus conference to see if they can agree on the criteria for futility. Agreement by the majority of doctors who care for ICU patients would carry far more weight than the focus group comprised of 13 physicians whose opinions formed the basis of the current study. If a majority of the nation’s critical care experts came up with criteria for futility, whether the same ones used in this study or some modification, then Medicare would be in a good position to decide to pay only for clinical care that met the newly defined standard of care.
Medicare would not be dictating what is appropriate care; it would not be interfering in the practice of medicine. Medicare would merely be restricting payment to services of established benefit, just as it does when it pays for a cardiac pacemaker or an implantable defibrillator only if patients meet standard clinical criteria. Patients could still opt for treatment their doctors deemed futile if they were willing to pay for it. At an average cost of $4004/day for ICU care, I wonder how many people would pursue this route.
