Lock 'em up!

            A provocative, contrarian position paper (somewhat ostentatiously and bizarrely entitled by its authors a “declaration”) is creating a stir by advocating “focused protection” as a means of dealing with the Covid-19 pandemic. The strategy of “focused protection” as defined by the 3 principal architects of the “declaration” recommends 3 different approaches for 3 different segments of the population: for those at highest risk of death from Covid-19, individuals over 85, they recommend a lockdown; for those at moderately elevated risk, including those who are “retired” (aka people over age 65), they advocate a “safer at home” policy—delivery of groceries and other essentials, and staying home  except for socially distanced outdoor visits with friends or family; for those under 65, they suggest a resumption of normal activities. This algorithm, they argue, would allow the development of herd immunity in the general population by assuring that roughly 70 percent of them be allowed to contract the virus, leading to the end of the pandemic.

            Scathing critiques of this proposal are appearing daily. They discuss issues such as the failure to take into account the burdens of Covid-19 short of death (for example, the long-term sequelae that have increasingly  been reported) and the ethical and practical problems of effectively locking up all older people who live in congregate housing of any kind, not to mention the ethical and practical problems of vastly restricting the activities of everyone over age 65 who doesn’t live in congregate housing. These are legitimate concerns. I’m going to add to the growing list of critics by focusing on two others: the ageism of the proposal and, what is more surprising, the failure to recognize that a rare event that afflicts a large number of people produces a commensurately large number of casualties.

            First, ageism.  The authors of the proposal never explicitly acknowledge that the total population over age 65 in the US is now over 53 million people. This number doesn’t include the millions of people who are in the high-risk category, who would also be locked down, who are under age 65 but have important underlying health conditions. The authors seem to imagine that the most vulnerable individuals, those over age 85, account for most of the excess deaths and that all of them live in nursing homes. In fact, only 4 percent of the elderly population live in nursing homes, or about 1.3 million people. The authors also seem to assume that limiting contact by older individuals with the rest of the world will prevent them from becoming infected; they have apparently forgotten that the effectiveness of sequestration depends on the prevalence of the disease in the surrounding community: if all the nursing assistants and grocery delivery people are allowed to get sick, then their chance of transmitting the virus, even with relatively limited contact, will go up.

             Perhaps the lead authors of the paper, all of whom are under age 60, assume that everyone age 65 or older is superannuated. They should be reminded that fully half of the members of the US Senate are over age 65, as of course is the current president and his challenger. Not only do many older people work (16.4 percent, or 8.69 million), but the 65+ set account for a disproportionate share of consumer spending. How will the rest of society be able to “go about their business” without older people to come to their restaurants, stores, and performance venues? And parenthetically, if the 8.69 million people over age 65 who are still working are exhorted to behave just like their younger counterparts, i.e. to “go about their business,” and even assuming that most of these individuals are 65-74 (though this is not strictly true—14 percent of senators, for example, are over age 75), then the projection is that about 152,000 of this group would also die of Covid-19).

            Second, a small number multiplied by a very large number can be a large number. Let’s look at the segment of the population among whom the “declaration” suggests the virus should run rampant. Americans aged 55-64, like their younger counterparts, are advised to go about  unfettered by regulations. As of 2019, this group included 42.44 million people. If herd immunity is to be achieved, an estimated 70 percent of them would have to contract Covid-19, or 32.68 million people. Now here’s the tricky part. We need to know what fraction of people in a given age group are likely to die from Covid-19. The number that is commonly cited is the case fatality rate, or the fraction of people with documented infections who die. But what we really want to know is the infection fatality rate (IFR), or the fraction of people who have contracted Covid-19, whether they know it or not, whether they are symptomatic or not, who actually die from the disease. Computing that rate depends on accurately determining the prevalence of Covid infection in a particular population and the death rate in that group. The best measure I have seen for the IFR for people age 65-74 is 2.5; the IFR for the 75-84-year-old group is 8.5; and the IFR for the 85+-year-olds is 28.3.

            But what about those who are 55-64? Their IFR is .75, so the authors of the “declaration” deem them safe. But if 32.68 million people in this age group contract Covid-19, and .75 percent of them die, then that means, by simple multiplication, that there will be 222,810 deaths in this group alone. A small number (.0075) times a large number (32.68 million) is a pretty big number when we’re talking about human lives. 

             For that matter, why stop with the 55-64-year-olds? Why not consider the 45-54-year-olds? They make up 40.88 million people. If 70 percent contract the virus (after which there should be herd immunity and the virus will vanish), that’s 28.16 million people. The IFR for this group is .068, which translates to 29,708 deaths. Is that acceptable?

            To determine what number of deaths is too many, some commentators have compared the numbers to flu deaths; others have compared them to automobile deaths. The fallacy is to assume that either you open society completely (to selected age cohorts) or you have a complete shut-down. That’s no more accurate than assuming that either people are allowed to drive cars and die in automobile accidents or they aren’t allowed to drive and no one dies. The reality for driving is that there are some mitigating steps we can take, such as seatbelt laws and speed limits on roads, which will significantly decrease the risk of death. In the case of Covid-19, mitigation means exactly what the majority of public health experts currently advocate: masks, social distancing, limiting the size of indoor gatherings, and substituting work at home for work in the office whenever possible. 

            When scientists band together to make an argument that is intended to influence public policy, they write a “position paper” or a “white paper” or an “open letter.” The “Great Barrington Declaration” reveals in its very name that it is something different. It is an ethical perspective masquerading as a technical brief. The authors claim their case for what to do in the setting of the pandemic arises logically from the data. In fact, their strategy, like all strategies for dealing with the outbreak, requires balancing personal freedom and the social good. The “declaration” implicitly assumes that the quality of life of older people is of no consequence and that a society has no special responsibility to its most vulnerable members. It dismisses the anticipated huge amount of death and disability among people under 65 by sleight of hand. Even if this policy could effectively be implemented—if allowing the virus to multiply unchecked would not overwhelm the health care system, causing people suffering from non-Covid conditions to suffer, if older people sheltering in place would remain uncontaminated as the disease becomes rampant in the workers who bring them their food and other services—this is not a policy that most Americans can endorse. The moral fiber of the American people may have been frayed in recent years, but it has not broken entirely.

Caveat Emptor!

Quite by accident, I stumbled upon Kurt Eichenwald’s memoir in the new book section of my local library. I remembered the author from his work as an investigative reporter who uncovered massive white collar crime. His book, The Informant, about just such a scandal, became a best seller and a movie starring Matt Damon. When I realized the new work had a medical theme, I was intrigued; when I discovered that much of the story unfolded at Swarthmore College, where Eichenwald had been a student, and where I had been a student some years earlier, I decided I had to read it.

At first glance, you might think that A Mind Unraveled has no relevance for geriatrics. The diagnosis and misdiagnosis of Eichenwald’s temporal lobe epilepsy as well as the shockingly misguided treatment by ostensibly reputable physicians all took place in the early 1980s, when the author was a teenager or in his early twenties. Unfortunately, the book’s messages are all too relevant for older patients today. Distilled to their essence, those messages are first, that not all doctors are created equal and second, that communication is key. The long, complicated, and riveting story of lying, arrogance, and sheer incompetence that led to those conclusions is worth reading. I read the entire 380-page book in a single weekend, devouring it much as I would a spy thriller.

The not-all-doctors-are-created-equal conclusion is particularly relevant to older individuals because even physicians who are competent within their sphere of expertise often have little knowledge or understanding of geriatric issues. In my last post, commenting on recent data indicating that despite all we have learned about preventing falls, older people are falling—and injuring themselves—at higher rates than ever before,  I suggested that a critical weakness of prevailing fall-prevention systems is that they hinge on the knowledge and interest of physicians, both of which are often absent. Identifying a physician who is a good diagnostician, a kind person, and who actually knows about falls, confusion, polypharmacy, cognitive impairment, incontinence, and other common geriatric syndromes is imperative, particularly for frail older people. Finding such a person can be challenging, and being confident s/he has the requisite expertise is also challenging. Board certification in geriatrics is one indicator; working with a multidisciplinary team including a nurse practitioner is another; word of mouth is a third. Trial and error may prove the only way to be certain you have found the right person: come to your first appointment with a checklist of topics the physician should be sure to address such as functional status and advance care planning. If the physician doesn’t address those issues during an annual physical exam, absent a compelling need to focus on an acute medical problem, it’s probably time to find someone else.

The communication-is-key conclusion is relevant to all physician/patient interactions, but is especially important for older people, many of whom have hearing problems or cognitive impairment. It took multiple tries before Eichenwald found a neurologist who understood that given that all the medications used in the treatment of epilepsy have potential side effects, choice of which drug to use involves balancing risks and benefits. The patient’s preferences, which side effects s/he finds tolerable in exchange for how much benefit, are essential in making a choice of drugs. For geriatric patients, the role of preferences is often paramount in medical decision-making. The assumption that the goal of treatment is cure may simply not apply to an 88-year-old with multiple medical problems; maintaining or bolstering his ability to remain independent may, for example, outweigh the benefits of disease eradication. Or cure may be irrelevant, as with some cases of prostate cancer, if the odds are that the patient will die of some unrelated problem long before his prostate cancer metastasizes, but the risk of surgical treatment causing incontinence or impotence now is great. 

Regrettably, the dismissive attitude of Eichenwald’s physicians to him as a person are all too familiar to many older individuals. Just as many of the neurologists in A Mind Unraveled failed to take their patient seriously as a person with anxieties, concerns, and understanding, so too do physicians often neglect to treat their older patients with respect and sensitivity. To find a physician who listens you cannot rely on board certification. Word of mouth can help (if the mouths belong to people you trust, preferably people whose personalities and medical problems are similar). But once again, trial and error may be the best path. Don’t hesitate to use yourself as a barometer. Only you can gauge whether you “clicked” with the physician. Just as you should be reluctant to listen to the shoe salesman who assures you that those very uncomfortable shoes will improve with time, you should ignore at your peril the internal voice that tells you to stay away from a particular physician.

I would like to believe that Eichenwald’s experience was highly unusual. Most physicians who treat epilepsy know that a negative EEG doesn’t mean there’s no seizure disorder (but the presence of characteristic electrical changes indicates there is). Most physicians would monitor blood counts when prescribing a medication that has a “black box warning” from the FDA stating that the drug can cause life-threatening bone marrow depression and that regular blood tests are required. No competent clinician would offer a diagnosis of a brain tumor based solely on a few of the patient's behavioral quirks. And I haven’t even touched on the arrogance and prejudice that animated members of the Swarthmore administration, leading to their expelling young Eichenwald—and then readmitting him when faced with the prospect of what for them was an unwinnable suit charging civil rights violations (in particular, violation of Section504 of the Rehabilitation Act of 1973 requiring educational institutions to meet the needs of students with disabilities). 

We can only hope that the behavior described in this memoir is extraordinarily rare in colleges and universities today. But we do know that just as systematic racism persists today, so too does systematic ageism. Caveat emptor! 

I confess that I tremendously enjoyed The One-Hundred-Year-Old Man Who Climbed Out the Window and Disappeared (2009). It wasn’t profound and it wasn’t great literature, but it was laugh-aloud funny and a delightful depiction of someone who is unambiguously old. The recently released sequel, The Accidental Further Adventure of the Hundred-Year-Old-Man,is not quite the masterpiece of comic satire as its predecessor, but it’s a welcome distraction in this time of unrelievedly bad news. But I think the reason I particularly like Jonas Jonasson’s creation is that I appreciate the way he depicts an older person.

The typical reaction to a one-hundred-year-old who remains engaged with life is of the gee-whiz-golly variety: isn’t he amazing! Or, if it’s a woman, isn’t she cute! The old person (and yes, I prefer the locution “old” rather than one of the more politically correct euphemisms) is treated as a curiosity, a zoo specimen, not as a full human being with all his or her foibles and failings. My bias is that we should accept people for who they are—whether they are 50, 75, or 100.

Then there is a whole area of research devoted to studying centenarians (for example, the New England Centenarian Study).The prevailing wisdom is that centenarians are a special breed who have managed to make it to a ripe old age through a combination of genetics, lifestyle and, I would add, luck. Part of what makes them special, in this view, is that they have been spared many of the chronic diseases of old age, suffering perhaps from osteoarthritis, farsightedness (in the medical sense), and cataracts, but with a remarkably low prevalence of heart disease, cancer, and dementia. Researchers interested in centenarians seek to understand just how this phenomenon is achieved and potentially to enable more people to achieve robust longevity. The concept of delaying aging and thereby achieving the long-desired goal of compressing morbidity is decidedly attractive—although I have long suspected that the reason centenarians do not seem to experience a prolonged, albeit late-onset period of gradual organ failure is not that they stay healthy until some breaking point and then fall apart all at once. Rather, I imagine, what happens is that the 80-year-old who gets cancer or heart disease is treated aggressively, allowing that individual to survive long enough to develop other medical problems, which are also vigorously treated, and so forth. The 100-year-old who gets cancer or heart disease, by contrast, is treated palliatively and dies without the opportunity to come down with a second or third or fourth disease. But that’s mere speculation. 

My larger point about centenarians is that studying them as a group for their exceptionalism is all well and good, but we should not forget that the group is made up of individuals. And each of those individuals, like Allan Karlsson in the Jonasson books, is deserving of respect and acceptance as a person. It certainly helps that Karlsson exhibits a rare degree of integrity, good judgment, and cleverness. To be sure, he gets into the most implausible of scrapes—such as when he and his sidekick are rescued by a North Korean ship after their hot air balloon (which they used to leave Bali without being restrained by the resort owner to whom they owed thousands of dollars) fell into the Pacific—but his ingenuity in removing 8 pounds of uranium from the possession of Kim Jong-Un is delightful. He manages to get to the US and plans to hand over the radioactive material to Donald Trump, but thinks better of it after he meets Trump, commenting that “he [Trump] was about to explode even without any blueprints for how it should be done.” Hence, Karlsson explained, he and his friend were “wondering if we might find terminal storage for the documentation in safer hands.”

While not exactly brilliant satire, The Accidental Further Adventures gives us an opportunity to see how western Europeans, in particular Swedes, see figures such as Trump, Putin, and Merkel. It’s an amusing romp and its now 101-year-old protagonist makes an enchanting hero.

Gray is In

This past week, the Wall Street Journal ran an article titled, “The Hottest Hair Color of the Moment is…Gray.” Granted, it was in the “style and fashion” section (who knew there was such a thing?). Presumably, the WSJ was interested primarily because the market for hair dye is enormous. What is the significance of this trend? 

The article raises the possibility that the development represents a changing view of beauty, and perhaps even more fundamentally, a changing view of aging. Change in societal attitudes towards aging would be most welcome—and with the proportion of the American population that is over 65 now 15 percent, and expected to rise to 24 percent by 2060, overdue.

It would not be the first time that attitudes underwent a profound shift. In colonial America, historians David Hackett Fischer (Growing Old in America, NY: Oxford University Press, 1978) and W.A. Achenbaum ("Old Age in the New Land," Baltimore: Johns Hopkins University Press, 1980) both argue, most older people received “deference and respect [although] little love or affection.” This attitude reflected the Calvinist tradition, which venerated old age as “proof” of God’s favor. In New England, the choicest seats in the meeting house were accorded the oldest members—not those who made the largest donation. Distinguished statesmen wore white wigs as a mark of sagacity. 

George Washington on his horse

But the view changed by the post-Civil War period: Fischer says the transition to a youth-biased culture occurred between 1770 and 1820; Achenbaum places it in the 1860s, but somewhere during that time, old people fell out of favor. Arguably, things got worse in the twentieth century, with social security resulting in resentment towards older people.

But whether it was a social revolution (the rise of egalitarianism after the French Revolution) or the industrial revolution (the decline of agrarian paternalism and the demise of primogeniture that had kept the young under their father’s yoke) that triggered the shift, there is no doubt there was a shift. Today, by contrast, the major change is demographic (in 1700, an estimated 20 percent of the population could expect to live to age 70; today, 80 percent can) and medical (today, many older people remain vigorous for many of their post-retirement years). The social reality is that older people in the workforce limit the possibilities of the young—the most egregious example is the university tenure system, which can literally fossilize an entire department. And while physical function often remains good as Americans age, the scourge of dementia remains, especially among the oldest old, or those over age 80.

It’s hard to be sure what the interest in gray or silver hair dye signifies. My suspicion is that gray is just another color on the palette and thus represents a new market opportunity. Just as the past few years have brought us pink hair and purple hair, orange hair and blue hair, so now we are adding shades of gray to the list of options. There is no evidence presented in the article that a larger number of older people are opting to stay gray—evidently, they continue to dye their hair blond at the same time that younger people choose gray. 

At the heart of the issue is whether people are willing to accept themselves, and others, as they are. As long as older people opt in large numbers to dye their hair, we can be pretty sure that attitudes towards aging remain unchanged.

Me

What We Believe

Kudos to the Huffington Post for running an article about the new report from the FrameWorks Institute, “Gauging Aging: Mapping the Gaps Between Expert and Public Understandings of Aging in America.” And shame on the NY Times, the  Washington Post, the Wall Street Journal, and the other major newspapers in America for ignoring it. That’s not entirely surprising since the report is all about the disconnect between public perception and reality, and the media are to a large extent responsible for shaping popular understanding.

The new study does not report the results of an opinion poll. It is not based on trendy focus group analysis. It seeks to understand what both geriatric experts and the lay public believe about aging and the “assumptions and thought processes” that underlie their opinions. The authors, supported by funding from AARP and a variety of foundations including the John A Hartford Foundation and the Retirement Research Foundation, use a “cultural-cognitive approach” to their work. That means they probe, they explore, they question. They do not rely on “big data.”

So what did they find? They learned a great deal about the gaps between the scientific understanding of aging (by which I mean physiologic, medical, psychological, and sociologic) and the public’s view. They learned so much that I will just touch on some of the highlights here.

Attitudes toward aging: the experts see aging as presenting challenges, but also an opportunity for growth and the possibility of continued contributions to society. The public sees aging as the enemy, to be combatted rather than embraced or supported. In particular, aging is thought to bring with it decay and disability; in fact, older people are very heterogeneous.

Root cause of aging: Americans tend to believe that what happens to them is entirely within their control. If they eat right, exercise, and lead a virtuous life, they can avoid the aging process entirely. The truth is more nuanced, with both genetic and external factors playing a significant role. In a similar vein, the public tends to believe that if older people do become disabled or demented and cannot take care of themselves, then their family rather than the government has an obligation towards them.

What we need in order to age well: The experts see a need to create structures to facilitate older engagement—whether opportunities for part time work, better transportation, or more volunteer positions. A related theme is the need, recognized by experts, for new public policy initiatives to modify today’s reality. The public, by contrast, takes the status quo for granted and assumes it’s up to older people to avail themselves of existing options.

There’s more. Maybe I will write more about this subject next week. Better yet, just read the study. And I look forward to future work from the FrameWorks Institute addressing how to change popular perceptions. Maybe they will shed some light on how to modify the public view of climate change and evolution, too.

The Five Percent

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

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

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

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

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

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

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

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

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