February 05, 2020

Let's Hear It for Caregivers!

            As a geriatric and palliative care physician, I have provided medical care to many patients in their homes. They are typically very sick: some of them are frail, some suffer from dementia, a number are approaching the end of life. They have spent time in doctors’ offices and x-ray suites and in emergency rooms, they have been hospitalized, and they have had more than their share of operations and procedures. Most of them are at a point in their lives where want to stay at home for treatment. But because of their own physical or mental limitations, they cannot participate extensively in their own medical care. They do not have the mobility to get to a pharmacy to fill prescriptions, they do not see well enough to draw up their own insulin in a syringe, and they do not have the dexterity to change the bandage on a skin ulcer. They depend on a family member or, in some cases, a hired aide, to help them. It is for these patients and the family members who take care of them that I decided to write a book. It would be directed principally at caregivers, at the unpaid, unsung, and unsupported millions who are the backbone of care for frail older people.
            I have met many of my patients’ family caregivers. They are caring, conscientious people who want to do the right thing for their mother or father, sibling or spouse. But they aren’t comfortable administering intravenous medications or giving injections because they worry they might make a mistake, with potentially serious consequences. They want the best medical care for their relative, and if that means bringing them to the hospital every time their shortness of breath gets worse or they have chest pain, that’s what they will do, even if their family member pleads with them to let them stay home. Caregivers would feel guilty if they did anything else because they don’t feel knowledgeable enough to adjust medication doses or oxygen flow rates on their own or to suggest such a course of action to the physician. They haven’t gotten the training necessary to troubleshoot when the medical equipment they are expected to use misbehaves. As a result, many of the oldest and frailest patients are repeatedly hospitalized. The hospitalization commonly leaves them weaker, more confused and more debilitated than they were before admission. Some of them spend months going first to the hospital, then to rehab, then back to the hospital, only to die, perhaps before ever returning to the comforts of home. Not the path that they wanted.
            I discovered that by working closely with family caregivers, by providing them with the knowledge and support they need, this cycle can be interrupted. It’s a multi-step process that begins with a review of the patient’s overall medical condition. It turns out that often either the patient, the caregiver, or both have serious misconceptions about the nature of the patient’s illnesses, how they will evolve over time, and how they are likely to affect the patient’s well-being. Then we talk about what is most important to the patient. Is it to live as long as possible, no matter what the cost in pain, suffering, or institutionalization? Is it to remain as comfortable as possible? Or is it to stay at home and remain independent? Usually, patients want to live as long as possible and be comfortable and be independent at home. The reality is that life is full of trade-offs, and medical care for frail adults is no exception. Based on a realistic understanding of the patient’s general health and a frank conversation about the goals of medical care, we can develop strategies for addressing the medical problems the patient is most likely to develop. If she has chronic lung disease, for example, we can be fairly certain she will periodically develop worsening shortness of breath. When that happens, should the caregiver bring her relative to the office? To the emergency room? Or could she try modifying the amount of oxygen her family member is getting, perhaps supplemented by antibiotics, consulting with a member of the medical team by phone?
            Key to the success of this approach is the relationship between patient, caregiver, and physician. Critical as well is the willingness of the physician to partner with patients and their caregivers. But its effectiveness also depends on the caregiver having basic knowledge about the patient’s medical condition and strategies for addressing problems as they arise.  I believed that a book that guides families along the way could help overcome some of the obstacles to patients getting the kind of care they want as they age. And so, what would become The Caregiver’s Encyclopedia: A Compassionate Guide to Caring for Older Adults was conceived.

            I started the book by discussing how to navigate through medical institutions such as the hospital, the physician’s office, and the rehab facility. Then I decided to add a section about the most common chronic conditions such as heart failure, high cholesterol, and high blood pressure. Next, I added a section on management of acute symptoms: since patients typically say “I’m short of breath” and not “I’m having an exacerbation of congestive heart failure,” I organized this part by symptom. Then I realized I could demonstrate how the caregiver’s response to an acute medical symptom such as nausea or dizziness might vary depending on the goals of care, so I modified the chapters accordingly. The result is a comprehensive guide to medical care for frail older people. I hope that families will view it as a companion to take with them as they proceed along the caregiving journey. It can be a difficult journey, but it can also be rewarding and enjoyable.  Caregivers just need the right tools and a friendly guide to assist them.

January 19, 2020

Where Have All the Doctors Gone?

The New York Times began the new year with a spate of bad news, including a column with the imploring title “Older People Need Geriatricians” and the despairing subtitle, “Where Will They Come From?” The author, Paula Span, who has for years written insightful and informative articles about aging, made a number of valid points about the shortage of geriatricians: projections are that the US will need over 33,000 geriatricians in just five years, but there are only about 7000 in practice today; and one-third of training slots in geriatric fellowship programs went unfilled last year. 

What struck me about the article is that I recall the NY Times running a very similar piece a few years ago. A quick search revealed that indeed, exactly 4 years ago, the Times had a piece called “As the Population Ages, Where Are the Geriatricians?” This essay pointed out that geriatricians are just about the lowest paying subspecialists in the US, earning less than half of what a cardiologist typically makes. They even make significantly less than a general internist—though geriatricians have more training.

The Times is not the only major newspaper to bring the issue to public attention. As far back as 2013, the Wall Street Journal had a column “Desperately Needed: More Geriatricians.” A year later the same paper ran another piece with the same theme but a possible fix. Entitled “A Remedy for the Looming Geriatrician Shortage,” it reported on a consortium involving four medical schools, Icahn, Johns Hopkins, Duke, and UCLA, that focuses on training medical school teachers. Instead of aspiring to develop full-fledged geriatricians, they offer 3-5 day, intensive training modules to medical school faculty members to enable them to transmit expertise in falls, dementia, incontinence, delirium, and other geriatric topics to their students. Funded by the Reynolds Foundation, the program had managed to train 430 physicians over the course of 10 years. The “Program for Advancing Geriatrics Education” (PAGE) ended in 2017.

The real problem, as implicitly acknowledged by PAGE, is not so much the shortage of geriatricians as the lack of geriatric medical expertise. So why has it been so difficult to remedy the situation—the gap between supply and demand has been growing, not shrinking? And what are we going to do about it?

Several explanations have been advanced, each with a corresponding solution. Since compensation for geriatricians is comparatively poor, economists argue, just improve salaries. This means modifying the Medicare fee schedule since the patients under discussion are almost all on Medicare. Since it’s going to be very hard to increase the size of the total pie, giving a larger share to physicians who see geriatric patients will mean giving a smaller share to cardiologists and orthopedists. That won’t go over well with the cardiologists and the orthopedists, not to mention the gastroenterologists, ophthalmologists and other procedure-oriented specialists, who are all well-paid under the current system. Pervasive ageism is another probable cause. More physicians are likely to want to care for older patients if the society as a whole values older people. Society doesn’t and physicians, who are after all members of society, tend not to either. In fact, the reason that so many of the young physicians who accept geriatric fellowship residency slots are from other countries is that ageism is perhaps not so endemic in the developing world. Changing attitudes is going to be even more difficult than modifying the Medicare fee schedule. 

In light of the obstacles faced by each of the proposed solutions, we need to turn to a quintessentially geriatric way of looking at the world: instead of seeking a magic bullet, instead of expecting that there is one root problem and therefore just one problem that needs fixing, we should accept that the problem is multifactorial. Poor reimbursement, ageism, the absence of procedures, insufficient role models all contribute to the shortage of geriatricians and the lack of geriatric expertise among generalist physicians (both internists and surgeons). The fix will likewise have to be multifactorial. Build on pioneering strategies that involve co-management by a geriatrician and an orthopedist for hip fracture patients. Develop screening tools for frailty and refer the frailest of the frail to geriatricians. Maybe we can’t make a great deal of headway in any of these arenas, but perhaps we can improve things a little bit in each of them. And that would be a good start.


December 30, 2019

Never Say Old

As a brief follow up to her important 2011 book, Never Say Die: The Myth and Marketing of the New Old Age, the writer Susan Jacoby published an editorial in the NY Times this past week. 

Provocatively entitled,  “We’re Getting Old, but We’re Not Doing Anything About It,” she points out that the presence of 5 septuagenarian presidential candidates (Biden, Sanders, Warren, Bloomberg, and Trump) falsely encourages the population to think that 75 really is the new 50 and that aging doesn’t bring with it the risk of frailty, dementia, and disability. Jacoby, in her usual incisive way, argues this view is mistaken—and dangerous.

In fact, while many people do remain vigorous well into their seventies, and a smaller but not inconsequential percentage continue to be robust well into their eighties (and an even smaller percentage into their nineties), the risk of developing one or more medical conditions that get in the way of independence and well-being rises steadily with age. The much vaunted “compression of morbidity,” the dream that we will all remain totally intact until precipitously, preferably during sleep, we die, hasn’t quite materialized. Jacoby cites a study reporting that one in seven people who are 65 years old today can expect to experience 5 or more years of disability before they die. Dementia rates are falling—but since the size and proportion of older people is increasing, the absolute number of people with dementia is projected to rise steadily. According to the Alzheimer’s Association, there are 5.6 million people over 65 with dementia today, there will be 7.8 million in 2025—and 13.8 million in 2050. Frailty remains a major problem: a 2015 population study in the US found that while only 10.7 percent of people age 65-69 were frail, among the 75-79-year-olds the rate was 20.1 percent, and for those aged 85-89, it was 37.9 percent.

So, what are the implications of this reality? Jacoby offers three: provide more support for caregivers; encourage employers to allow vigorous older adults to continue working; and address various medical ethical issues such as physician assisted suicide. This is a good beginning—and about as much as one can reasonably put into a NY Times op-ed—but there are many others.

Here are a few additions: In the arena of housing, we need far more housing that is handicapped accessible. Doorways should be wide enough for wheelchairs, buildings should be on a single level or have elevators. In the domain of urban planning, communities need to be walkable with extensive and accessible public transportation. In terms of medical care, the overriding issue is not care of the dying, but how best to care for the living. We need far more attention to function: to maintaining and fostering basic abilities such as mobility and higher-level abilities such as cooking and shopping. To achieve this end, physicians need to assess function, they need to know how to diagnose frailty, and they need to know how to promote and support function. Physicians also need to determine the old person’s goals of care and to work with patients and family caregivers to develop an approach to treatment that is consistent with those goals.

The new year will begin in just two days. Among our resolutions for the coming year should be a commitment to making America a better place for us as we get old—and I agree with Jacoby that we should abandon the foolish euphemism “older people” and stick with plain “old.” This should be a resolution we actually follow.

December 19, 2019

Caregivers Redux

In a recent issue of JAMA Internal Medicine, Drs. Sterling and Shaw from Cornell Medical Center make a case for physicians to pay greater attention to caregivers, both informal (unpaid, typically family members) and professional (paid). They argue that physicians will do a better job caring for patients suffering from frailty, dementia, or disabilities if they include them in their visits. The authors highlight how helpful caregivers can be, both as a source of information and as an instrument for implementing a treatment plan. They are right: it is high time physicians acknowledged the importance of caregivers and expanded the sacred doctor/patient relationship to include them. To that end, the authors exhort physicians to list the names and contact information of caregivers in the medical record and to ask their patients for permission to incorporate them in health-related discussions. But they fail to grasp the extent to which caregiver involvement can transform their patients’ medical care.

It's not just that caregivers, whether a daughter or a home health aide, might whisper into the patient’s ear that she should mention she’s been having episodes of incontinence—an example cited in the paper. It’s not only that caregivers might report memory lapses that the patient does not admit or remember she has been having. The availability of an on-site caregiver may enable the physician to embark on a course of therapy that would be unthinkable without a reliable partner, someone who can try various strategies and report back on their effectiveness. Much as a visiting nurse can serve as the eyes and ears of a physician at home and thus amplify the available treatment options, so too can caregivers potentially administer medication and inform the physician of the results in real time. Caregivers don’t just manage medications, as the authors imply, by purchasing drugs at the pharmacy and perhaps putting them in pill dispensers. They can learn to adjust dosages, decreasing warfarin in the presence of antibiotics or cutting the insulin dose in the face of gastroenteritis, perhaps allowing for home instead of hospital care. And caregivers don’t just provide inputs to physicians and follow orders. They can also be valued and indeed invaluable participants in discussions about what approach to care makes sense for a given patient. Does Mrs. Jones want all possible medical treatment, however invasive and however unlikely to work, in an effort to prolong life? Or does she want, above all, to stay in her apartment and be comfortable? Or is her main concern the ability to read and to play the piano so she will accept whatever medical interventions and supportive strategies are conducive to achieving these ends. Not only can caregivers help elicit the patient’s goals of care, but they can also evaluate whether the community supports (family, paid caregivers, financial resources) are adequate to implement a given plan.

So yes, it’s time to acknowledge the existence and importance of caregivers. But letting them in the examining room is just the first step. Caregivers need to be integrated into the medical team. They have a crucial role to play, just as do social workers and nurses. They are the key to better medical care, with “better” implying care that is in line with the patient’s preferences and values, not merely care that accords with the physician’s idea of optimal care. If those preferences translate into home rather than hospital as the site of care, they may even mean less expensive care.

     For more on helping caregivers in their role as members of the medical team, see my forthcoming book: The Caregiver's Encyclopedia: A Compassionate Guide to Caring for Older Adults.

December 10, 2019

Falling Down on the Job

We’ve heard about older people who don't go out because they're afraid they will fall. A new article in Kaiser Health News reminds us that hospitals, too, fear that patients will fall--and goes on to say that hospitals respond by keeping patients in bed, which causes its own harms. This is an important issue: as the author is at pains to tell us, 30 percent of patients aged 70 and older have more trouble carrying out the most basic tasks necessary to get by (things like getting to the bathroom or eating or dressing) when they leave the hospital than they did when they were admitted. 

Some of that deterioration is directly attributable to their acute illness, but some of it stems from the way that doctors and nurses in hospitals treat people with acute illness: they put them to bed. And if they worry their patients might fall on the way from the bed to the bathroom or to the nurses’ station, they do everything in their power to prevent them from getting out of bed. They put signs on the door saying “fall risk;” they write orders indicating the patient is not to get up without assistance; in some cases, they apply physical restraints. 

Some of the interventions meant to decrease falls don’t actually work: one particularly notorious example is side rails, which until relatively recently were widely believed to prevent falls but in fact increase the chances that if a patient does manage to get out of bed he will hurt himself. Bed alarms are another strategy that studies have now shown don’t work. But even those strategies that do decrease falls come with a steep price tag if they work by keeping patients in bed: they result in weakness, in problems with self-care, and sometimes result in serious other problems such as a blood clot. Melissa Bailey of Kaiser Health News is to be commended for bringing this issue to public attention. But what prompted her to write this article now, in December, 2019? 

Was a new study published, bearing on the issue? If so, Ms. Bailey did not cite it. Did the author have a friend or family member who deteriorated during a hospital stay because she was immobilized? Not as far as we know. Were the perils of bedrest recognized only recently? Actually, we’ve known about the hazards of immobility since at least 1960. Previously, a patient with a heart attack was treated with strict, prolonged bedrest—until it became clear that this approach led to life-threatening blood clots and other problems. Is the topic new for Kaiser Health News? In fact, KHN addressed this issue in 2016: Anna Gorman published an essay with the title “Elderly Patients in the Hospital Need to Keep Moving.” This article did not make the link between immobility and the effort to prevent falls, but it did focus on the need for older patients to get out of bed and walk. Have any articles made the connection between immobility and fall prevention more clear-cut? Two years ago, an opinion piece in JAMA Internal Medicine made that link very explicit, calling their article “The Tension Between Promoting Mobility and Preventing Falls in the Hospital.” These authors argued that Medicare’s campaign to decrease falls had created disincentives to hospitals to promote mobility—with foreseeable and regrettable consequences. So, what’s going on here?

The problem is that despite the longstanding recognition that patients in general and older patients in particular need to get up and move while they are in the hospital, practice has not changed dramatically. More accurately, it’s changed since the time when heart attack patients were kept at strict bedrest for three weeks or longer, but there has been some backsliding as hospitals try to combat falls, another major problem. And Medicare incentivizes hospitals to minimize their fall rates by penalizing them financially for “injurious falls” in their patients, but it doesn’t do much to encourage hospitals to prevent “functional decline” in those same patients. 

The authors of the 2017 essay recognized the seeming conflict between minimizing falls  and maximizing mobility; their conclusion was that Medicare should also incentivize hospitals to get patients moving. It’s a great example of “teaching to the test,” of hospitals focusing on what they’re being evaluated on—to the detriment of everything else. I’m not convinced that the right strategy is for Medicare to add yet another domain to its list of areas-covered-on-the-test. At the very least, the agency should consider rewarding good behavior rather than punishing bad behavior, since I fear that further declines in reimbursement will result in generally poor quality care.

What about patients and families? What can they do to tip the scales in favor of maintaining function? They can be the squeaky wheel that asks for a physical therapy consultation. Family members can volunteer to walk with their relative in the halls of the hospital. And there’s always my favorite solution—stay out of the hospital if at all possible. When the physician in the emergency department insists “you need to be admitted,” she’s probably thinking of all the advantages of inpatient care, but not the disadvantages. So, ask about home care. It’s not the answer if you need an operation or a procedure, but if it’s intravenous antibiotics you need, or blood thinning medication, it just might make a lot of sense.

November 17, 2019

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

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

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

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



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



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

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

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

October 27, 2019

Rescinding the DNR order--for anti-amyloid drugs


The pharmaceutical firm Biogen issued a stunning press release this week: it would seek FDA approval for its anti-Alzheimer’s drug, Aducanumab—the very same drug the company had pronounced a failure just last March, after preliminary analyses indicated the drug was very unlikely to achieve its objectives. Dennis Selkoe, a prominent Alzheimer’s researcher at the Brigham and Women’s Hospital in Boston, wrote in STAT (a health-oriented news website owned by the Boston Globe) that he believed that “aducanumab is the breakthrough we have been waiting for.” But is it?

Aducanumab is by no means the first drug studied that targets beta amyloid, a protein widely believed to play an important role in the development of Alzheimer’s disease. An article in Nature Reviews (Drug Discovery), published shortly after the first analysis of the Aducanumab data, put the drug in perspective: a monoclonal antibody that binds to beta amyloid, it is the fourth such drug to make it to a Stage III clinical trial. And all three of its predecessors, as well as another five anti-amyloid drugs that have a different mechanism of action, were abysmal failures leading Nature Reviews to proclaim "Anti-Amyloid Failures Stack Up as Alzheimer's Antibody Flops." Maybe what this new analysis of the Aducanumab data has done is to reverse the Do-Not-Resuscitate label previously attached to monoclonal antibodies and instead put them on life support. So, what, exactly, does the new data analysis show? 

The details will be released to the FDA when Biogen files with the FDA to approve the drug. Thus far what we know is what Biogen has included in its press release. Biogen conducted two randomized, double blind, controlled studies, giving the monoclonal antibody (presumably by injection, like other monoclonal antibodies) or placebo to a total of 3285 patients and following them, some for 78 weeks. One study, sporting the acronym ENGAGE, produced negative results even upon re-analysis, although a subset of ENGAGE patients who received a high dose of the drug appeared to respond. The other study, named EMERGE, showed a reduction in the rate of clinical decline in treated patients compared to those receiving placebo. In other words, the study patients did not improve nor did they plateau; rather, they got worse more slowly. Unfortunately, the press release doesn’t report the absolute magnitude of the change, opting instead to say that the scores on the Mini-Mental State Examination (MMSE), a commonly used measure of cognition, fell 15 percent less with treatment than with placebo. Similarly, the rating on the ADAS-Cog13, another measure of cognitive function, declined 27 percent less in those on the drug. Finally, and perhaps most encouragingly, the decline in the ability to perform basic daily tasks (as measured by the Alzheimer’s Disease Cooperative Study Activities of Daily Living Inventory) was 40 percent lower in those receiving Aducanumab than in their counterparts who received placebo. 

These are not spectacularly impressive results—the patients continued to worsen and the difference between treated individuals and untreated individuals, at least on measures such as the MMSE, was very small. But what we don’t know is whether the slowed rate of decline will persist over time or whether, as with drugs that are currently on the market such as donepezil (Aricept), there is a one-time effect. We don’t know whether the effect would be greater if the medication were used earlier in the progression of Alzheimer’s disease, perhaps in people with mild cognitive impairment. We don’t know whether the drug will prove to be more effective in those with “pure” Alzheimer’s disease, that is, without concurrent vascular changes. 

What we can predict is that if the drug is approved by the FDA, Biogen, whose stock price soared after the press release, will aggressively market the drug. An estimated 5.8 million Americans have Alzheimer’s disease, according to Alzheimer’s Association statistics released in 2019: since the time from diagnosis to death is 5-7 years, roughly one-fifth of the affected individuals or over a million people likely have early Alzheimer’s and are potential Aducanumab consumers. This could be a dream come true for the pharmaceutical company--a blockbuster specialty drug. (Blockbuster drugs are prescribed to at least one million people a year and specialty drugs are very expensive biologicals such as monoclonal antibodies). And if the sales price for the drug is anything like that of other newly marketed monoclonal antibodies, it may be upwards of $1000 per month (Dupilumab, brand name Dupixent, a new monoclonal antibody used in the treatment of asthma and/or nasal polyps, has a list price of $37,000 per year). 

Biogen stockholders will benefit enormously; how much people with Alzheimer’s disease will benefit is less clear. But on a more positive note, as Dennis Selkoe commented in STAT, for the first time we have evidence that it is possible both to design molecules that target amyloid and to administer them to real people with minimal toxicity and some evidence of benefit. That truly is good news.

October 07, 2019

Clearing the Air

I’ve been reading “The Uninhabitable Earth: Life After Warming,” an extensively researched account of where we are headed that begins with the warning: “It is much, much worse than you think.” When I got to the chapter depressingly entitled “Unbreathable Air,” I encountered the following shocking sentence: “Pollution has been linked with increased mental illness in children and the likelihood of dementia in adults.” Now I’ve seen all kinds of things associated with dementia: head trauma, assorted medications (anticholinergic drugs, anti-anxiety drugs, and anti-ulcer drugs), aluminum. Some of those links have become well-established over time, such as head trauma. Some of have been totally debunked, such as aluminum. Others are questionable and I’ve written about them on this blog (drugs). But air pollution? This was a new one to me. 

Most likely, I figured, it would prove to be another spurious association. Probably, I thought, there was some other factor that was associated with both air pollution and dementia. The alleged connection would be like the link between washing machines and colon cancer—a favorite example of a “confounder” from my medical school epidemiology class. People who own washing machines, it turns out, do have a higher rate of colon cancer than people who don’t. But they also vary in where they live and what they eat, which is far more important than their possessing a washing machine. Surely air pollution was likewise a marker for something that did matter. But then, as I read on in Wallace’s book, I came to an even more dramatic statement: “An enormous study in Taiwan found that, for every single unit of additional air pollution, the relative risk of Alzheimer’s doubled.” This I had to look into.

The “enormous study in Taiwan” was published in a minor but respectable journal, the Journal of Alzheimer’s Disease in 2015. It was large: it was a cohort study of 95,690 adults aged 65 and older followed prospectively for 10 years beginning in 2001. Not only was it large, but it was a random sample drawn from Taiwan’s National Insurance Research Database comprised of 23 million people, or 99 percent of the entire Taiwanese population. Moreover, Taiwan has 70 EPA monitoring stations distributed over the island, allowing it to have reasonably accurate measures of both ozone exposure and small (less than 2.5 micrometers) particulate measure. Finally, the population is fairly stable over time, allowing for fairly good estimates of exposure based on home address. The conclusion? The risk of newly diagnosed Alzheimer’s disease (adjusting relevant co-morbidities such as stroke, hypertension, and diabetes) rose steadily with the rate of exposure to ozone or small particulate matter—going up, for example by 211 percent for each 10.91 ppb increase in ozone.

Taiwan isn’t the only place where a relationship between air pollution and dementia has been discovered. In 2017, a similar study entitled “Exposure to Ambient Air Pollution and the Incidence of Dementia: A Cohort Study,” appeared in Environmental International. Carried out in Ontario, Canada and involving a cohort of just over two million adults, this analysis attributed just over six percent of all dementia cases to air pollution. 

Neither study is conclusive, but they’re awfully suggestive. I wondered if there had been any further work on this subject since Wallace wrote his book. Lo and behold, a systematic review was just published by Peters et al from Australia, also in the Journal of Alzheimer’s Disease. These authors found thirteen reasonably well-conducted studies bearing on the question. They concluded that small particulate matter (containing nitrogen) and carbon monoxide are both associated with an increased risk of dementia. 

These reports are very disturbing in light of the Trump administration’s systematic assault on air pollution regulation. According to an article just published in the New York Times, 85 environmental rules are being rolled back, including 24 in the arena of air pollution. Of these 24, 10 have already been undone and another 14 are “in process.” 

We already know that climate change will have an enormous impact on health, principally through its multitudinous indirect effects—for example, by causing drought, which in turn affects agricultural productivity, which in turn results in death. Now there may be another health risk to add to the list of adverse effects of environmental harm. Dementia is such an enormous public health problem that even measures that only slightly affect the risk of developing this devastating condition may be worthwhile. But the good news is that air pollution is an area where we can intervene. We even know how to. The last thing we should be doing is unraveling the progress we have made. So, speak up, tell your senators and representatives to act, and vote wisely to decrease the pollution that threatens us all.


August 28, 2019

Good and Old

            The solution to my dilemma was staring me in the face: if I didn’t find the new 

developments in medicine of sufficient interest to blog about, and if I didn’t think my readers

—a motley collection of people interested in aging—would find those developments of great 

interest either, I should write about great books. I would re-read the books that influenced 

my thinking twenty or more years ago. After all, just because the ideas in those books have 

become integrated into my world view, just because I take them for granted, doesn’t mean 

they are trite or passé. Nor should I assume that most people, particularly the younger 

generations, are familiar with those seminal ideas.

            I first realized that not everyone who cares about old people—not even everyone 

trained as a specialist in caring for older people—has read what I consider the great works 

of geriatrics, whether books or essays. Several years ago, I was giving a talk to a group of 

well-educated, exceptionally smart and ambitious young doctors and I mentioned the 

longstanding disconnect between the kind of care patients say they want near the end of life 

and the kind of care they actually get. I traced the history of the recognition that such a gap 

existed and reviewed the early strategies for overcoming it, so of course I referred to the 

SUPPORT study. The faces of the well-educated, exceptionally smart and ambitious young 

doctors looked blank. Hesitant to go over well-trod ground, but not wanting to make any 

unwarranted assumptions about what my audience knew and what they didn’t, I asked how 

many of them were familiar with SUPPORT. Not a single hand was raised.


            The SUPPORT (The Study to Understand Prognoses andPreferences for Outcomes 

and Risks of Treatments). The study was a large, randomized trial conducted at 5 U.S. 

hospitals and involving over 5000 very sick patients, people who had one of a handful of 

conditions and a high likelihood of dying within the next year. Phase I of the study 

established that a majority of these patients, provided they were informed of their prognosis 

(which few had been) favored certain limitations of treatment but that only a minority 

received treatment that accorded with their wishes. Phase II of the study showed that when 

specially trained nurses told patients their prognosis, elicited their preferences, and 

transmitted those preferences to the attending physician, the lack of concordance persisted. 

As an intervention trial, this multimillion dollar, Robert Wood Johnson Foundation supported 

study was a resounding failure. But as a descriptive study showing, for example, the 

proportion of seriously ill people who died in pain or despite invasive technology, it was a 

landmark work. And the failure of the particularly remedy was also illuminating. 


            SUPPORT is now 25 years old but it was crucial to all subsequent work in the area 

of advance care planning, It defined many of the norms by which “good” end of life care 

would be measured. It launched the careers of numerous researchers who struggled to 

understand why SUPPORT flopped, on the one hand, and how to achieve its aims in the 

future, on the other. The truth is, we are still today trying to figure out how best to explain to 

patients the way their diseases are likely to unfold, what their options are, and to help them 

translate their personal values into a viable treatment plan.

            Ignorance about SUPPORT is no anomaly. Last month, Daniel Callahan died, one of 

the giants of American biomedical ethics. I am old enough to remember reading his 

controversial book, Setting Limits, when it first came out in 1987. At last, I recall thinking, a 

philosopher who is not floating in some abstract universe of ethical principles, but who is 

grounded in clinical reality. I also remember browsing in my local bookstore, which 

somewhat bizarrely shelved its books according to publisher, regularly seeking out the 

Simon and Schuster section, eagerly awaiting Dan Callahan’s next book. I read them all and 

eventually I got to know Dan Callahan himself, as kind, generous, and modest as he was 

insightful and path-breaking. So, I was shocked and dismayed to realize that young 

physicians today, even those with a background and interest in ethics, typically know that 

Daniel Callahan co-founded the Hastings Center, the foremost American biomedical ethics 

think tank but have never read Setting Limits.


            So we come to the new plan: I will write about the classics. Not the Iliadand the 

Odyssey. Not IL Nascher’s book, Geriatrics: The Diseases of Old Age and Their Treatment

which laid the groundwork for a new field but which is now hopelessly out of date. Instead, I 

will peruse my own bookcases and write about those books that deserve to be read and re-

read. I will get to Setting Limits soon. But the first book I’d like to blog about was not written 

by a geriatrician or a philosopher nor a historian, but by a novelist. It’s Patrimony by Philip 

Roth and it’s one of the finest depictions I have ever encountered of frailty, on the one hand, 

and of the perils of medical decision-making on the other. It is one of Roth’s only forays into 

non-fiction and in it he tells the story of the final year in the life of his father, Herman Roth. 

Reading this fine book now is particularly poignant because Roth Senior was 86 in the 

narrative and Philip Roth, the son, died a year ago at age 85.


            WhatPatrimony is really about is the relationship between a father and a son, which 

may not seem like a geriatric issue. But from my perspective, relationships are the 

quintessential geriatric issue. One of old age’s principal challenges is to find meaning in life, 

often in the face of loss, illness, and disability. One of the principal sources of meaning is 

relationships, and what relationship is more profound than that between a parent and child. 

What makes Patrimony  so special is that Philip Roth, who sounds as though he had for 

years found his father endlessly annoying: he was not an intellectual, he had a habit of 

constantly correcting and cajoling those he cared about, and he simply wasn’t interested in 

the same things as Roth Junior. But over the year that Philip shepherded his father from his 

brain tumor diagnosis to his eventual death, he came to accept his father’s foibles and to 

appreciate his strengths. It is with affection and understanding that he reports his father’s 

penultimate question to the neurosurgeon he saw in consultation about the tumor: “What do 

you use to go in there? Do you use General Electric or Black and Decker?”


            The book shows us how painful loss is—and why we are so reluctant to let go. When 

driving from New York City to Elizabeth, New Jersey, where his father lives, a route he has 

taken countless times, Philip Roth makes a wrong turn and ends up at the cemetery where 

his mother is buried. He visits his mother’s grave and we see that though he is a famous 

author, financially successful and, at least during the writing of the memoir, enjoying a 

fulfilling romantic relationship, his mother is still “Mommy.”


            Roth the novelist is known for raw and explicit details, usually in the sexual arena. In 

Patrimony, he is raw and explicit in his description of his father’s difficulty chewing and 

swallowing and of a bout of incontinence. He shows the devastating loss of dignity that 

makes frailty so difficult to endure—and how acceptance of his father, despite his difficulties, 

is the way to transcend frailty.


            Finally, Roth’s book shows how the medical profession pushes patients and families 

toward aggressive treatment. Surgery to remove Herman Roth’s tumor is variously 

described as requiring an 8- or even 10-hour operation or two multi-hour procedures, either 

way, an unequivocally major ordeal. But surgery, from the medical professional’s 

perspective, offers the only path to improvement, though the likelihood of achieving 

improvements is not great and the chance of surgery making things worse is considerable. 

As the story unfolds, the Roth family gradually come to see that the best course of action for 

the 86-year-old Herman is supportive.  There’s even a poignant acknowledgment that 

advance care planning is often harder for the family than for the patient: Philip Roth 

struggles for days to discuss a living will with his father. He says it was harder for him to 

broach limiting treatment than it had been to talk about the brain tumor diagnosis. With the 

tumor, he could behind terms such as “benign,” ignoring the reality that even non-malignant 

growths can cause plenty of mischief and conveniently neglected to mention that the tumor 

was enormous and had already encircled a major blood vessel in the brain. When Roth 

finally does raise the subject of advance planning, he finds his father is matter of fact about 

the process and quite comfortable with setting limits. Herman had sold life insurance for a l

iving; he had “spent his life time talking to people about the thing they least wanted to think 

about.” So, even though Herman Roth can’t resist hoping for “another couple of years” and 

then, by the time he goes for a second opinion, for “3 or 4 years,” he’s a realist and knows 

that the end is coming. As he says, once he’s dead, he won’t have anything to worry about. 

It is his son who will suffer afterwards, who will continue to feel love, affection, respect—and 

loss.


            Patrimony is a geriatric masterpiece. First published 28 years ago, it is not in the 

least bit dated. Father/son relationships, frailty, advance care planning, and death are all still 

around and always will be.

August 19, 2019

Loss

There will be no more email messages with requests for data about the median age of legislators in Western European countries. No emails with provocative observations about the association between the rise in the overall suicide rate and the growing legalization of physician assisted suicide. They all began with “Dear Muriel,” never with “Hi Muriel,” never without a salutation. He is gone, I learned in July. Died just before his 88thbirthday. It was the emphysema that got him in the end.

I realized last night that I haven’t written a single blog post since then. For some time, I’ve been finding it difficult to identify new findings in medicine worth writing about, that is, sufficiently interesting to me to write about them. Vitamin D is the panacea for aging; Vitamin D is out—useless, or worse. Calcium prevents osteoporosis; calcium doesn’t prevent osteoporosis. At long last, Congress passes legislation supporting caregivers; the new legislation won’t achieve much of anything. There’s a new, promising test to identify pre-clinical Alzheimer’s disease; there’s no point taking the test unless you want to enter a research study—or if you want to make yourself miserable sooner than necessary. None of this seemed to matter enough for me to write something about it. And now it matters even less because there is a hole in the fabric of the universe.

For years, I’ve been writing about meaning in old age: the importance of figuring out ways to remain engaged with the world despite age-associated limitations, despite encroaching frailty. I’ve consistently seen the role of geriatrics as facilitating a good old age, where 'good' implies a time to cultivate relationships and contributing to the net goodness in the world. Geriatrics is the means to an end, not the end itself. Sure, preventing or reversing frailty would be nice, but what is even more critical is adapting to whatever life has in store for us, and that's the domain where geriatrics, like palliative care, can make contributions. I’ve also written about accepting mortality, which applies both to people who themselves are facing the end of life and to those who care about them. But I don’t think I’ve said anything about how to cope with loss after death.

I suppose that as a physician, I’ve seen my role as ending when life ends. Dealing with what comes next, whether for the person who has died or for everyone else, that’s someone else’s domain. That’s for religion or psychology or social work. But now I’m facing a hole. Yes, I recognize that life is finite. Yes, birth and death, growth and loss are all natural, normal. But we humans, we are meaning-makers. We need to make meaning out of life even where there isn’t any. We do this with rituals, with ceremonies, with reminiscences. We immortalize the mortal through our memories. So, I will do what I usually do when confronted with something that I see as important: I will write. My writing will not patch the hole, but perhaps it will serve as a sort of ornamental curtain.

Rest in peace, my friend.


Daniel Callahan, pre-eminent bioethicist and a true mensch, died on July 16, 2019.