June 10, 2019

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! 

June 06, 2019

Our Downfall

Falls have long been known to be a major problem among older people. Even when they don’t cause chronic disability or death, a single fall can lead to paralyzing anxiety. The medical costs alone, for hospital care, rehab, and post-acute care, are enormous: one estimate is that they reached $50 billion in 2015. But despite significant advances in knowledge about fall prevention, new data indicate that the problem is getting worse. In fact, a short “research letter” in JAMA indicates that age-adjusted mortality from falls among people aged 75 and older roughly doubled between 2000 and 2016. 

The data are shocking. The age-adjusted mortality rate from falls for men over 75 went from 60.7/100,000 in 2000 to 116.4/100,000 in 2016. For women, the numbers are even more dramatic, with age-adjusted mortality for those over 75 going from 46.3/100,000 in 2000 to 105.9/100,000 in 2016. 

To understand just how bad things are, it helps to break down the statistics by both age and gender. The overall crude mortality rate for individuals over 75 (2016 data) was 122.2/100,000. For the youngest cohort, those ages 75 to 79, the age-adjusted rate is 42.1/100,000 (52.3 for men). For the 80 to 84-year-old set, the age-adjusted rate doubles to 88.9/100,000 (105.8 for men). For the oldest old, the numbers are extraordinary: going from 171.2/100,000 for those 85 to 89 to 362.5/100,000 for the 90 to 94-year-olds to 630.8/100,000 for those age 95 or older. And the corresponding age-adjusted rates for men are even worse, ranging from 205.2/100,000 to 762.8/100,000.

With statistics like these, you might think no one has a clue as to how to prevent falls. You would be mistaken. Entering “fall prevention in the elderly” as a search term in Google Scholar for the period 2000-2016 yields 18,000 hits. The articles have titles such as “randomized controlled trial of falls prevention” and “falls and their prevention in elderly people: what does the evidence show?” The American Geriatrics Society and the British Geriatrics Society issued a joint clinical practice guideline for the assessment of fall risk and preventive strategies in 2010. Two years later, the CDC decreed falls in older people a major public health problem issue and released a variety of evidence-based materials to help physicians, patients, and families address the problem. Calling their program STEADI (Stopping Elderly Accidents, Deaths, and Injuries), they offered, at no charge, a provider tool kit, a detailed algorithm and a handy pocket guide for clinicians, and a patient information sheet. 

Strategies to diminish falling in older people continue to proliferate. The American Hospital Association along with two other organizations came out with recommendations for addressing the problem in hospitals, where falls are also a major problem: between 700,000 and one million people fall in US hospitals each year and about one-third suffer injuries from their falls. As many as 11,000 people die as a result of the fall.  

The Centers for Medicare and Medicaid Services concluded that falls are preventable—and decided to penalize hospitals if a patient falls and either dies or sustains a serious injury as a result. Medicare considers such falls to be “never events” and will not reimburse hospitals for any additional costs associated with falls.

And yet, despite the research, the policies, and the programs, fall rates are rising, not falling. The burning question is, why?

Analyses of the obstacles—and successes—encountered when health systems tried to implement STEADI are revealing. When Oregon Health Sciences University introduced the program in their primary care clinics, they found the single most important factor conducive to adoption was the presence of clinical champions at each site. These clinicians spearheaded a team effort to develop a clinical workflow, customized for their site. They were also empowered to commission the development of electronic health record tools to document screening and assessment of falls. Other programs similarly reported that without strong endorsement by clinical leadership and the resources to implement and document fall-related activities, the initiatives were dead on arrival.

But if we examine the STEADI algorithm for fall risk screening, assessment, and intervention, we can identify other barriers. 

Falls often have multiple interacting causes and the most successful interventions tend to be correspondingly multidisciplinary. But medicine is much better at dealing with isolated problems than with messy, multifactorial ones: high blood pressure? Take a pill. Pneumonia? Use an antibiotic. 

Now look at the screening that the clinician is supposed to carry out. If a patient answers yes to any of a few key questions, the clinician is supposed to evaluate gait, strength and balance. That means performing a “timed up and go” test and possibly a 30-second chair stand or 4-stage balance test. How many internists or family physicians know what these tests are, let alone routinely perform them.

Then consider the kinds of interventions that STEADI suggests. For high risk patients, the recommendation is to refer to enhance mobility and improve balance, optimize vision, optimize home safety, and address foot problems. For all practical purposes, that means referring the patient to physical therapy, to ophthalmology, to occupational therapy, and to podiatry. Only rarely will a physician be equipped to do any of these things themselves. What’s left? Educate patients—another activity that physicians often delegate to others. Prescribe vitamin D and calcium—controversial these days. Manage and monitor hypotension and medications—the only activities that fall within the orbit of the typical internist or family physician.

What we see here is a profound educational deficit. What’s worse, few of these deficits are skills that physicians are likely to find interesting to acquire. I would argue that what most physicians are excited about is learning about prescribing new medications and using nifty new technology. As a whole—and of course there are exceptions—physicians are less enamored of low tech, low complexity interventions, especially when they deem them to lie outside the bounds of medicine. Advance care planning, which rests on communication skills, has similarly been an area that physicians have been reluctant to engage in. So, if the problem is largely cultural, then strong leadership and a supportive electronic health record, while necessary, are not going to suffice to fix it.

What is the way out? I think two strategies could make an enormous difference. First, nurse practitioners and physician assistants should educate themselves in fall risk screening, assessment and intervention and medical practices should gratefully turn to them for help. Second, patients and families need to clamor for falls assessment. In this era of consumer pressure, what the customer wants may be the key to change.

May 30, 2019

Home Sweet Home

The May issue of the health policy journal, Health Affairs, includes a short but important article by two researchers from Harvard’s Joint Center for Housing Studies. Its title poses the central question of their essay, “what can be done to better support older adults to age successfully in their homes and communities?” They begin with the observation that most of the literature on “supportive housing” for older people focuses on the 20 percent of people over 75 who need significant help to function day to day (many of whom are in fact over 85). They go on to point out that the remaining 80 percent face challenges as well—mobility limitations, impaired night vision—that while not nearly as restrictive as the problems of their counterparts with frailty or dementia, are nonetheless important issues that are seldom addressed from a public policy perspective. And with the over 75-year-olds numbering 14 million today and expected to double by 2038, 80 percent represents a great many people whose housing needs are projected to be inadequate.
In fact, while the vast majority of older people say, when surveyed, that they want to stay in whatever home they live in now, that may prove difficult at best. Consider the major threat to successful independent living, impaired mobility. Only 3.5 percent of homes today offer single floor living with no steps to the entrance. Many do not have hallways that are wide enough to comfortably accommodate assistive devices. Retrofitting a two-story home with a curving staircase—and, let’s say, no first-floor bathroom or bedroom—may be prohibitively expensive or impossible altogether. Then there’s transportation from the older person’s home to stores, libraries, doctor’s offices, or movie theaters which, in many rural or suburban locations, is nonexistent.
What Christopher Herbert and Jennifer Molinsky advocate in their article is a variety of public policy steps to help. They mention tax credits for renovations and programs that provide coordination of care, perhaps modeled on PACE (program of all-inclusive care for the elderly), though that is currently based in adult day health centers and is more suitable for the frail than for the slightly impaired. They allude to NORCs (naturally occurring retirement communities) without mentioning them by name as a model that facilitates on-site assistance by concentrating a large group of people in one area.
But in the end, the authors are forced to make an appeal for building new accessible, multifamily buildings with elevators in walkable urban centers. And it’s not just urban planners—if cities still hire such people—who need to push for this model; it’s also older people themselves. A good place to start is to educate people as they turn seventy and older that they may want to think about the long run and move before they are forced to. They should choose a housing arrangement, if they can afford to, where they can truly age in place.

May 14, 2019

The Dignity Dilemma

            As soon as I walked into Mrs. L’s room, I knew something was wrong. She was sitting quietly in her wheelchair, her head bowed; her back was towards me, towards the door, towards the world of the nursing home which, for the past year, had been her world and where I was a volunteer. I walked over to her and greeted her, gently resting my hand on her shoulder, and saw her face was contorted into a grimace. I asked her what was the matter and she said, her voice almost inaudible, that she had to go to the bathroom.
            That seemed like an easy enough problem to solve. I went to the nurse’s station, a few steps from Mrs. L’s room, and found two nursing assistants chatting so I let them know that Mrs. L. needed help going to the bathroom. “Her roommate is in the bathroom; she has to wait,” I was told. I returned to Mrs. L’s room, gave her an update, and tried to distract her. I asked her about her plans for Mother’s Day, I commented on the trees that were flowering outside. Ten minutes passed. Fifteen minutes passed. The roommate was still in their shared bathroom. Mrs. L. began to moan softly.
            I went back to the nurse’s station. This time I found a nurse and asked her if she was in charge.  She hedged, saying she was taking care of some of the residents. As it turned out, Mrs. L. was one of “hers.” I explained the situation, indicating that Mrs. L. had been waiting at least fifteen minutes—I wasn’t sure how long she had been waiting before my arrival. “Well,” the nurse explained, “she has to wait. Her bathroom has a raised toilet seat adjusted for her, so she has to use her own bathroom.”
            No doubt a raised toilet seat is helpful. But nursing home residents do sometimes leave the nursing home. They visit their relatives and use their bathrooms. They go to restaurants and use the public bathrooms. A raised toilet seat is desirable but not essential. 
            I asked about alternatives, given that Mrs. L’s bathroom of choice was occupied. There were, after all, many other bathrooms on the same floor: there was a staff bathroom, there was a public bathroom and, if necessary, there were the other residents’ bathrooms. Mrs. L’s section of the nursing home must have had at least ten bathrooms. And her “unit” was one of four on the same floor, each of which had another ten bathrooms.
            No, the nurse explained. For “infection control” reasons, Mrs. L could not use any of those other 39 bathrooms.
            I was incredulous. Mrs. L. was some sort of Typhoid Mary? A danger to the public health? 
            There are, to be sure, situations in which hospital patients or nursing home residents harbor highly infectious agents and are on “contact precautions.” But Mrs. L. had no such infection. She was not subject to such measures.
            I tried one last time. Surely, I indicated, there must be some sort of backup plan if the desired bathroom was unavailable. No, I was informed. The nursing home had no backup plan. Mrs. L. would have to wait.
            Really? How long a wait was acceptable? Half an hour? An hour? What if the plumbing was out of order? 
            I waited with Mrs. L. After twenty-five minutes (plus whatever time she had waited before my arrival), the roommate emerged from the bathroom. I informed the nursing assistants, who were still sitting at the nurse’s station, that the bathroom was now available, and Mrs. L. was taken to the bathroom. 
            To Mrs. L., this treatment felt like punishment. It felt like an arbitrary exercise of control by the powerful over the powerless. To me, it sounded like adherence to rules intended to promote the health and safety of the residents but designed for the convenience of staff, rules that were enforced without creativity, flexibility, or compassion.
            Treating frail, vulnerable older nursing home residents with dignity is not a new challenge Since Mary Mendelson wrote the muckraking “Tender Loving Greed” in 1974 and Robert Butler received a Pulitzer Prize for “Why Survive? Being Old in America,” published in 1976, nursing homes have been criticized for failing to treat residents with dignity and respect. But we have come a long way since the 1970s. The Nursing Home Reform Act (OBRA ’87) promulgated a “Bill of Rights” for nursing home residents that guaranteed the right to privacy and to being treated with dignity. Dr. Bill Thomas, a geriatric physician, introduced the Eden Alternative in 1991: he brought plants and pets into nursing homes to convert them from sterile, cold, institutions to something more closely resembling a home. A few years later, a consortium of nursing homes  calling itself the Pioneer Network was established to transform nursing homes through “culture change.” Their goal, as the network’s website puts it, is to help “care providers to transition away from a medical, institutional model of elder care to one that is life affirming, satisfying, humane and meaningful.” It goes on to say that the “Pioneer Network advocates for a culture of aging in which individual voices are heard and individual choices are respected.”

            Implementing this model is not easy and some of the early ideas about how to go about transforming care were problematic. One idea, for example, was the “universal worker.” In a person’s home, responsibilities for caretaking are often shared by family members. Everyone can bring Mom a magazine or get her a cup of tea or escort her to the bathroom: there is no clearly demarcated division of labor. The hope was that replicating this model in the nursing home would allow greater flexibility—and shorter waits for residents—but nursing homes aren’t homes and a division of labor is often necessary because not all employees have the same skills. Translating the model into practice is especially challenging when residents have cognitive impairment and cannot make autonomous choices. 
            Nursing homes also face organizational challenges and regulatory challenges. I understand that. The Centers for Medicare and Medicaid Services, which dictates the terms of the state surveys that assess quality of care in nursing homes, also understands that it’s not easy to address quality of life as well as safety. But the resident interviews that are now a mandated part of quality assessment include questions about dignity and respect.

            Mahatma Ghandi is widely quoted as saying that “a nation’s greatness is measured by how it treats its weakest members.” I would elaborate on this to say that a nursing home’s quality is measured by whether it treats its most dependent, vulnerable residents with respect and dignity. By this standard, many nursing homes today, including some that pride themselves on their care, have a long way to go. They would do well to consult some of the training guides assembled by the Pioneer Network and to follow the model of British nursing homes, that have launched campaigns to systematically promote dignity--including bathroom use--in nursing homes.

April 21, 2019

Caregivers are the Key

“Low levels of caregiver training are a missed opportunity for the health care system,” comments a research letter in JAMA Internal Medicine this week. Its authors continue: “Prior work suggests that training to better prepare family caregivers may improve health and reduce service utilization for those they assist.” In an age when health policy mavens are eager to find ways to decrease the enormous health care expenditures of “high-need” patients (also called “high-need, high-cost” patients), the potential contribution of caregivers has been sadly neglected.
The new study analyzes patient/caregiver pairs using data from the National Health and Aging Trends Study and the companion National Survey of Caregivers. Examining 1861 family caregivers of older individuals who live in the community and receive help in daily activities because of their health problems, the study confirms the paucity of relevant education in this group: only 7.3 percent of the unpaid caregivers reported receiving any training whatsoever. Put differently, 92.7 percent of family caregivers manage multiple medications, provide wound care, help with mobility and, in many cases, monitor specialized medical equipment entirely on their own. Is it so surprising that the older adults they care for have high rates of hospitalization? Their “carees,” the people they care for, typically suffer from multiple chronic diseases. If they knew how to manage acute exacerbations of those conditions—a flare of chronic obstructive pulmonary disease, for example, or a worsening of congestive heart failure; if they were equipped to deal with a predictable complication of those illnesses, such as a marked elevation of blood sugar in diabetes or the development of bronchitis in emphysema, then at least some of those hospitalizations might well be preventable. But the health care system does not routinely involve family caregivers in the ongoing treatment of frail, older adults. Only when their patients face a crisis such as the urgent need for dialysis or surgery or ICU care will physicians consult with caregivers. 
Shockingly, the new study found no association between the health status of the older adult and the degree of training of his or her caregiver. The degree of impairment, the extent of caregiver involvement, or the amount of caregiver burden, had no discernible effect on the level of support provided by the health care system. 
Also noteworthy are the age and sex of the caregivers: among the 1230 caregivers who themselves were older, two-thirds were women and their mean age was 81.8. I suspect the age distribution of caregivers shows two peaks: one composed of the adult children of the frail elders, the other made up of their spouses. 
We have to do better. We are investing energy in redesigning the health care system so as to provide better care for individuals with complex needs, focusing on the professionals who function within the system and the finances that underlie it.  Surely we could devote a little effort to the unpaid caregivers who are central to its effectiveness. A small step in this direction will be the publication of my book for caregivers, “The Caregiver’s Encyclopedia: A Compassionate Guide to Caring for Older Adults.” Look for it in late fall!

April 14, 2019

The Lifeboat is Full

Every so often I use this blog to discuss public policy issues that are of interest to older people--but not only to older people. Immigration is one of those. I have argued before that we  need immigration to address the manpower needs of an aging population: at the very least, we need immigration to recruit home health aides to help care for frail older people. It turns out that immigration is also a geriatric issue because a small but not inconsequential fraction of the immigrants are over 60--which in the countries they come from, is the beginning of old age.

So when the US president recently stated he wanted to seal the border from asylum seekers because “we don’t have room,” he failed to understand that we do need immigrants. The president also demonstrated that he failed to understand the historical basis for current asylum law when he went on to say, “I don’t think anyone has ever expressed it like that… but when it’s full, it’s full.” 

Actually, these words are almost identical to the ones of Swiss federal councillor, Eduard von Steiger, in the summer of 1942 after Switzerland sealed its borders to prevent Jewish refugees from reaching safety. “The lifeboat is full,” he announced as the pace of European deportations to concentration camps accelerated, resulting in a fate well-known to Swiss authorities. In response to popular protest, the restrictions were weakened for a time, only to be re-instituted in December, 1942. While individual Swiss citizens continued to defy the rules, at least 20,000 Jews who managed to make their way to Switzerland in the increasingly perilous world of post-August, 1942 were turned away. Their fate was almost certain death.

It was because of this ignominious closing of the border to refugees during World War 2 that the Geneva Convention Relating to the Status of Refugees asserted that no “state shall expel or return a refugee in any manner whatever to the frontiers of territory where his life or freedom would be threatened on account of his race, religion, nationality, membership of a particular social group or political opinion.” The entire Geneva Convention spelling out the rights of refugees is a reaction against the various policies of the Swiss government towards Jews during World War II--rights such as the right to work and to go to school in the host country. The US signed the amended protocol to the Convention in 1967, a protocol that extended these rights to all refugees, in all times and places.

Allowing migrants to make their case for asylum is a fundamental ethical principle. It's important to remember that those would-be immigrants include children, parents--and grandparents. It's also worth remembering that the right to seek asylum is grounded in international law. And by the way,  it's also good for today's older Americans.

March 24, 2019

Can We Talk?

This week revealed the long-awaited results of a trial of the “Serious Illness Program,” the meticulously designed and carefully studied project of researchers in palliative care at Dana Farber Cancer Institute and at the Boston think tank, Ariadne Labs. Initially conceived of as a “checklist” by checklist enthusiast and founding director of Ariadne, Atul Gawande, the program has evolved into an educational program for clinicians. Specifically, it involves teaching physicians to use the “Serious Illness Conversation Guide” to structure discussions with patients about end of life preferences and values. In this study, carried out at 41 “clusters” comprised of 91 physicians, nurse practitioners, and physician assistants working within the Dana Farber orbit, palliative care physicians did the teaching and provided follow up coaching. Ultimately, only 35 clusters providing care to 209 eligible patients had evaluable data. What the results showed is that despite all the effort spread over a four-year period, the Serious Illness Conversation Guide failed to achieve any of its primary outcomes.
The researchers hypothesized that if physicians were trained to use the researchers’ communications tool, patients would be more likely to have “goal-concordant care;” that is, the treatment they received would be aligned with their wishes. In addition, it was hoped, they would be more likely to experience a peaceful end of life. Neither effect was observed. There was less anxiety and depression among patients whose physicians had been trained to use the Serious Illness Conversation Guide, though perhaps a less-labor intensive or qualitatively different approach would have achieved the same effect.
What should we conclude from the failure of this communications guide to achieve its goals? The authors blame it on the small sample size and low patient accrual rate. They point out that their conclusions are of limited generalizability, given that the patient population was predominantly white, affluent, and college-educated. The more fundamental question, however, is whether the intervention itself is valuable. Despite its being well-received by physicians, perhaps the tool is just not an effective approach to educating physicians in communication skills. 
An even deeper assumption of this study is that the major problem with end of life care is poor communication by physicians. A very different perspective formed the basis of the Robert Wood Johnson’s program, Promoting Excellence at the End of Life, which focused principally on educating and empowering patients. This program, despite an enormous financial commitment and extensive evaluation, also failed, as evidenced by the 1995 SUPPORT study, “The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.” The reality, I suspect, is that we need to simultaneously affect both physicians and patients if end of life care is to change. 
One more possibility to consider is that despite what patients say when given theoretical options such as "would you rather die at home or in the hospital?" or "when you are at the end of life, would you prefer comfort care?" in fact, when faced with the reality of a life-limiting illness, patients want all possible efforts at life-prolongation, whatever the personal cost, and they expect their physicians to provide them. Maybe they don't want to discuss options with their physicians. The language of obituaries, "he passed away after a long battle" or after a "heroic struggle" very likely reflects contemporary culture. We need to study what patients want when they are faced with an actual illness, not with an abstract possibility.

March 17, 2019

What Does Dying Have to Do With It?

What Katy Butler gets spectacularly right in her new book, The Art of Dying Well, is that if we want life's last chapter to be a good one, there’s a great deal more to talk about than death and dying. She understands, which so many writers about aging do not, that maintaining function—the ability to walk, to see, to hear, and a host of other verbs describing the actions that are critical for a fulfilling life—is of paramount importance in this phase of life. She understands that medical tests, procedures, and treatments often do more harm than good and this danger becomes greater as the number of underlying medical problems grows, which happens more and more often with advancing age. So why, then, does she call her book the “art of dying well?”

At first, I speculated that the title had been chosen by the publisher’s marketing division, as often happens, chosen perhaps because books about dying are in vogue, or at least more so than are books about frailty or chronic disease. Then I wondered whether the problem was merely semantic—after all, the formative experience that awakened Butler to the issue of “dying well” was that of her father, which she poignantly describes in her previous book, “Knocking on Heaven’s Door.” Her father had a stroke, only to spend the next seven or so years declining, his life prolonged by medical technology such as a pacemaker. From his daughter’s point of view, that entire period of decline could be viewed as “dying,” even though it was measured in years, not days or months. But Butler says that her goal in her new book is to provide readers with “a step-by-step guide to remaining as healthy and happy as possible, and as medically and unafraid, through the predictable health stages of late life, from vigorous old age to final breath.” Although I would argue with the implication that everyone goes through “predictable health stages”—some people plunge headlong into frailty, for example, whereas others move towards it gradually and others go directly from being robust to dying with virtually no time between the two—she does acknowledge that there’s more to old age than dying. In the very next breath, however, she says that “the goal of each chapter is to help you thrive and keep you on a path to a good end of life.” In other words, a major part of the point is to act today to assure a good death tomorrow. I would emphasize optimizing each day, rather than assuming that the purpose of your behavior today is to prevent a bad death.
The same phenomenon of grasping what old age is all about but not quite getting it is evident in Butler’s misconception about the “goals of care.” In Chapter 4, “Awareness of Mortality,” she asserts that discussing the goals of care is “medical shorthand for exploring what matters most to you [yes!], and how medicine can help you accomplish it [yes!], when time is short and cure is not in the cards [no!]” I think that patients and their physicians need to clarify the goals of care at every stage of life, not just when the end is near. It’s true that most people who are vigorous and are not afflicted with a fatal illness will choose life-prolongation as their main goal. But it is also true that many people who suffer from multiple chronic conditions but who do not have a terminal diagnosis and who can anticipate another ten years of life may choose as their principal goal of care “maximizing function.” Butler is right that for some physicians, discussing the goals of care is a euphemism for moving from treatment that seeks to cure to treatment that seeks to comfort--but goals of care discussions ought to be far more than that.
Then there's Butler's curious discussion of why you should cultivate a network of friendships in old age and find ways to remain engaged with life. Both are decidedly beneficial, as Butler asserts, but not just because they will prove useful “later on.” Relationships and engagement are ways to find meaning in life after the children have grown up and moved away and after retirement. This is yet another instance of the author seeming to understand what’s important as people age but then backsliding into thinking it’s important only as a means to assuring a good death. Befriending your neighbor can be rewarding in and of itself, not just so she will buy groceries for you when you are too ill to do so yourself.
Butler does an admirable job of conveying some of the main insights of geriatrics and palliative care. She understands, for instance, that the hospital is often a perilous environment for an older person, leading to loss of some of the functions most critical to remaining independent. She recognizes that physicians often focus on the benefits of medical technology, whether an implanted cardiac defibrillator (ICD) or an artificial heart valve, and fail to consider their risks. She rightly identifies home care programs, advance care planning, and enrollment in hospice as potentially life-enhancing strategies. But then she makes statements about medicine that are at best misleading and at worst simply wrong. For example, she says that “Benadryl and the sleeping pills are…anticholinergics, an insidious group of commonly prescribed drugs that befuddle thinking and substantially increase the likelihood of developing dementia.” Yes, anticholinergics can result in delirium, a form of acute, reversible confusion. But dementia? 
Butler goes on, a few pages later, to report on a “landmark study” that found that people who used anticholinergics heavily were 50 percent more likely than those who took few to develop dementia. What she doesn’t say is that it’s very misleading to cite relative risk rather than absolute risk: going from a risk of 1 in a 100 to a risk of 1.5 in a 100 constitutes a 50 percent increase in risk, but the outcome in question remains very rare. She doesn’t say that this study lumped many different medications with anticholinergic activity together, including a variety of drugs that are no longer in widespread use, such as the tricyclic antidepressants. She also does not mention that drugs that block acid production (the proton pump inhibitors such as Prilosec and Prevacid) have also been associated, statistically, with developing dementia, and so have anti-anxiety agents. Is it really the case that all these drugs “cause” dementia? Or might it be that people who take certain kinds of drugs—perhaps because they are already exhibiting the earliest signs of dementia—are more likely to go on and develop the full-blown disease? Before jumping to conclusions, observational studies of the kind Butler cites (as opposed to a randomized controlled trial) need to be replicated or, ideally, followed up with a study in which some people are given anticholinergics for a given condition and others, chosen at random, are given something else. 
To be fair, the author of the “landmark study” has gone on to carry out many other observational studies. Her most recent report on this subject appeared in the British Medical Journal last year partially confirmed her earlier findings. But expert analysis of this paper is mixed. At best, it is reasonable to conclude that anticholinergic medications might be a risk factor for dementia.
The Art of Dying Well has much to offer. I only wish it had been more scrupulously reviewed by geriatricians before publication.

March 12, 2019

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.

March 04, 2019


I haven’t written a blog post in a while. Not because I’ve been ill or travelling, but simply because I couldn’t find anything I was interested in writing about. Now, at last, I came upon some appropriate material. Next week I hope to blog about Katy Butler’s new book, The Art of Dying Well. This week I want to say a bit about the “2019 American Geriatrics Society Beers Criteria for Potentially Inappropriate Medication Use in Older Adults.” 
The Beers criteria were first promulgated in 1991 by Mark Beers and published in the Archives of Internal Medicine. The idea of reviewing the literature on adverse drug reactions in the elderly and publicizing a list of the worst offenders was widely applauded—but the methodology used in the original list was severely criticized. The American Geriatrics Society subsequently adopted the project and has been responsible for recent revisions. The newest list was just issued.
As with earlier AGS revisions, the expert panel charged with evaluating medications used evidence-based criteria for its judgments. For every medication about which it makes a recommendation, it indicates the quality of the evidence and the strength of the recommendation. Moreover, the panel distinguishes among three groups of potentially inappropriate medications: 1) those that should be avoided by older people in general, either because of a high risk of adverse effects, limited effectiveness, or the availability of better alternatives; 2) those that should be avoided by people with certain medical conditions (for example, renal failure); and 3) those in which the risks generally outweigh the benefits but which may be useful for particular individuals.
Physicians should keep all the tables on hand as a reference; because the medications are sorted by therapeutic category, i.e. “anti-infective” or “cardiovascular” and only generic names are used, the list is less useful for patients and families. I am going to summarize some of the main points for the general reader.
One group of medications that the AGS strongly recommends avoiding (although interestingly, the quality of the evidence is rated as “moderate”) are the first- generation antihistamines, drugs such as diphenhydramine (benadryl) and hydroxyzine (atarax) that are used against allergies and itching. They cause dry mouth, constipation, and confusion. To a large extent they have been replaced by the second-generation antihistamines (fexofenadine or Allegra, loratadine or Claritin, and cetirizine or Zyrtec) and their isomers, sometimes called third- generation antihistamines (levocetirizine or Xyzal). 
A number of first-generation antidepressants are similarly to be avoided because they, like the antihistamines, are anticholinergic (amitriptyline or Elavil, imipramine or Tofranil, and desipramine or Norpramin)—though in this case the quality of the evidence is high. These drugs have largely been superseded by newer antidepressants such as the selective serotonin reuptake inhibitors (SSRIs including fluoxetine or Prozac, citalopram or Celexa, and sertraline or Zoloft) and serotonin and norepinephrine reuptake inhibitors (SNRIs such as duloxetine or Cymbalta and venlaxafine or Effexor). It’s important to note that all these drugs can cause confusion; a few highly publicized studies notwithstanding, the AGS does not claim that any of these medications actually cause dementia. It’s also worth commenting that while all the antihistamines are available over the counter, so older patients might mistakenly choose one of the first-generation drugs over less toxic agents, the antidepressants are all prescription drugs and the first-generation agents are very seldom prescribed by physicians.
A second group of medications that AGS singles out are the antipsychotics, both the first-generation variety (drugs such as haloperidol or Haldol and fluphenazine or Prolixin) and second-generation agents (olanzapine or Zyprexa, quetiapine or Seroquil, and risperidone or Risperdal). All these drugs are deemed risky and are to be avoided except in people with schizophrenia or in people with dementia who are exhibiting dangerous behavior that has failed to respond to other alternatives. This is important because physicians continue to prescribe antipsychotics for the behavioral manifestations of dementia, despite compelling evidence that they are ineffective and/or risky.
Finally, both the benzodiazepines (used to treat anxiety or sleep disorders) and non-steroidal anti-inflammatory pain medications (drugs such as ibuprofen or Motrin and naproxen or Naprosyn but not celecoxib or Celebrex) receive an “avoid” recommendation, though in both cases the quality of the evidence is moderate but the recommendation is deemed strong. This is noteworthy because both groups of medicines continue to be prescribed by physicians and many of the second group are available over-the-counter.
The newest iteration of the Beers list is not perfect. But at the very least, there should be an awfully good reason for an older person to take any of the drugs the AGS says to avoid.