July 23, 2019

Home Sweet Nursing Home

Every year, about one-quarter of the 1.4 million American nursing home residents are hospitalized. Most of them survive the experience and go back to the same nursing home from whence they came. But like their community-dwelling counterparts, they often suffer from one or more adverse events after discharge, despite the documentation that is supposed to travel with them from the hospital to the nursing home, and despite the nursing staff that cares for them on their return and the physicians who attend to them shortly after their arrival. How often do they experience such adverse events? How serious are they? And can they be prevented? A new study in JAMA Internal Medicine attempts to provide the answers.

To analyze what happens when nursing home residents travel from the hospital back to their nursing home of origin, the authors of the study sampled 32 nursing homes from the 762-member New England Nursing Home Quality Collaborative. They identified all residents who made the nursing home-to-hospital-and back-journey over a nearly two-year period ending on December 31, 2017. They hired and trained nurse reviewers to study the records of these patients and, after further physician review, came up with 379 adverse events.

Classifying these episodes on a four-part scale ranging from not serious to fatal, they found that fully 38 percent were serious, another 7 percent were life-threatening, and 2 percent proved fatal. In terms of the type of episode, over half (52 percent) were related to “resident care,” i.e. involved a pressure ulcer, skin tear, or fall. The biggest chunk were due to heath care acquired infections (29 percent), with medication-related episodes accounting for 17 percent. In the judgment of the physician reviewers, fully 70 percent were either preventable or ameliorable.

What’s going on here? Why did so many long-term care residents suffer an adverse event after hospitalization? Clearly, this is a very vulnerable population. The patients tend to be very old and very frail, otherwise they wouldn’t live in a nursing home. That means they are particularly susceptible to common health care acquired infections such as c. difficile. Often weak before their hospitalization, they are typically weaker—and at greater risk of falling and of skin tears—after being ill, with associated immobility and poor nutrition. Is there a fix? Are many of these events truly preventable or at least ameliorable?

Most likely, improving this sad situation will require additional effort by both hospital and nursing home personnel. At the hospital level, early mobilization is essential, as is adequate attention to nutrition. Avoiding high risk medications, whether those predisposing to c diff or those apt to trigger delirium, is of utmost importance. At the nursing home level, assuming that whatever-worked-before-will-work again is probably the major impediment to change. Simply re-instituting the previous regimen—the same diet and the same degree of independent ambulation—or mindlessly accepting the new medication list sent over from the hospital predisposes to problems. 

As is so common in geriatrics, we may know what to do but don't make the effort to do it. To incentivize the relevant staff to do what’s necessary, we may need to design a system in which facilities are paid extra to go the extra mile. Maybe nursing homes that take their residents back from the hospital without an intervening skilled nursing facility (“rehab”) stay should be paid extra for the days they should be functioning more like a short stay SNF. Maybe Medicare payments to hospitals should be adjusted to account for frailty, with hospitals whose nursing home patients do well after discharge getting a bonus for outstanding care. Perhaps hospitals and nursing homes need to take shared responsibility for the welfare of long-term care residents, using a shared electronic medical record system, “warm” hand-offs, and even shared staff. If we really want to improve a manifestly improvable system, maybe we should do all the above.

July 01, 2019

The Dirt on Drugs

Several months ago, in writing about Katy Butler’s generally admirable new book, The Art of Dying Well,I questioned her uncritical acceptance of claims that certain drugs, the anticholinergics, caused dementia. That drugs such as antihistamines and some antidepressants cause delirium, or acute confusion, is well-established. But dementia? A large, well-conceived study just published in JAMA Internal Medicine provides additional evidence that they may well result in dementia. Previous studies were tainted because they tended to be small, observational studies that lumped many different anticholinergic drugs together, some of which are known to be far more potent than others. So how does the new study fare by comparison?
The recent analysis is still an observational study—it is impossible to randomize patients into those who receive anticholinergics and those who do not and then follow them for years—but it is very large, it analyzes different classes of anticholinergics separately, and it focuses on the cumulative anticholinergic exposure over a period of many years. While not perfect, it is probably the best we are going to get and it provides strong, although not definitive, evidence that anticholinergics are a risk factor for dementia.
This “nested case control study” allowed the authors to identify just under 59,000 people over age 55 with dementia from a British data base of 30 million. For each case, they found 5 controls matched along four discrete dimensions. The main variable of interest was the total, cumulative anticholinergic exposure which they calculated according to a well-established protocol that allows standardization across drugs with different dosage regimens. The authors also decided in advance to study the association between the total standardized daily dose (TSDD) for each type of anticholinergic: antihistamines, antidepressants, antipsychotics, antiparkinsonian drugs were considered both separately and collectively. Finally, the study repeated the analysis for patients diagnosed with Alzheimer’s disease, those diagnosed with vascular dementia, and those with some other form of dementia. So what did they find?
The main finding was that the adjusted odds ratio associated with low anticholinergic exposure was 1.06, while the ratio associated with the highest degree of anticholinergic exposure was 1.49, a highly significant difference. Also interesting was the observation that only certain groups of anticholinergics increased the risk of developing dementia. In particular, antidepressants, antipsychotics, antiepileptics, and drugs used to treat Parkinson’s and incontinence were the main offenders (and antihistamines, which geriatric physicians inveigh against as potential causes of delirium, had no effect). Curiously, the effects were more dramatic in patients with vascular dementia than in those with Alzheimer’s disease, a novel finding. Finally, the strongest association was found in people diagnosed before age 80.
As the authors are quick to point out, associations do not demonstrate causality. They can’t. Researchers simply cannot exclude the possibility that some of the drug use in fact reflected early, preclinical effects of as yet undiagnosed dementia. For example, many people with dementia are depressed; it is entirely possible that the depression manifests itself before a formal diagnosis is made, at a time when patients are beginning to detect subtle but disturbing changes in their memory and problem-solving ability. But if anticholinergics are causative, then they may well be responsible for as much as 10 percent of all dementia. The evidence is sufficiently suggestive and the magnitude of the danger sufficiently great that it’s time to be very wary of these drugs, especially in people under age 80. 

June 25, 2019

Elderhood

I particularly like the title of geriatrician Louise Aronson’s new book, Elderhood. I appreciate that she does not shy away from calling old people “old.” She cringes at euphemisms like “seniors” and seems to find "older adults," the formulation that the American Geriatrics Society deems politically correct, a bit affected (or so I infer from her conspicuous failure to use the phrase). Dr. Aronson also declines to talk about “successful aging” (a phrase that suggests that anyone who isn’t aging successfully is a failure) and scoffs at the term currently in vogue, “flourishing.” Not that she thinks old people can’t flourish, but after 30 years of practicing medicine she’s a realist. That means accepting that aging comes with a good deal of loss and deterioration. The challenge is not to halt that process—though prevention, when feasible, is a good thing—but rather to find ways to enable older people to derive meaning and satisfaction from their lives despite those losses. Old age is simply a phase of life with its unique challenges and opportunities, like childhood or adulthood. Hence, elderhood.
The book is a wonderfully readable and accessible introduction to geriatric medicine. Through clinical anecdotes and accompanying commentary, Aronson teaches the reader all the basics: she discusses falls, polypharmacy, delirium, dementia, and depression. She also touches on the perils and potentials of the institutions where today’s old people receive medical services such as hospitals, rehab facilities and the office, with special attention to the merits of house calls. And she discusses the backdrop against which all this medical care takes place—the ageism of the surrounding society, the misconceived (or so she argues), expensive, and distracting effort to extend the lifespan, and the poor design of the environments in which most old people live.
The organization of “Elderhood” is somewhat opaque. It is divided into sections: birth, childhood, adulthood, elderhood, and death, which seem to reflect the author’s early life, adulthood, and incipient elderhood. But the structure breaks down because the sections on elderhood and death clearly refer to the author’s patients and not to herself, though she reflects on how she experiences their life stories. After a while I gave up trying to make sense of the book’s structure and just followed the author wherever she led me, from one story to the next, with thoughtful meditations on each vignette. It’s a wonderful ride.
No single volume can possibly capture all aspects of aging. If there’s one thing missing from this rich and satisfying book, it’s a deeper understanding of the forces that both create and sustain the maladaptive system Aronson so eloquently describes. She is well aware of the social dimension of her tale and in fact explains early on that she had been “an unlikely medical student,” regularly substituting literature, psychology, and anthropology college courses for math and science courses whenever she could. She spends a good deal of time talking about medications but not so much on the pharmaceutical industry; likewise, she discusses the baleful effects of hospitals on the physical functioning of old patients but not on prospective payment or the device manufacturing industry that led to the the prevailing system. One consequence of this omission is that Aronson cannot quite succeed in fulfilling the ambitious mission of her subtitle, “redefining aging, transforming medicine, reimagining life.” She hasn't yet come up with ways to change the powerful institutions that shape contemporary reality--maybe in her next book. 
But that’s all right. The book is a treasure. Perhaps its most fundamental lesson is that what matters most in medicine is the relationship between patients and physicians. And through her engaging style, her allusions to her personal life (hence, presumably, the birth-childhood-adulthood-elderhood-death structure of the book), and her emotional reaction to what she observed in her patients, we come to know and respect Louise Aronson. We trust her. The secret to the care of the patient, George Peabody famously said and Aronson quotes, is caring for the patient. Maybe the secret to improving geriatric care is designing an educational system that will produce more physicians like Louise Aronson.

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.