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.

January 22, 2019

Gray is In

This past week, the Wall Street Journal ran an article titled, “The Hottest Hair Color of the Moment is…Gray.” Granted, it was in the “style and fashion” section (who knew there was such a thing?). Presumably, the WSJ was interested primarily because the market for hair dye is enormous. What is the significance of this trend? 
The article raises the possibility that the development represents a changing view of beauty, and perhaps even more fundamentally, a changing view of aging. Change in societal attitudes towards aging would be most welcome—and with the proportion of the American population that is over 65 now 15 percent, and expected to rise to 24 percent by 2060, overdue.
It would not be the first time that attitudes underwent a profound shift. In colonial America, historians David Hackett Fischer (Growing Old in America, NY: Oxford University Press, 1978) and W.A. Achenbaum ("Old Age in the New Land," Baltimore: Johns Hopkins University Press, 1980) both argue, most older people received “deference and respect [although] little love or affection.” This attitude reflected the Calvinist tradition, which venerated old age as “proof” of God’s favor. In New England, the choicest seats in the meeting house were accorded the oldest members—not those who made the largest donation. Distinguished statesmen wore white wigs as a mark of sagacity. 
George Washington on his horse
But the view changed by the post-Civil War period: Fischer says the transition to a youth-biased culture occurred between 1770 and 1820; Achenbaum places it in the 1860s, but somewhere during that time, old people fell out of favor. Arguably, things got worse in the twentieth century, with social security resulting in resentment towards older people.
But whether it was a social revolution (the rise of egalitarianism after the French Revolution) or the industrial revolution (the decline of agrarian paternalism and the demise of primogeniture that had kept the young under their father’s yoke) that triggered the shift, there is no doubt there was a shift. Today, by contrast, the major change is demographic (in 1700, an estimated 20 percent of the population could expect to live to age 70; today, 80 percent can) and medical (today, many older people remain vigorous for many of their post-retirement years). The social reality is that older people in the workforce limit the possibilities of the young—the most egregious example is the university tenure system, which can literally fossilize an entire department. And while physical function often remains good as Americans age, the scourge of dementia remains, especially among the oldest old, or those over age 80.
It’s hard to be sure what the interest in gray or silver hair dye signifies. My suspicion is that gray is just another color on the palette and thus represents a new market opportunity. Just as the past few years have brought us pink hair and purple hair, orange hair and blue hair, so now we are adding shades of gray to the list of options. There is no evidence presented in the article that a larger number of older people are opting to stay gray—evidently, they continue to dye their hair blond at the same time that younger people choose gray. 
At the heart of the issue is whether people are willing to accept themselves, and others, as they are. As long as older people opt in large numbers to dye their hair, we can be pretty sure that attitudes towards aging remain unchanged.

January 03, 2019

Who Cares?

As an ever-growing percentage of Americans live to extreme old age, with a correspondingly large proportion surviving long enough to become frail, family caregivers play an increasingly pivotal role in their care. Previous studies have documented how widespread caregiving is, how intense, and how medically oriented. But these studies typically are snapshots, looking at a single point in time. A new study, “Family Caregivers of Older Adults, 1999-2015,” uses several national surveys to examine changes in caregiving over time.
The take home message of this comparison is that the job of caregiving has become more challenging as the care recipients have become sicker and more disabled. In 1999, 18 percent of care recipients needed help in three or four areas. By 2015, this had risen to 26 percent. Caregiving has become more intense and of longer duration, with 45 percent of caregivers providing help for over four years in 1999, compared to 64 percent in 2015. 
What this means is that for caregivers to do a good job, they need to be more medically sophisticated today. In the groundbreaking 2012 study, “Home Alone: Family Caregivers Providing Complex Chronic Care,” 46 percent of family caregivers were found to provide one or more types of fairly sophisticated medical care. This percentage has undoubtedly grown over time, just as all the other indicators of complexity have grown. But there is no reason to believe that today’s caregivers are any better equipped than their predecessors to manage chronic disease.

The consequences of this shift are profoundly under-appreciated. Increased demands on caregivers result in emotional, cognitive, and financial stress. At least as important, and almost never addressed, are the consequences to the care recipients. Unless their family caregivers develop greater medical knowledge and unless they learn to navigate the maze that is our current health care system, they will pay the price in the form of more trips to the emergency room, more hospital admissions, more tests, and more procedures. 
If today’s frail older people wish to avoid burdensome and often unnecessary and even ineffective medical treatment, and if our society wants to avoid the financial cost of such treatment, then it behooves us to provide better support for caregivers. Caregivers are the key. In the next few months, I will take a small step in that direction with the publication of my book for caregivers, tentatively titled “Taking Care.” This book, to be published by Johns Hopkins University Press, will provide caregivers with the knowledge they need as their relatives make their way to the office, the hospital, the skilled nursing facility. It will teach them enough medicine to help them manage the acute symptoms and chronic diseases they are likely to encounter. Above all, it will help them think through decisions based on their family member’s underlying health state and preferences for care. Stay tuned!

December 17, 2018

Insuring You Have Insurance

It was really outrageous. It sheds light on our crazy health insurance system—and it is a warning to anyone considering going without health insurance or who thinks mandatory insurance is unnecessary. Here’s what happened:

A family member recently received an “explanation of benefits” from his insurer. He had had had a CT scan for which the hospital performing the test charged $1717. Leave aside for a moment that this is a preposterous fee. He was billed $237.21. Why the difference? The difference was due to the “discount” he received because his insurer had negotiated a rate with the hospital that was 14% of the rate the hospital wanted to charge. The insurer didn’t actually pay a cent—my relative has a “high deductible plan” and has to pay all medical fees until he his family has spent $5000 in a given year. But because he has insurance, he had to pay $237, not $1717. Put differently, if my relative didn’t have health insurance, he would have been charged the full $1717 for exactly the same test.

The system is a bit like scalpers charging extraordinarily high rates for tickets to popular shows or sports events. As long as the system of multiple private insurers is in place, where each insurer negotiates its own deals with “providers,” it’s terribly important to have insurance. If you don’t, you’ll be scalped.

With the Affordable Care Act once again under siege, it is critical to remind everyone why having health insurance matters. This is important for the over-65 population even though virtually everyone over 65 qualifies for health insurance in the form of Medicare. It’s important to older people because their caregivers tend to be under 65: if they get sick and don’t seek treatment because they lack insurance, they won’t be able to serve as caregivers. And it’s important because if those who are not quite old enough for Medicare don’t have private insurance, they may opt to defer taking care of medical problems until they reach 65. This then puts a significant strain on Medicare when they do enroll, potentially raising the cost of the program and putting it in jeopardy.

Mandating that everyone have health insurance makes sense because insurance is only viable if low-risk individuals subscribe along with those at high risk. If sick people are the only ones who buy health insurance, it will become inordinately expensive. Imagine, for example, that nobody bought car insurance until after they had a car accident—and then they expected the insurance to kick in immediately. Then the only people paying a premium would be those who filed claims. The insurance company would have to charge rates that were high enough to make good on all the claims—which means you would probably end up paying the same amount for your policy as you would have paid to fix your car—or to cover the costs of medical care for anyone injured—after an accident.  In the case of health and disease, insurers can get around this problem by deciding that if people wait until they get sick to buy insurance, they won’t be covered for precisely the condition that led to their deciding to insure!

Just keep in mind, that in addition to all these reasons for everyone having health insurance, there’s one more. As long as we have a system of private insurers that negotiate rates with health care “providers” (hospitals, physician groups, etc.), you will pay much less for medical care if you have insurance than if you don’t, even if your insurer pays nothing at all. If this seems absurd, it is, but that is how the system works.

Now, there are other ways to address this problem other than exhorting or requiring everyone to purchase health insurance. We could give everyone health insurance—as is done with Medicare Part A for people over 65—and use tax revenues to pay for the policy.  Medicare sets rates (as long as it has a monopoly, it doesn’t have to negotiate with each provider individually) and in many states, providers are required to “accept assignment.” That means your doctor cannot turn around and bill you the difference between what they charge and what Medicare pays them. But in the current world, you go without health insurance at your own peril.

December 02, 2018

How We Die

The data are out: in 2017, the opioid epidemic took even more American lives than in any previous year: a record 72,000 people died of an opioid overdose. As we struggle to figure out how to deal with this problem, it seems more important than ever to remember that opioids--morphine and its cousins--when used appropriately, can also be life giving. This is particularly true near the end of life, and one setting where people often receive such opioids is hospice care. Why are opioids beneficial in this setting and how can abuse be avoided?

For starters, we need to recognize that not everyone who is in the last phase of life needs opioids. Patients enrolled in hospice, for example, who typically have a prognosis of six months or less (the commonly used eligibility criterion) have a wide variety of diagnoses.  Of the 1.43 million Medicare patients enrolled in hospice in 2016 (only 5% of hospice patients are under age 65), 27% had cancer as their principal diagnosis. The remainder suffered primarily from cardiac disease, dementia or any of a number of other conditions. Some of the non-cancer patients experienced pain, but many suffered chiefly from other symptoms such as nausea, confusion, or fatigue, most of which are not treated with opioids. 

Among hospice patients who do experience pain, hospice nurses, under the direction of a physician, arrange for medical treatment—and this commonly includes opioids. Opioids are also sometimes prescribed to ameliorate severe shortness of breath. This last claim sounds paradoxical—don’t opioids cause respiratory depression? In large doses or when rapidly escalating the dose they suppress respiration. Patients who are short of breath due to advanced heart or lung disease and whose underlying cause of the shortness of breath is no longer treatable often feel as though they are suffocating. They become tremendously anxious—which makes their breathing even worse. Low doses of opioids in this setting can make them less anxious, terminating this vicious cycle and providing a modicum of relief. 

Conventional wisdom in palliative care circles (palliative care is an interdisciplinary approach to advanced illness that encompasses but is not synonymous with hospice) is that with expert pain management, 90% of pain in serious illness can be well-controlled. This involves use of round the clock medication with supplementary doses for “breakthrough pain,” pain that develops before the next scheduled dose of medication. The medication is usually administered orally or via a patch on the skin; occasionally, a continuous intravenous infusion (“pump”) is needed and even more occasionally, a sophisticated method of providing pain relief will be provided by an anesthesiologist (for example, an epidural injection or a nerve block).

So perhaps quality of life can be improved in the hospice setting, but is it at the cost of shortening life?  What’s fascinating is that effective pain and other symptom management at the end of life may actually prolong life. This was demonstrated most dramatically in a widely cited study of patients with very advanced lung cancer. In this study, patients who got early palliative care alongside of traditional oncologic care had a median survival of 11.6 months compared to 8.9 months among controls who had usual care but did not receive palliative care. To put this in perspective, a differential survival of 1.7 months is substantial in the world of cancer. If a new chemotherapy drug resulted in an extra 1.7 months of life compared to conventional treatment, the new drug would get expedited approval by the FDA and be enthusiastically promoted by oncologists.

Maybe palliative care can prolong life, but palliative care does a great deal more than treat pain. Maybe the life prolongation that was found in the lung cancer patients is because their depression was treated or because they declined experimental chemotherapy that actually shortened life. What do we know about opioids themselves? Do they shorten life? This question is difficult to answer definitively because it’s not ethical to do a randomized study—taking two groups of people and assigning one group good pain management and another group inadequate pain management. We do know that among home care patients who received high or escalating doses of opioids, survival was the same as among similar home care patients who got low dose opioids. 

Perhaps opioids don’t shorten life on average, but you might think they precipitate death when used in actively dying patients. Once again, there are no good studies to address this question and there will never be any because we cannot ethically randomize dying patients to either receive doses of medicine that are adequate to relieve pain or to be left in pain. But after reviewing the available observational literature, physicians concluded that opioids prescribed in the palliative care setting for dying patients do not result in death. In fact, they argue that the “doctrine of double effect,” which is widely cited as justifying opioid-induced death by arguing the intent was pain-relief and not death, need rarely if ever be invoked.

Despite the data indicating that pain management near the end of life is tremendously beneficial and, in competent hands, is associated with minimal risk, pain in this setting continues to be under-treated. Contrary to the public perception that hospice nurses deliberately give high dose opioids to put patients out their misery, nurses tend to under-treat patients because they worry that opioids will cause harm. A recent position statement by the American Society for Pain Management Nursing and the Hospice and Palliative Nurses Association exhorts its members to “advocate for humane and dignified care, promoting ethical, effective pain and symptom management without exception.” This is not an endorsement of either physician assisted suicide (legal in 7 states and the District of Columbia under highly specific circumstances) or euthanasia (illegal throughout the US). Rather, it is a ringing endorsement of the view that high-quality pain management improves quality of life until the very end—and can decrease the demand for interventions of last resort like physician assisted suicide.

November 26, 2018

Robots to the Rescue?

Earlier this week, the New York Times featured an article entitled Meet Zora the Robot Caregiver. Zora, like her Japanese predecessors, the canine Aibo, the seal-like Paro, and the more recent humanoid Pepper, is being touted as a solution to manpower problems in geriatric caregiving. Can it work? And is it a good idea?

A friend who works in the robotics field reminded me of the potential of robotics when I wrote about the shortage of human caregivers to meet the needs of the coming wave of baby boomers entering old age. She acknowledged that today’s robots are limited in their abilities but is optimistic that when she and I may need their help—in 20 or 25 years—they may be ready. 

What exactly are robots being used for in the caregiving arena? Robots are being used for nursing home patients with dementia: they are used to calm people who are “antisocial, agitated, or sad” and asan antidote to loneliness. They provide reminders to forgetful elders to take their medications or go to the dining room for a meal. They show older people how to perform various exercises—repeatedly and with no sign of impatience. 

I have no doubt that robots are coming—this week also saw the publication of an essay in the New Yorker called Roomba Nation, which emphasizes the wide range of functions that robots can serve. Pepper, the previously alluded to  service worker in nursing homes, is also an employee of the hospitality industry. Paro (the robot seal robot) and Aibo (the robot dog) are purchased not only by nursing homes but also by facilities catering to disabled or depressed individuals. Robots clean floors in private homes and provide room service in hotels. And I have no doubt that robots can perform invaluable activities—minesweeping and disarming IEDs come to mind. 

But let’s be careful about just what tasks they replace and which functions they perform. Not that long ago, we began overhauling nursing homes so they would not serve merely as warehouses for older people, many of whom have cognitive impairment as well as physical disabilities. The practice of placing nursing home residents in wheelchairs, belting them in with restraints, and lining the chairs up in the hallway where nurses could “keep an eye on them” fell out of favor. It was replaced by an attempt (perhaps realized more often on paper than in reality, but an attempt nonetheless) to create a home-like environment where older people would feel valued and respected, and where they could find meaningful ways to spend their days. Critical to a sense of value, respect, and meaning are relationships. And relationships are between people. 

David Oliver, a geriatrician and general medical consultant in the UK, worries that the robotics industry may be driven in part by “marketing, the financial bottom line, and passive acceptance of workforce gaps.” Taking issue with the claim that robots can “provide rehabilitation…deliver personal care, and reduce social isolation,” he reminds us that “we should never forget that health and social care is a people business (emphasis added) and that those people might prefer more, not less, human contact.”

So—before we endorse the tagline, “robots to the rescue,” let’s think about the domains in which robots truly have something special to offer. In the nursing home setting, they could literally lighten the load for nursing aides, who right now have one of the highest rates of on-the-job injury in any industry, if they could lift patients out of bed and onto a wheelchair. That’s no easy task, both since we have to worry about the robot applying excessive force and crushing the person, and because frail, older people aren’t likely to remain motionless while they are lifted into the air. They could engage in monotonous, repetitive actions such as bringing lunch trays from the kitchen to their designated recipients. In the home setting, they may be able to provide 24/7 safety monitoring for older individuals with frailty or dementia, potentially allowing them to remain in their own homes with a spouse. But let’s make sure that the robots’ roles are to complement those of flesh and blood human beings. Let’s enable nursing aides and other caregivers to establish and maintain relationships with the subjects for whom they provide care. Let’s find ways to promote this newly reimagined career path to more people than are interested in today’s dead-end, low-paying, back-breaking jobs. Robots can help but they are not the solution.

November 19, 2018

Yearning to be Free

For the past couple of weeks, I have not found any burning geriatric issues to report on. So instead, I will discuss a burning moral issue, an issue that emerged 75 years ago--so perhaps in that sense it is a geriatric issue.            

            Nearly 76 years ago, on New Year’s Eve, 1942, three teenaged girls made their way through the snow and under a barbed wire fence from France to Switzerland. Cold, frightened, and desperate, they saw asylum in Switzerland as their only hope. They had been sent by their parents from their homes in Germany to Belgium to avoid persecution in 1939. When the Germans invaded Belgium in 1940, the girls had escaped to southern France where they lived in an abandoned castle with 100 other Jewish refugee children. They had been rounded up by the French police and would have been transported to Auschwitz if their supervisors from the Red Cross had not managed to intervene. They knew there would be another roundup and they would not be so lucky again. They knew that their days in France were numbered.
            The girls also knew that official Swiss policy was to turn away Jewish refugees who crossed the border. Despite the intelligence that had reached the Swiss government about mass murders of eastern Europe Jews, and despite the deportations of western European Jews that had begun earlier that year, the Swiss government sealed its borders in August, 1942.  While narrowly maintaining that it continued to provide asylum to “political refugees,” the government decreed that“refugees who have fled purely on racial grounds, e.g., Jews, cannot be considered political refugees. Such people should be refused entry without exception.” After widespread protests, the Swiss authorities allowed some exemptions, including pregnant women and children traveling alone under the age of 16. The three girls who walked across the border unaccompanied by adults that frigid New Year’s Eve were seventeen. One of them had turned 17 the previous week, on Christmas Day.
            They had no papers, so they lied about their ages—and they survived. If they hadn’t, I wouldn’t be telling this story, as one of those three girls would one day be my mother.  An estimated 24,500 would-be refugees were not so fortunate and were sent back over the Swiss border to face almost certain death.
            In the aftermath of World War II, the United Nations convened a conference on refugees. It was a direct response to the post-war refugee crisis in general and to the mistreatment of refugees by Switzerland in particular. At its heart is the concept of non-refoulement, a principle “so fundamental,” the Convention asserts, “that no reservations…may be made to it. It provides that no one shall expel or return (‘refouler’) a refugee against his or her will, in any manner whatsoever, to a territory wherehe or she fears threats to life or freedom.”
            The Convention was ratified by 145 countries in 1954. Broadened in 1967 to refer to refugees everywhere in the world, not just those seeking asylum during the 1940s, it was ratified by the United States and remains the basis of international law today. The Convention specifically stipulated that refugees should not be penalized for “illegal entry or stay.” 
            The refugees of today, including the group of desperate Central Americans proceeding on foot toward what they believe is their only chance of freedom, look a little different from those of the 1940s. They are women who have been threatened with rape if they fail to do the bidding of drug traffickers; they are adults who are lesbian or gay and are targeted for elimination by extralegal police; they are children whose relatives have been kidnapped for ransom and who fear a similar fate; they are men who have been extorted by organized crime. But, like my mother, her friends, and the other refugees from Nazism who were able to breach the Swiss border in the 1940s, the participants in the “Caravan” fear threats to life or freedom in the countries they come from. 
            We must not make the mistake of confusing “immigrants” with “refugees.” Immigrants are people from other parts of the world who seek a better life in this country. They want to come here to be educated, to work, and to live. The US sets its own policy toward these seekers and there is broad agreement that its current policy should be redesigned to better reflect our national interests. But refugee policy is set by international law. It is based on the enduring principle that anyone whose life or liberty is endangered in his home country and who manages to reach a freer country, however he manages to get there, is entitled to asylum. To violate that precept by failing to allow refugees to make their claims for asylum is to flout the internationally agreed upon principle of “non-refoulement.” It is to return to the barbarism of the past.