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.

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.

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.

Beer(s)

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.