September 17, 2017

Taking the Heat

When a record heat wave swept across Europe in the summer of 2003, elderly Parisians were particularly hard hit. “French heat toll almost 15,000,” screamed one BBC headline in September. The cause of death: dehydration and hyperthermia. The diagnosis of the problem: not enough air conditioning, made worse by too many physicians on vacation in August. Across Europe, over 70,000 people died of heat-related causes. We thought we were immune: our nursing homes are air conditioned and we have plenty of nurses, doctors, and regulations. But now we have the disturbing reports of 8 deaths among nursing home residents of a facility in Florida in the aftermath of Hurricane Irma. The nursing home lost power and its back-up generator was useless when a critical component, the transformer, failed. Despite access to an acute care hospital across the street, no one thought to transfer the frail, elderly long term care residents until they were already suffering from severe dehydration and/or hyperthermia. What can we learn from this very sad story?

First, we should drill down and look at the specific facility where the problem occurred. All of the west coast of Florida was affected by the hurricane, after all, but only one nursing home lost patients. The Rehabilitation Center of Hollywood Hills is a Medicare and Medicaid licensed 152 bed facility. It is a for-profit nursing home. And if we consult Nursing Home Compare, the site operated by the Centers for Medicare and Medicaid Services to allow consumers to compare the quality of different nursing homes, we find that the home currently has an overall rating of two stars, or below average. Even more revealing is the further breakdown: in the area of health inspections, it received only one star, or much below average, though in quality it got three stars (average) and in terms of the staff: patient ratio it actually got four stars (above average). So what exactly does this mean?

The problem at Hollywood Hills was not a failure to follow the rules—the facility had a back up generator and supplies for seven days (though their ice collection was presumably not terribly useful if they had no refrigeration). The problem was judgment. Nobody in charge determined that conditions were too dangerous and residents needed to be evacuated. They only figured that out after people began dying, although it takes a couple of days for a lethal degree of dehydration to set in. What our current evaluation system for nursing home lacks is the capacity to measure the ability to respond to novel challenges, to be creative. Perhaps we need to set objective standards, not merely relative standards. If we set the bar high enough, then the lowest performing facilities would still be adequate. That said, it’s striking that the overall rating of the facility was poor. Nursing Home Compare is on to something—we need to have a better way of insuring that the poorer facilities improve. 

The other take home lesson from the tragedy is that Hollywood Hills was the canary in the coal mine. Yes, only one nursing home in Florida seems to have behaved with such monumental lack of understanding of what happens to frail old people in sustained 100 degree heat. But the truth is that we will see more hundred degree weather—and more Hollywood Hills behavior—in the future. A recent government report—issued before President Trump and EPA Director Pruitt banned references to “climate change” from official documents, “The Impact of Climate Change on Human Health in the United States: a Scientific Assessment,” makes clear that there will be profound, widespread consequences of rising temperatures. The vulnerable elderly will be among the hardest hit, but they are merely harbingers of what is to come unless we take major steps now.

September 06, 2017

Make Our Lives a Blessing

Kaiser Health News ran an article this week about “the secret happiness as you age.” It features the story of a 76 year old man who, despite severe heart disease, diabetes, glaucoma, and osteoarthritis, describes himself as a “happy guy.” He can’t see well, he can’t drive, and he has to rest after walking short distances—really short, like 10 yards. So how does he manage to be happy?
His secret is that he focuses on those things in life that do bring him joy—listening to music and audiobooks, and writing. He also derives pleasure from helping others in small ways. The article concludes with a quote from a geriatrician who says that “the real key to happiness at every age and stage—particularly old age—is not material things, but gratitude for life’s simple blessings, like laughter among friends or watching a sunset with a loved one.”
The message that frailty doesn’t have to spell misery is a refreshing one. Readers of this blog know that I spend a great deal of time discussing frailty: defining it, advocating screening for it, and promoting an “intermediate” approach to care for people who have it. I lament the disproportionate time and energy spent on addressing robust old age and dying, two important states but not where most older people spend most of their time. The Kaiser Health article is an important reminder that we don’t need to hide frail people from view as though they carry an unbearable, unmentionable stigma. But what is missing from the piece is the recognition that while individuals who are frail can take steps to make their lives rewarding, the larger society has an important supportive role to play. 
Creating and disseminating the technological aids that can make life enjoyable are crucial: without his audiobooks and his virtual assistant (in the example given, Amazon’s Alexa), achieving satisfaction might have been impossible. We need to make age-friendly environments, like those promoted by the World Health Organization’s “Age-Friendly Cities and Communities Program.” This means building walkable communities, providing appropriate transportation, and linking service providers to individuals. It means developing accessible housing and means for civic participation, along with access to medical care. It means joining the AARP Network of Age-Friendly Communities or local organizations, such as the Massachusetts Healthy Aging Collaborative. Only then will happiness among frail elders be the norm rather than the exception.

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August 27, 2017

A Shot of Irish Whiskey

I recently stumbled across The Way We Die Now in the new books section of my local library. I hadn’t heard of it or its author, the Irish gastroenterologist Seamus O’Mahony, and I couldn’t find any reviews in American publications. Intrigued, I checked it out. It’s one of the more insightful—and simultaneously annoying—-of the  long list of books about death and dying.
The author makes several observations that are worthy thinking about. First, he says that dying is inherently messy and distressing; our attempts to sanitize it with what he calls the “syringe-driver” (Britishese for a “pump,” a way to deliver opioids such as morphine intravenously or subcutaneously or even directly into the central nervous system in a continuous, steady fashion) or with physician assisted suicide are vain attempts at controlling the uncontrollable. Second, and on a related note, he mocks the insistence by some that dying should be an occasion for “personal growth;” there’s nothing uplifting about dying and it is seldom an opportunity for repairing longstanding personal rifts. Third, he derides all self-proclaimed “death experts,” by which he principally means palliative care physicians, although he regards proponents of “narrative medicine” as similarly tainted. While acknowledging some of the contributions of palliative medicine, such as better pain control and the development of inpatient hospices, he feels strongly that the medical care of the dying should remain in the hands of primary care physicians.
Death is messy: O’Mahony discusses the writings of several public intellectuals, Philippe Aries, Ernest Becker, and Ivan Illich, on this subject. Aries, writer of the monumental history, Western Attitudes Towards Death, O’Mahony describes as a “romantic reactionary who looked back to an idealized, pre-industrial past” because he yearns for a peaceful death, at home, surrounded by family. Becker, author of The Denial of Death, argues that fear of death is the essence of being human and that each individual must sublimate his or her “fear of extinction with heroic projects designed to transcend death.” And Illich, iconoclastic writer of Medical Nemesis, laments the medicalization of death, exhorting us to “learn to cope” with the external constraints on the human condition.
I also was deeply influenced by these three writers: Aries because the historical perspective helps us see that the way things are today isn’t necessarily the way things have to be; Becker because I agree that the idea of an “immortality project” is tremendously useful for those of us who are aware of our mortality and don’t believe in an afterlife; and Illich because he opened my eyes to the notion that our world is excessively medicalized. Thanks to Aries, I have sections on history in many of my books—including my forthcoming Old and Sick in America, where I use an historical perspective to demonstrate the power of the Medicare program to shape the experience of illness. In homage to Becker, I called my last book, The Denial of Aging. And one of my earliest articles, a critique of the modern nursing home, decries its medicalization. I share with O’Mahony the view that death today is over-medicalized, that we shouldn’t expect to control the exact time and course of our dying, and that the clergy (including secularly oriented chaplains) and social workers are as necessary as medical doctors.
Death isn’t an occasion for personal growth: It’s not just dying that isn’t an opportunity for personal growth. The whole idea of “personal growth” rubs me the wrong way, at least as embodied in the work of Abraham Maslow, with his claims about self-actualization, or the “desire to become more and more what one is, to become everything that one is capable of becoming.” I’ve tended towards the view that each person should make the most of his or her own talents and abilities, and should seek satisfaction by applying those talents and abilities to improve the world. But whether or not self-actualization is every a desirable goal, surely it is too much to ask of someone who is dying that he or she continue to “grow.”
We shouldn’t leave death experts in charge: Palliative care increasingly sees itself as the specialty that is uniquely able to communicate, to break bad news, to help patients fill out advance directives, and to control pain and other symptoms. I am not as cynical as O’Mahony about the importance of communication and the possibility of physicians learning to be better at it—he drips with disdain as he asserts that “one of the more pernicious myths of modern medicine is the notion that a doctor with ‘communication skills’ and a sympathetic manner can somehow magically transmute bad news into something palatable…” Yet at the same time, he acknowledges that the “Liverpool Care Pathway,” an algorithm for caring for dying patients in British hospitals that was done away despite its many successes because of lapses in communication: “poor communication was at the root of virtually all complaints about the LCP.” And I think O’Mahony is mistaken when he ridicules the idea that breaking bad news is a special skill—the issue isn’t that when done well, patients accept the news with good grace; rather it’s that when done badly, patients feel abandoned, frightened, and angry. Finally, I share O’Mahony’s concerns about instructional advance directives—documents that purport to dictate exactly what medical procedure will be done in particular circumstances. He writes that “advance directives perpetuate an illusion that we can control, in minute detail, our treatment of an unpredictable illness at some unknown time in the future.” But to confound advance care planning, which can focus far more broadly on goals rather than on the specifics of treatment, with advance directives, that are either uselessly vague or excessively specific, is profoundly misguided. 
That said, I agree that palliative care principles—a view of the end of life as necessitating far more than just medical care, a belief that patients and families need information and guidance to be provided by a kind and compassionate professional, and a recognition that physical symptoms can often be ameliorated if not ablated---should be an essential part of what all doctors do.
So ignore the misunderstandings about the American health care system—O’Mahony says that nearly half of Americans die in hospice care because insurers discovered that “it saves money” and is seemingly unaware that this is predominantly home hospice, not institutional hospice, and that tthat the work from Mass General showing that early palliative care prolongs life in advanced cancer said nothing about cost. He likewise thinks that “in the US” death with dignity “has become a euphemism for euthanasia” (it hasn’t). Try not to mind the ridicule he heaps on both dignity therapy and narrative medicine, which he accuses of advocating that physicians take on a “quasi-sacerdotal role.” Appreciate instead the nuggets of truth: a physician’s job is the treatment of illness (not spiritual malaise or existential angst); the syringe-driver (or morphine pump) “allows for a softer, less frightening, final agony;” “palliative care should be at the center of what all doctors do;” and physicians should treat patients with kindness, courtesy, and yes, dignity.

August 21, 2017

A Bundle of Joy

As expected, CMS announced last week that its “Comprehensive Care for Joint Replacement” program was on its deathbed. This program “bundles” Medicare payment for hip and knee joint replacement surgery into a single payment to cover hospital and post-acute care. Initially rolled out on a trial, voluntary basis, the program became mandatory for all hospitals in 67 areas of the country. The plan was to extend it to 98 metropolitan areas. Instead, is cutting back the number of areas where the program is mandatory to 34. Since Tom Price, Secretary of the Department of Health and Human Services, has previously stated that the mandatory bundling initiative was tantamount to “experimenting with Americans’ health,” and CMS director Seema Verma concurred, the retrenchment bodes ill for the health of the program going forward.
Now, bundling as instituted by CMS is not perfect. The way the program works is that hospitals are held accountable for the cost of care during the hospitalization and for 90 days during the post-acute period. The hospital gets a bonus if the total cost of care falls below a set threshold and pays a penalty if it exceeds that threshold, incentivizing the hospital to work with orthopedists and rehab facilities to optimized care. Concerns have been raised that hospitals are unfairly penalized for providing care to sick, complex patients because the reimbursement rate is not adjusted to account for these factors. Hospitals have protested that they should not be the only ones to be held to account—why not extend the circle of responsibility to include orthopedists and the post-acute units themselves? But while the program could be improved, it has nonetheless shown great promise.
First there was the voluntary program, which led to a greater fall in costs when reimbursement came as a bundled payment than with conventional fee for service payment. More impressive, since after all a voluntary program selects for those institutions that are best prepared to improve performance, were the preliminary results of the mandatory program. In one of the 67 areas where the model was mandatory, average Medicare expenditures per episode fell 21 percent; in patients with complications, expenditures fell 14 percent. A little more than half of the savings came from internal hospital cost reductions; the remainder came from decreased post-acute spending. Quality remained unchanged.
What’s important to realize is that bundling makes sense from a clinical perspective. It forces the players to coordinate care—if the acute care hospital sends patients out too soon or does not communicate with the rehab facility, readmissions are likely to result. It appropriately thinks in terms of “episodes” of care—ideally, it should incorporate the evaluation and diagnostic studies done prior to admission as well as hospital and rehabilitative care.
“Bundling” is the conceptual basis of managed care. It encourages everyone participating in patient care to share in the responsibility for clinical outcomes. The Comprehensive Care for Joint Replacement program is a step in the right direction. We should go forwards, not backwards. Let Tom Price know!

August 13, 2017

Rescue and Reform

A new poll conducted by the Kaiser Family Foundation found that nearly 80 percent of Americans want Congress and the President to modify the Affordable Care Act to make it work. They don’t want repeal and replace. 
       The numbers are impressive: 95 percent of Democrats and 52 percent of Republicans favor a legislative fix to the current law. Even among Trump supporters, an absolute majority (51 percent) support such an approach. In fact only 17 percent of the public (although 40 percent of Republicans) believe the Trump administration should act to initiate the infamous “death spiral” by taking such steps as eliminating the universal mandate and withdrawing subsidies to poor people. Taking Medicare as a model of sweeping, comprehensive health care legislation, we can look at just how much the program was reformed by Congress in the first 15 years after the law went into effect.
       Passed by Congress in 1965, Medicare first became a reality on July 1, 1966. In 1972, Medicare eligibility was extended to people under age 65 with long-term disabilities as well as to those with end-stage renal disease. This was no minor tweaking of the program: today 9.1 million people out of the 55 million on Medicare are in the under-65-with-disabilities category. In the last year for which data are available, Medicare spent a whopping $30.9 billion on end-stage renal disease out of total expenditures of $646 billion. 
       In 1973, “Medicare HMOs” were introduced. The federal government established standards for what benefits had to be provided, but basically outsourced plan design, management and marketing to private insurance companies. The name of this program has evolved over time, from Medicare Choice + to the current Medicare Advantage plan, but the idea remains unchanged: instead of enrolling in Medicare Parts A, B, and now D with deductibles and co-pays, Medicare enrollees can opt for one-stop shopping. Today, a record 17 million people, or 31 percent of all Medicare beneficiaries, are enrolled in a Medicare Advantage plan.
       Jumping ahead to 1980, the decision was made to broaden coverage of Medicare home health services, allowing more people to stay out of hospitals and nursing homes because they received physical therapy and occupational therapy, as well as visiting nurse services at home. At the same time, supplementary Medicare insurance plans (“Medigap”) for those people not enrolled in an HMO, came under federal oversight to cut down on all too common abuses found at the time. 
       And then in 1983, in what was perhaps the most far-reaching reform of the Medicare program ever instituted, prospective payment was introduced for hospital care. What this meant was that instead of hospitals charging whatever they wanted—with Medicare dutifully paying soaring bills—Medicare set rates that were based on the expected length of stay for a given condition. The hospital got paid that fixed amount (adjusted for co-morbid conditions and geographic variation in the cost of living) regardless of how long a patient was in the hospital. In other words, patients with an unusually long length of stay cost the hospital money and patients who were discharged unexpectedly early generated revenue for the institution. The result of this innovation, in addition to controlling how much money Medicare spent on hospitalizations, was to shorten length of stay, moving much “post-acute” to the home or the skilled nursing facility.
       Reforming Medicare didn’t stop in the 1980s. But my point is not to present an extensive history of the Medicare program (though if your interest is piqued, you might like my forthcoming book, Old and Sick in America: the Journey through the Health Care System); rather, it is to emphasize the complex, innovative, health care legislation seldom bursts onto the scene fully and impeccably formed. It usually needs to be fixed. The ACA is no exception.
       After chanting “repeal and replace” for so many years, the Republican majority needs to save face. But the way to do t do that is not to sabotage what we have, a compromise bill designed to save private health insurance rather than jettisoning the industry in favor of single payer coverage. The Republican Party should appropriate the idea behind the ACA as its own, acknowledging its true founding father, the extremely conservative Heritage Foundation. Maybe what’s needed is a new mantra. How about “rescue and reform?”

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July 25, 2017

Pushing Palliative Care

The July issue of Health Affairs, a leading health policy journal, is devoted to “advanced illness and end-of-life care.” While most of the articles focus on people who are dying, or at least who are likely to die in a matter of months, a few shining exceptions endorse a broader view. The center piece of this effort, and arguably of the entire issue, is the call to action by several palliative care luminaries and two senior figures from prominent foundations. This distinguished group of health care professionals put forward an idea at once radical and conventional: a national strategy for palliative care, to be spearheaded by the federal government (based in the Department of Health and Human Services) and grounded in a public-private partnership involving payers, regulators, and foundations.

The idea is radical because it would put palliative care, a field only established in the United States in the 1990s, at the forefront of care for the majority of America’s sickest, neediest, most vulnerable—and most costly—patients. It is conventional because it follows the model of earlier bipartisan initiatives that influenced the health care system, such as the Office of National AIDS policy. And it is conventional because it continues the tradition of specialist care established in the US after World War II, an approach to medicine that is uniquely American—and at the heart of what makes our system expensive, inefficient, and out of touch with the needs of sick patients.

Don’t get me wrong—there is much to like and admire about this proposal. It rests on the assumption that the essence of palliative care, an emphasis on symptom management, advance care planning (or as the authors put it, communication about goals and preferences), and psychosocial support to patients and families, is exactly what people with serious illness and functional impairment need. I agree. It endorses the view that this approach to medical care is best delivered by a team of health care professionals. I agree, although I would add family caregivers to the team. And it assumes that the best way to move forward is to expand palliative care expertise (through research, workforce training, and caregiver education), establish standards of care, and assure access—which will require oversight, regulation, and financial support. I’m not sure this is the only way forward, but it is probably the most expeditious way to proceed and parallels the successful models introduced in New Zealand and Australia. It’s the specialist part of the proposal that makes me uneasy.

The authors define palliative care as a “team-based specialty focusing on improving quality of life and relieving suffering,” though they acknowledge that “primary-  or generalist-level palliative care” is another variant, one that “integrates palliative care elements into the care provided by all clinicians serving the seriously ill.” Implicitly, they hew to the old, and I would argue antiquated, distinction between “curing” and “caring.” Standard medicine, in this view, is about curing; palliative medicine is about caring. But in today’s world, where most, although not all, diseases are chronic, cure is seldom what usual treatment is about. Physicians cannot cure diabetes or congestive heart failure, they cannot cure endstage kidney disease or chronic obstructive pulmonary disease, nor can they cure Alzheimer’s disease or many cancers. There are, to be sure, some diseases that can truly be cured, principally infectious ones, but also some cancers and surgical problems. But for the vast majority of serious conditions that afflict adults today, all treatment is palliative. Modern medicine may prolong life, but above all, it lightens the burden of disease, thereby improving quality of life.

Now, if most of today’s serious illnesses are chronic, and most of contemporary medical treatment is inherently palliative, then why limit treatment to palliative care specialists? Surely all physicians who provide care for conditions such as congestive heart failure or COPD should be palliatricized. Only in particularly challenging cases would palliative care specialists be called in. Just as most cases of high blood pressure and heart failure are treated by internists, not cardiologists, but heart specialists have a role in refractory or tricky cases, just as most cases of depression and anxiety are treated by generalists, not psychiatrists, but mental health clinicians have a role in a subset of specially complicated cases, so too should non-palliative care specialists take the lead in caring for most patients today.

American medicine is at a crossroads. We could expand specialty care further by growing the field of palliative care. This is certainly the approach we have taken since World War II to dealing with burgeoning medical knowledge. It’s part of why American medicine is so much more expensive and inefficient than medicine in other developed nations. It is precisely the reaction against highly specialized care that resulted in the kind of person-centered care that is at the heart of palliative care. It is probably the easier path—easier than trying to educate internists, cardiologists, neurologists, oncologists and all other physicians who provide care to patients with advanced illness. Or we could re-conceptualize much of modern medicine as palliative and get rid of the false dichotomy between curative care and comfort care. The century is still young. Let’s get this right.

Life in the End Zone will be on vacation until August 13.
        

           



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July 17, 2017

The Secret to Staying Sharp

The last time that NIH requested a review of the data on preventing cognitive decline in old age (including Mild Cognitive Impairment, Alzheimer’s type dementia, and “usual” age-related cognitive deterioration) was in 2010. At that time, the systematic review of the published literature (performed by the Agency for Healthcare Research and Quality) and the associated state of the science conference (convened by NIH) concluded there was insufficient evidence to make any recommendations about interventions to prevent cognitive decline and dementia.

Now, the NIA has asked the National Academies of Science, Engineering, and Medicine to commission a new systematic review of the data and, based on that review, to issue recommendations about prevention. Its report, optimistically entitled, “Preventing Cognitive Decline and Dementia: A Way Forward,” was just released.  Alas, while the commission bent over backwards to find beneficial interventions, adding observational, non-experimental studies, risk factor analysis, and neurobiological work to the randomized controlled trials (RCTs) that were supposed to provide the evidence for their conclusions, it was forced to conclude, once again, that  the review “identified no specific interventions that are supported by sufficient evidence to justify mounting out an assertive public health campaign to encourage people to adopt them for the purpose of preventing cognitive decline and dementia.” The best the group could come up with was that the review did “find some degree of support for the benefit of three classes of intervention: cognitive training, blood pressure management in people with hypertension, and increased physical activity.

If we examine these three domains, what we find is not entirely encouraging. The arena of cognitive training (brain games, crossword puzzles, studying a foreign language, etc.) had the greatest degree of evidence. There is good evidence that it can improve performance in a trained task—that is, if you work at generating synonyms for words over and over again, you will get better at finding synonyms, at least in the short term. What is less clear is whether the benefits are sustained, whether training in one domain yields benefits in other domains, and whether it translates at all into improvement in daily functioning, in areas such as shopping, cooking, or paying bills. The good news, such as it is, about cognitive training, derives principally from one study, the Advanced Cognitive Training for Independent and Vital Elderly (ACTIVE), which provides moderately strong evidence of effectiveness in the training domain after 2 years but low strength evidence after 5 or 10 years. The improvements that were found failed to translate into areas other than the one where training was provided.

Perhaps surprisingly, given the strong evidence that blood pressure control in people with hypertension is beneficial in preventing stroke and coronary artery disease, vigorous blood pressure treatment did not so readily translate into prevention or delay of any form of cognitive decline in old age. One British study did show efficacy. Given that blood pressure treatment is already recommended for other reasons, encouraging its use in the hope that it might also help fend off cognitive decline evidently seemed harmless enough to the committee.

The story on exercise is similar to that on blood pressure control: the RCT data are inconsistent, but there’s at least some data that shows a positive effect. Exercise studies are problematic because they so often utilize different forms of exercise and prescribe varying duration and frequency of exercise. Nonetheless, given the evidence that exercise is useful to promote mobility and to prevent depression, and that some studies find it beneficial in preventing cognitive decline, the committee opted to include exercise in its short list of interventions for which there is “some degree of support.”

The main justification, it seems to me, for subtitling this report “A Way Forward” is the section on recommendations for future research. The areas that have shown some promise deserve further study. And that study, as well as all other avenues that might be pursued, should be methodologically sound. That means acknowledging the deficiencies of existing work and avoiding those flaws in the future.

I suppose that whether this report is encouraging or not depends on whether you are a glass half full or half empty sort of a person. I will certainly continue to exercise regularly and challenge my mind, as long as I am able to. If I develop high blood pressure, I’ll want it adequately controlled. But I won’t kid myself that any of these measures will get me off the hook. And I will continue to support ongoing research in preventing or delaying cognitive decline in old age. But I won’t hold my breath. So far, the secret to staying sharp is that there isn't one.