August 22, 2016

In the PACE Space

One of the most disturbing articles I read this past week--from a geriatric perspective-- was a piece in the NY Times about a new development within PACE, the Program of All Inclusive Care for the Elderly. Private equity firms are setting up PACE (Program of All Inclusive Care for the Elderly) programs.

I am a great fan of PACE programs. They do all the right things for the frailest, most vulnerable older people, individuals who are enrolled both in Medicare and Medicaid and who are disabled enough to qualify for nursing home care: PACE keeps them out of nursing homes, prevents hospitalizations, and focuses on quality of life. It does this by engaging patients and families in advance care planning, by talking with them about what really matters to them, and by providing services ranging from podiatry to physical therapy to physician care at home or in the adult day health centers where many of them spend their days. The program receives a substantial sum from Medicare and Medicaid in exchange for their providing all the patient’s medical services. And until recently, PACE programs have always been not-for-profit. But apparently the government changed the rules a year ago and a number of for-profit companies have entered the “PACE space,” hoping to make a substantial profit.

Now I realize that PACE in its traditional form has had a problem—it hasn’t caught on. As of January, 2016, there were reportedly a mere 40,000 people enrolled in one of 100 PACE programs found in 32 states. But are private equity firms the way to go?

As part of the book that I’m writing on the journey through the health care ecoculture, I looked into the role of private equity firms in both the hospital and the nursing home sectors. What private equity companies do is to buy distressed facilities and turn them around so they can sell them for a profit. The jury is still out on what happens to patients in the process—but the data so far are concerning. According to a NY Times investigation of all nursing homes bought up by private equity firms between 2000 and 2006, the result was a dramatic decrease in the number of nurses caring for patients and a concomitant drop in the quality of care. Another report, this one by the Sacramento Bee about nursing home chains in California, found that after one company, Brius LLC, bought up skilled nursing facilities in the state, a slew of complaints ensued. Moreover, the company embarked on a complicated strategy of instituting a convoluted management structure to hide assets as a shield against civil and criminal liability. Nonetheless, the 81 nursing homes in the chain have attracted the attention of the California Attorney General, the California Department of Health Care Services, and even the FBI because of alleged negligence and abuse. To be sure, there is another perspective: of the 81 nursing homes in question, 59 were insolvent and on the verge of closing or else faced decertification due to poor care at the time they were acquired. The chain claims it improved care by investing in these troubled facilities. But it seems unlikely that borderline institutions would provide better care after Brius instituted a worse nurse to patient ratio, as happened across the board.

So when NY Times reporter Sarah Varney published a long piece on the foray by private equity into PACE, I worried. She describes how InnovAge, a Denver-based company, gained a $196 million investment from the firm Walsh, Carson, Anderson and Stowe, a multibillion dollar private equity company, to provide PACE services. The InnovAge model is to do what PACE programs usually do—but more cheaply, by substituting video calls for on site doctoring and other as yet undetermined strategies. The revenue for the new PACE enrollees will come from Medicare and Medicaid, as it always has. Maybe for profit PACE won't cut corners. Maybe rounded corners are desirable. But CMS needs to be extremely vigilant and have a low threshold for pulling the plug.

August 16, 2016

A Success Story

In a research letter published this week in JAMA, geriatrician Susan Mitchell presents some startling—and encouraging—data. She reports that between 2000 and 2014, the rate of feeding tube insertion in US nursing home residents with advanced dementia fell from 11.7 percent to 5.7 percent.
It’s an achievement to be proud of—and even though the rate of feeding tube use remains high in blacks, the extent of the drop over the last 15 years is if anything more dramatic in the black population: for whites in nursing homes who developed advanced dementia and feeding difficulty, the rate went from 8.6 percent to 3.1 percent; for blacks in went from 37.5 percent to 17.5 percent.

How and why did this dramatic change occur? Much of the credit goes to the work of Dr. Mitchell herself, who has tirelessly studied the use of feeding tubes in this population since the late 1990s. Her initial foray into the field was a study with the somewhat inauspicious title, “The Risk Factors and Impact on Survival of Feeding Tube Placement in Nursing Home Residents with Severe Cognitive Impairment.” Published in what back in 1997 was called the Archives of Internal Medicine, it provided the first compelling evidence that, contrary to common sense expectations, performing a surgical procedure to provide ongoing artificial nutrition to nursing home residents who, in the course of developing advanced cognitive impairment, had stopped eating, did not prolong life. It wasn’t a randomized controlled trial and it was confined to nursing home residents in the state of Washington, but it was a carefully conducted analysis of a reliable data base. 

When the findings were confirmed in subsequent studies, Dr. Mitchell went on to examine the nursing home factors associated with tube feeding (on-site speech therapy, low aide to patient ratios, and evidence of poor quality care) and the clinical and organizational factors associated with tube feeding (for profit status, large size, and urban location). She looked at the financial incentives for feeding tube use (Medicare pays more) and the cultural factors associated with feeding tubes (facilities with a home like environment, a focus on food, specially trained aides, and an emphasis on advance care planning were much less likely to use them).  And she established that the development of difficulty chewing and swallowing is par for the course as dementia becomes very advanced. Many other investigators contributed to the subject as well: a search on Google Scholar using the phrases “artificial nutrition” and “advanced dementia” today produced 1340 hits.

But evidence does not always change practice, especially in an area as emotionally charged as the use of food and drink. During the same period that tube feeding use was falling in advanced dementia, we witnessed the spectacle of Terri Schiavo, a young woman in a persistent vegetative state, whose feeding tube was repeatedly inserted and withdrawn for seven years as her husband (her official surrogate) and her parents battled in the courts. What else accounts for the change in behavior and what can we learn from this experience about how to influence health care policy?

I suspect three factors played a role in moving the medical profession, hospitals, and the public towards a growing acceptance of palliative care--and away from technological interventions such as feeding tubes-- for individuals with advanced dementia.

First, physicians who cared for individuals with dementia were increasingly disturbed by the suffering that they saw inflicted on their patients from the growing acceptance of technological interventions. It wasn’t just feeding tubes; it was dialysis and ventilators and ICU care. Just as CPR had spread from use in otherwise healthy individuals who suffered an acute myocardial infarction, complicated by a ventricular arrhythmia, to all dying patients, so too did other invasive technologies proliferate due to “indications creep.” But it was bad enough to do something unpleasant to a dying patient who understood the intention behind the procedure or test; it was worse to do something painful or frightening to a dying patient who was by definition unable to understand its purpose (or intended purpose). As patient involvement in decision-making became more common and competent patients had the option of choosing or rejecting Hail Mary treatment, the plight of the demented patient became more poignant. Several of us wrote articles arguing that from an ethical perspective, there was no requirement to provide patients in the final phase of life with artificial nutrition and hydration. In fact, it was arguably this growing malaise on the part of physicians with the widespread use of burdensome technology in patients with advanced dementia that led to the burgeoning research on its effects.

Second, the field of palliative care has taken off during the last fifteen years. While much of palliative care focuses on cancer patients and on patients who are imminently dying, the discipline is in principle concerned will all serious, life-threatening illness. The growing acceptability of palliative care—as evidenced, for example, by Medicare choosing to pay doctors and nurses for advance care planning meetings—has brought a recognition that what we customarily do to and for patients near the end of life is not always what they want or what is most beneficial to them. Responding to eating difficulties in a patient with advanced dementia by inserting a tube rather than by limited hand feeding is just another example of the tendencies that palliative care challenges.

Finally, forgoing a technological solution to a medical problem is attractive because it saves money. A gastrostomy tube in the setting of advanced dementia is an example of an intervention that manages to simultaneously be useless, burdensome, and costly. We need to find more examples of widely used treatments that meet all three criteria, such as renal dialysis in frail older people. Feeding tubes for people who are dying of dementia is just the beginning. 

August 07, 2016

Are there Truly No Atheists in Foxholes?

A nagging concern about advance care planning is the possibility that patients may change their minds when faced with imminent death. That’s not a problem if the person is still able to make decisions and really can change his mind. But for the majority of older people whose thinking is impaired at precisely the time that a potentially life or death decision about their medical care must be made, it is very much a problem. By etching their wishes in stone, is an advance directive too inflexible? Does it make it hard for surrogate decision-makers to change their minds on the patient's behalf?

We know that patients do change their minds over time as they adjust to their new (and presumably more  limited) level of functioning. The most extreme case that’s been described comes from younger patients:  individuals with quadriplegia after an accident are initially despondent; after they adapt to their situation, they still aren’t happy with their status, they would still much rather not have quadriplegia, but many if not most of them come to recognize that they are still human beings with emotions, feelings, and abilities. Whatever suicidal tendencies they had at the onset of their disability have typically abated. 

Older people also change their minds over time about what they are willing to live with, but a substantial proportion shift from wanting their medical care to focus on prolonging life at any cost to wanting their medical care to focus on maintaining their level of functioning. And older patients who were recently hospitalized for a serious illness such as heart failure or a flare of COPD, when asked about what matters most to them, reportedly say they would not want life-prolonging treatment if it left them with severe cognitive impairment. But what about the very moment that they are in the hospital, acutely ill, and confronting their own mortality? Do they also say they would rather die than be left with dementia or profound disability? A research letter in JAMA Internal Medicine finds that many of them do.

It’s a small study (only 180 patients) conducted at a single academic medical center (in Philadelphia). They were all, by definition, able to engage in a discussion (actually a structured interview) about their preferences. They were all seriously ill, suffering from advanced cancer, severe heart failure or advanced lung disease. They were asked about 10 different possible forms of functional debility: bowel and bladder incontinence, relying on a breathing machine, unable to get out of bed, constant confusion, dependence on a feeding tube, needing constant care, living in a nursing home, being homebound, in constant, moderate pain, or confined to a wheelchair. While they differed in their ratings of various health states compared to death, large numbers rated each of the possible conditions as worse than death, and the first six were viewed as the same or worse than death by over half of all patients.

Now these patients were not actually confused and many of them weren’t incontinent, on a breathing machine, unable to get out of bed, etc., even temporarily. If they were, they might, like the young person with quadriplegia, adapt. But they were in the hospital with a serious enough illness that they could die. Presumably they knew that (though this is not clear from the article). And what is striking is that none of them had any limitations on life-sustaining treatment documented in their medical record. It’s unlikely anybody had spoken to them about which of the treatments they were getting or they might get could in fact leave them with exactly the condition they indicated in the interview they wanted most to avoid.

The possibility that there really are no atheists in foxholes has to be taken seriously. Maybe most people will change their minds about what treatments are tolerable to them if they are sufficiently close to death. The best we can do is to ask people about preferences who do understand something both about the state they may find themselves in and the nature of the treatment being proposed. That means we should do the asking when people already are old, sick, and debilitated, not when they are young and healthy.

August 01, 2016

The Emperor Has No Clothes

I’ve been studying Medicare’s new Hospital Compare website. Lots of people have complained about this particular ranking, which gives only 102 hospitals in the country five stars, some of them fairly obscure institutions. I’ve argued in the past that rankings are often misleading, that institutions try to game the system, and that they are often based on measuring the wrong things. But I was curious about how Boston area hospitals, hospitals that I’m familiar with, actually performed. I was particularly interested in how they compared to other hospitals in the country in those domains that Medicare chose to examine. The bottom line is that they didn’t do very well.

Not a single hospital earned five stars. The only major teaching hospital to earn four stars was Massachusetts General Hospital (MGH). And I was curious about its weaknesses: CMS reports two, in readmissions rates and in the timeliness of care. Now I’ve suggested that there may be an irreducible minimum readmission rate—the frailest, sickest patients are going to get sick again, no matter what kind of care they get either in the hospital or after they return home. The only way they aren’t going to be readmitted is if they are offered, and agree to, care exclusively at home (for example, home hospice). And unless we provide more ways that the frailest and sickest can get care at home (aside from hospice, for which not all will be eligible and not all those who are eligible will elect), and unless we discuss their goals of care and how best to achieve them, they are going to return to the hospital when they get sick again. Which they will. But it’s nonetheless striking that MGH—and every single other major teaching hospital in Boston—did worse than the national average in readmissions. That's not a problem with hitting an irreducible minimum. That's a problem achieving the achievable.

MGH’s other Achilles heel, timeliness of care, was also a problem for all the other leading Boston hospitals. Both these deficiencies suggest that the hospitals are not doing a good job of working with primary care doctors and community agencies to coordinate care, to make sure that whatever needs to get done is in fact done. That's a problem for geriatric care.

The other two principal teaching hospitals of Harvard Medical School, the Beth Israel Deaconess Medical Center (BIDMC) and the Brigham and Women’s Hospital (BWH), only managed to get three stars each. In addition to problems with readmissions and timeliness of care, they had assorted other difficulties. BIDMC’s “effectiveness” was on par with the national average, but no better. It did not demonstrate the efficient use of medical imaging. And BWH was below the national average in effectiveness and in safety. That’s disturbing.

The major teaching hospital of Boston University, the Boston Medical Center, also got three stars. It was the only large hospital that did worse than the national average in the domain of the "patient's experience," or how patients rated their stay. The principal teaching hospital of Tufts University, New England Medical Center, only got two stars, with problems in safety, readmissions, timeliness of care, and the efficient use of imaging. Not very impressive.

Two community hospitals, Faulkner and Newton Wellesley (both in the Partners orbit, the hospital system that owns MGH and BWH) got four stars. This result is a bit perplexing as Newton Wellesley, for example, was actually at (not above) the national average in safety, readmission, effectiveness of care and efficient use of imaging, and below the national average in timeliness. Evidently a bunch of B’s and only one C is deemed worse than a bunch of A’s and two C’s. The process of lumping all these measures together to get one final grade seems to me to lead to a misleading conclusion.

So I still don’t think it’s reasonable to conclude very much from the conglomeration that goes into coming up with a single rating. But I do think that observing that every single hospital in the Boston area was below the national average in at least one area and most of them, including the most prestigious institutions, were below the national average in several, is sobering. The areas Medicare chose to focus on are important for quality. There is no good reason for Boston institutions to have more difficulty with any of these measures than the national average. Boston, shape up!

July 26, 2016

Zigzag Care

I’ve been debating whether or not to comment on the recent article in JAMA Internal Medicine about the importance of continuity of care for patients with dementia. Continuity seems so obviously essential for patients in general and patients with Alzheimer’s disease or other forms of dementia in particular, that it scarcely seems worthwhile studying. But then I read the accompanying commentary in the journal by Eric Larson, Vice President of Research at Group Health, who said the article addressed “what I believe may be the most important but often neglected feature of ongoing care in patients with dementia—continuity of care.” Maybe the need for continuity was obvious to me but not to everyone, so I decided to chime in to the amen chorus.

The study authors looked retrospectively at a sample of fee for service Medicare patients from 2012 who were over age 65 and had a diagnosis of dementia. They classified them as having varying degrees of continuity of care depending on whether a large share of their doctors visits were to a small number of clinicians. Then they measured health care utilization over a one-year period. After correcting for socioeconomic conditions and comorbidities, they found that the low continuity dementia patients had more Emergency Department visits and hospital admissions than the high continuity patients. They also cost the system $24,371 per year compared to $22,004 per year, a statistically significant difference.

The truth is that we already know that coordination, integration, and continuity matter for frail older people and that what’s true for the physically frail is also true for the cognitively frail. The Guided Care program, for example, which features home geriatric assessment and ongoing care by a nurse, produces superior outcomes to conventional care in managed care settings, though not in fee-for-service Medicare. The GRACE program (Geriatric Resources for the Care and Assessment of Elders), a program intended for low income seniors, utilizes a team that provides consistent care, and saves money while improving care. And the UCLA Aging and Dementia Care Program for Comprehensive, Coordinated, Patient-Centered Care, which is specifically targeted to people with dementia, also uses consistent care with resulting improved well-being and lower costs. It operates within fee-for-service Medicare by essentially adding a layer of nurse-directed coordination and continuity to what might otherwise be a chaotic system. This program is associated with increased quality of care for patients with dementia, but health care utilization and costs have not yet been evaluated.

The real contribution of the new JAMA Internal Medicine study is not showing that continuity of care is important for patients with dementia. Its real contribution is the observation that continuity of care is difficult to achieve within fee for service Medicare. The vaunted idea of maximal freedom of choice—in this case, the freedom to go to different physicians who often work within distinct health care systems—is at odds with the approach we have come to learn makes most sense for frail, older individuals, including those with dementia. If frail patients are to have the best possible care—care that is congruent with their goals of medical care, that maximizes their quality of life and level of functioning, and that at the same time is “high value” (provides the best outcomes per dollar)—they need some kind of managed care.

We make trade-offs all the time. We make trade-offs when we pay a higher price for an energy-efficient car to save on gas in the future and when we opt for a small house in exchange for access to a better school system. We make trade-offs when we choose a cheaper, generic drug over a pricier brand-name drug even though advertisements and acquaintances insist the brand name pill is superior. We need to make similar trade-offs when deciding on medical care in old age. But to make a wise choice, we need to know that we are frail (or our caregivers need to know that we have dementia) and we need to know that managed care is better care.

July 18, 2016


My mother’s doctor runs a concierge practice—he charges his patients several thousand dollars a year on top of what they pay Medicare ostensibly so that he can provide a more personalized type of medical care. He is more available, provides more coordination of services, and has a nicer office than he did when he was part of a conventional group practice. I’m not fond of concierge medicine because it creates a two-tier medical system and it worsens the already existing shortage of primary care doctors. But I have to admit that my mother, who is 90 years old and is in fairly good health (she proudly points out that she takes only three medicines a day, one of which is a vitamin), has gotten the attention that she deserves from her doctor. He’s smart, caring, and competent. I figured he was doing a decent job providing medical care to octogenarians and nonagenarians even though he is an internist and not a geriatrician. Now I’m not so sure.

What changed my mind is that my mother needed a few forms filled out for an independent living complex to which she is applying. It asked the usual questions—about diagnoses, medications, and vital signs. But it also asked another kind of question that is equally important for a facility trying to decide if my mother is able to live on her own, with just one communal meal, weekly housekeeping, and on site social activities. It asked about what we in geriatrics call functional status: her ability to walk without an assistive device (she needs a cane or, for uneven terrain, a walker), her vision (she wears reading glasses as do almost all people her age), her hearing (she wears hearing aids, or at least she has a pair and some of the time she wears them), and her memory (she’s a bit forgetful). And it inquired about advance care planning: health care proxy designation and goals of care. Her physician didn’t know the answers to any of these questions. Why not?

My mother’s physician evidently doesn’t ask my mother about these issues unless she brings them up. He apparently doesn’t routinely test her gait or evaluate her memory or check her hearing. He watches her walk to the exam room and he talks with her. He figures that’s good enough. It’s something, but it’s not good enough.

If internists and family physicians are to provide the bulk of primary care to older patients, especially to those over 80 or with multiple chronic conditions, they need to think and act more like geriatricians. They have to be as interested in and knowledgeable about geriatric syndromes (falling, incontinence, dementia) as they are about standard internal medicine diseases (high blood pressure, diabetes, pneumonia). They have to incorporate the major elements of comprehensive geriatric assessment into their daily practice—things like mental status exams and advance care planning. They have to accept that lots of “minor” conditions such as osteoarthritis and eczema have as much or more of an effect on quality of life as “major” organ dysfunction such as heart failure or chronic obstructive pulmonary disease.

We can’t as a society rely on geriatric specialists to provide this kind of care—we just aren’t training enough of them and we’re unlikely to do much better in the near term. We have to use internists and family physicians. That means we need to do a better job in medical school and residency teaching them basic geriatric principles. Or perhaps we need to systematically assure that they work together with geriatric nurse practitioners and other advanced practice clinicians to compensate for their deficiencies.

July 11, 2016

Making Dollars and Sense with MediCaring

For roughly 20 years, a proposal to offer a new Medicare benefit for frail older people has gradually been building momentum. Named Medicaring, it's the brainchild of the pioneering geriatrician and palliative care physician, Dr. Joanne Lynn. Now, the Altarum Institute, where Dr. Lynn is the director of the Center for Elder Care and Advanced Illness, has launched "MediCaring Communities." Lynn and colleagues describe this new, revised model and offer a simulation to show how it could play out in practice in an article in the Milbank Quarterly. The bottom line is that the concept not only makes sense, but it also makes dollars and cents.

The basic premise is that we still do a poor job of caring for frail elders, exactly what I repeatedly argue in my blog posts: we prescribe the wrong medications, subject frail elders to too many tests, and provide treatment that makes sense for people with just one medical condition, not for people who are very old, have multiple chronic conditions, and suffer from impairments in their daily activities. As a result, frail elders are often hospitalized, where they develop delirium and falls and endure incontinence and iatrogenesis. If this state of affairs wasn’t bad enough, all this costs a fortune.

In response, the proponents of MediCaring Communities argue that we should instead address frailty by providing “reliable, supportive services and a care plan that reflects the frail person’s situation and priorities.” This is best achieved by integrating supportive services (transportation, social services, and housing) and medical care and by replacing some of the most expensive and burdensome medical services with additional support services. Those who would be eligible for this program would either be over 65 and have at least 2 areas of physical limitation (or dementia) or over 80, regardless of limitations. In addition to incorporating health, social, and supportive services, a community board would monitor and revise the program. And each participant in MediCaring would have a longitudinal care plan that reflects his or her personal goals of care.

The authors simulated how this program would unfold in 4 different communities, reflecting diverse environments: Akron, Ohio, Milwaukie, Oregon, Queens, New York, and Williamsburg, Virginia. Working with leaders in each area, 4 separate plans were developed that varied in the details of their operation but were similar in the overall strategy. What they found was that all 4 communities would generate substantial savings every month for each enrolled beneficiary. These savings would arise from reductions in inpatient hospitalization, decreased use of skilled nursing facilities, and lower use of long term nursing home care. In Queens, for example, the monthly savings per enrollee would total $250 in the first year, but rise to $537 by the third year. Cumulative net savings from the 4 communities was projected to be about $11 million by the end of the second year and $31 million by the end of the third year for the 15,500 eligible patients.

For MediCaring to work in practice, CMS would need to grant waivers to bypass various regulations that govern current Medicare provider organizations. But most important—and most challenging—it would require older people to be identified as frail (an estimated 10 percent of the population over age 65 is frail, with that percentage rising with age) and it would require that frail patients and their families accept the tradeoffs that underlie MediCaring. Is that a realistic possibility in this era where people don’t want to think about declining health and don’t want to limit their options?

The good news is that 42 percent of Medicare beneficiaries are enrolled in hospice at the time of their deaths--and hospice, like the proposed MediCaring program, demands tradeoffs. It's taken 30 years to reach the current level of participation: in 1987, 4 years after the hospice benefit was first introduced, only 7 percent of older patients were enrolled in hospice at the time of their death. But still today, many people only enter hospice in the very last days of life, too late to derive maximal benefit. Nonetheless, Americans gradually came to understand that their needs changed as they entered life's last phase and that hospice provides more of what they need and less of what they don't than conventional Medicare. We need to help older people and their families reach the same conclusions about MediCaring.

June 27, 2016

Life and Death in the End Zone

When President Obama announced a new, renewed war on cancer in January 16, saying “let’s make America the country that cures cancer,” many of us in the medical profession rolled our eyes. We’ve been at war with cancer at least since President Nixon issued the first declaration of war in 1971 and while we’ve won a few skirmishes, there’s a long way to go. The most impressive accomplishment over the last 50 years is a fall in the death rate from lung cancer—which is principally the result of fewer people getting lung cancer in the first place. And that’s related to a dramatic drop in cigarette use, not to better treatment.

To be fair, there are some areas of cancer care where progress has been stunning. Many forms of adult lymphoma can be cured. Ditto for some kinds of childhood leukemia. The treatment for a handful of diseases has gone from abysmally poor to stunningly successful with the introduction of totally new approaches to treatment—chronic myelogenous leukemia and selected cases of lung cancer are the poster children for the new world of targeted chemotherapy. But the other major advance in cancer care, which is less often touted than it should be, is in the treatment of dying patients.

We’d all love to be able to prevent cancer and we’d be thrilled to cure anyone who nonetheless developed the disease. But for now, and probably for the foreseeable future, cancer is very much with us. The latest statistics show that cancer accounts for 23 percent of all deaths, almost as large a proportion as for heart disease, which is responsible for 26 percent of deaths. And the good news—there is some good news here—is that far more patients who die of cancer receive the benefits of palliative care in their last days, weeks, or months of life. But what about the 77 percent of people who die but of something other than cancer? A new study reminds us that we don’t do nearly as well in caring for these people near the end of life.

Among patients who died in a VA hospital between 2009 and 2012, and there were over 57,000 such people, 74 percent of those dying of cancer received a palliative care consult at some point during what would prove to be the last 90 days of their lives. Among people who died of heart disease, lung disease, endstage kidney disease, or frailty, the rate was between 44 percent (for the frail) and 50 percent (for those with advanced renal disease). People who died of dementia and its complications fell somewhere in between, with 61 percent getting an inpatient palliative care consultation.

When the study authors looked at a couple of other indicators of dying well, they found the same pattern. People with cancer died in inpatient hospice units and had a DNR order at the time of death far more often than those with diseases of the heart, lung, or kidney, and people with dementia fell in between. For example, 43 percent of the cancer patients took their last breaths in a hospice unit but only 23 percent of those with cardiopulmonary failure. Likewise, roughly one-third of patients with kidney disease, cardiopulmonary failure or frailty died in the ICU, compared to only 13 percent of people with cancer. In this instance, patients with dementia fared best, with only 9 percent of them dying in the ICU.

The family members of patients who died were asked their opinion about the quality of end of life care their relatives received in the hospital. Using the Bereaved Family Survey, which 64 percent of families completed, the study found that 59 percent of families whose relative had cancer or dementia reported excellent over all care. Among the remaining families, 54 percent reported excellent care—which was statistically significant although not dramatically different.

People who die in one of the nation’s 146 inpatient VA hospitals may be different from the population as a whole. Most obviously, they are overwhelmingly male (98 percent). The VA has a long and venerable tradition of providing high quality, cutting edge geriatric care and has also taken the lead in the palliative realm. And studying only patients who die in the hospital—when about 70 percent of patients die somewhere else (for people over age 85, 40 percent died in a nursing home, 29 percent in the hospital, and 19 percent at home)--may not provide an accurate view of what happens to people near the end of life. But the study strongly suggests that while we still have a ways to go in optimizing cancer care, including at the very end, we especially need to redouble our efforts in caring for patients with non-cancer diagnoses. I would include dementia here: the study lumps the care of dementia patients together with the care of cancer patients as “good,” but the data suggest dementia is better seen as intermediate between the other two groups.

The trajectory towards death looks different for patients with congestive heart failure, endstage renal disease, chronic obstructive pulmonary disease or that nebulous disorder, frailty, than it does for patients with cancer. But that’s more reason, not less, for palliative care consultation. The JAMA Internal Medicine study does not address the barriers to receiving palliative care faced by this under-served population. I suspect there are barriers both on the physician side and on the patient side. The medical profession—and particularly cardiologists, pulmonologists, nephrologists, and neurologists—needs to endorse palliative care for everyone with advanced, life-limiting disease. But patients and families can help, too. Just speak up.

June 20, 2016

No News Is Bad News

Every year since 2007, I’ve been commenting on the annual update to the report, Alzheimer’s Disease Facts and Figures. The report came out at the very end of March this year, as it usually does, but I didn’t notice. April was a busy month for me. May was even busier and June shows little indication of letting up, but I suddenly remembered that I hadn’t seen the latest report, let alone commented on it. Here are a few highlights.

Both the current prevalence of Alzheimer’s disease and predictions about the future remain stable—and grim. We’re at 5.2 million people over age 65, with 11 percent of those over age 65 and 32 percent of those over 85 afflicted. By 2025, unless something changes very soon, the number of Americans with Alzheimer’s will be 7.1 million and by 2050, it will be 13.8 million, reflecting both the graying and the growth of the population.

People with dementia continue to have other medical conditions and it is the combination that drives up hospitalization rates and health care costs. Among people with Alzheimer’s, 38 percent also have coronary artery disease, 37 percent also have diabetes, 29 percent have chronic kidney disease, 28 percent have heart failure, 25 percent have chronic obstructive pulmonary disease, and 22 percent have stroke. There are, of course, other concomitant conditions—13 percent have cancer—but these are the big six. And because it’s so much harder to diagnose and to treat people who have an acute medical problem and also dementia, the hospitalization rate among older people with Alzheimer’s (plus whatever is sending them to the hospital) is now 538/1000, compared to just about half that, or 266/1000 among people who are over 65 but don’t have Alzheimer’s.

The cost of care for people with dementia is mind boggling. It’s always a bit tricky to compute a single number, but the best estimates are that the combination of health care costs, including hospice, and long term care costs is now $236 billion a year, of which Medicare and Medicaid pay 68 percent ($160 billion) and patients and families pay 19 percent ($46 billion) out of pocket.

To provide a little variety to the reports, which are otherwise depressingly similar every year, the Alzheimer’s Association always includes a special section on a new topic. This year’s special report is on the financial impact of Alzheimer’s disease on families, who provide over 80 percent of the personal help that people with dementia require. The conclusion from in depth interviews of a sample of caregivers is that taking care of someone with dementia can jeopardize the ability of the caregivers to buy food, it can jeopardize their personal health, and it threatens their financial security.

Is there a take home message from this sad saga? There are the usual cautions: Alzheimer’s disease is not going to disappear tomorrow so we better come up with better institutional arrangements today; caregivers have a crucial and under-appreciated role in providing and supervising the medical care of their family members with dementia; and long term care insurance is currently inadequate to shield families from potentially devastating financial burdens. But what struck me in reading through this year’s version of the report was one statistic I had not previously noticed: the reason families are so financially burdened is that 50 percent of Medicare beneficiaries have an annual income of less than $24,000 and less than $63,000 in total savings. That's a paltry amount. No wonder Alzheimer's is a financial burden on family members! For the young old, not to mention those who aren’t old by anyone’s definition, it’s time to start saving.

June 06, 2016

Rest In Peace

Geriatrics is not just about death and dying, but end of life issues are a prominent part of the field. As a geriatrician, I often recommend to patients that they record their life story for their children and their grandchildren. I have also gone to many memorial services, both for friends and for patients, as well to some funerals. But I’ve never written an obituary. Summarizing a person’s biography is a chance to put on paper the highlights of a life. It can serve to memorialize someone who is gone. And just as reminiscing can be therapeutic for older people who look back on their lives, writing an obituary can similarly be valuable for a family member who undertakes this responsibility. As a geriatrician and a daughter, I offer the following about my father, who died a week ago at age 92.

Hans Wolfgang Max Garfunkel was born in Koenigsberg, East Prussia (Germany) on April 24, 1924. His parents, Julius and Paula (nee Lonky) Garfunkel, lived in the picture-perfect town of Osterode, some 50 miles away, but with a population of only 18,000, Osterode was too small to have its own hospital and Julius believed his son should be born in a hospital. For the next ten years, the Garfunkel family, which also included an older brother, Günther, nine years Hans’s senior, remained in Osterode, where Julius ran a men’s clothing store. It was a pastoral setting, on the sparkling waters of a serene lake and a short drive away from the pristine spruce trees of a nearby forest. But Hans was from his earliest years more drawn to urban life and was thrilled when, in 1935, his family relocated to Berlin.

The move was precipitated by more than a yearning for city life. Not long after Hitler’s ascendance to power, the town of Osterode had marched its 170 or so Jewish residents down Main Street wearing placards around their necks announcing “I am a Jewish pig.” The Garfunkels had been spared; notified in advance of the planned “parade,” they had arranged to be out of town. The next indignity came when Julius was forced to “sell” his store for a pittance to a non-Jew. But the final blow was when the public high school was closed to Jews. There was no way the Garfunkel family would halt their son’s education. Instead, they moved to the exciting, cosmopolitan, and still relatively free capital city of Berlin.

Whatever naïve convictions the Garfunkel family maintained that the “Hitler craziness” was just a passing fad were shattered on Kristallnacht (the Night of Glass) in November, 1938. Hundreds of synagogues throughout Germany were torched, including the synagogue where young Hans had had his Bar Mitzvah just two years earlier. Thousands of store windows were smashed, their contents looted. And about 30,000 Jewish men were taken to “detention centers” in Buchenwald, Sachsenhausen and Dachau for the sole crime of being Jewish. They were humiliated, tortured, and many were “shot while trying to escape.” Julius Garfunkel may not have realized that this was just a dress rehearsal for what was to come, but he understood that he and his family had no future in Germany. He applied unsuccessfully to immigrate to the United States—state department officials helpfully informed him that the wait list for the Lithuanian quota (he had been born in Lithuania) was several years—but he was able to get Hans out on a special “Kindertransport,” a rescue mission to Brussels for about 90 Austrian and German Jewish children organized by a committee of wealthy Jewish Belgian women.

In January, 1939, Hans Garfunkel left Germany. He would never see his parents again. His father died in a Berlin hospital in 1942 after prostate surgery. His mother was deported in August, 1942. Along with 1000 others, she was taken by train to Riga, where almost the entire group (there were 3 survivors) were immediately murdered.
Hans lived for a time with a distantly related family in Brussels, attending a Catholic school. After outstaying his welcome—the unrealistic expectation of his parents and of the family sheltering him was that all the Garfunkels would be able to immigrate to England—he moved to a boys’ orphanage in Brussels.

The stay in Belgium was abruptly curtailed when the German army invaded the country in May, 1940 after a successful sweep through Denmark, Norway, and Holland. Hans Garfunkel, together with the 50 other Jewish refugee children in the boys’ orphanage and another 40 or so refugee children in a corresponding girls’ orphanage, got on a train bound for parts unknown. After meandering through the countryside for days, the group arrived in southern France, which would be their home for the next 2 ½ years.

That first winter was terrible. It was the coldest winter in years and the barn where the children lived was unheated. There were mice, rats, and other vermin. Most of the children had lice. They were malnourished. Some undoubtedly had scurvy. But then the group came under the protection of the Swiss Red Cross and moved to slightly better accommodations in an unoccupied castle, the Château de la Hille, also in southern, as yet unoccupied, France, not far from the Pyrenees. News of parents who “went on a trip,” never to be heard from again, was increasingly common. One of the girls in the group, Ilse Wulff, got a postcard informing her that her father, who had immigrated to Shanghai, had died. Seven years and a life time of experiences later, Ilse Wulff would marry Hans Garfunkel.

The charmed existence at the Château, which only in the context of the surrounding world of barbarism could possibly have been construed as idyllic, came to an end in August, 1942 when the French police rounded up all the over 16-year-olds as part of their agreement with their Nazi masters (while the south of France was not at the time occupied by German soldiers, its Vichy government was far from independent) to deport all foreign-born Jews. Hans (as well as his future wife, Ilse) were taken to camp Vernet, a way station to Auschwitz. Through the somewhat miraculous intervention of the Château’s Red Cross supervisors, the group was released.

But the writing was on the wall: France was not a safe haven. On Christmas eve, 1942, Hans Garfunkel made his way through the snow from France to Switzerland, crossing the border illegally. He would be followed on New Year’s eve by Ilse Wulff. Hans spent the next year in work camps in Switzerland, cutting down trees and engaging in other heavy manual labor, but at least he was safe. For a time, he managed to arrange to take high school classes in the evening and ultimately to attend school full time. He then took the entrance examination to the University of Bern, did extremely well, and enrolled in the spring of 1945.

The war was over in Europe and the future suddenly looked bright. At least, Hans had every hope of having a future. But in August of 1945, while again interned in a work camp during what was supposed to be the university summer vacation, he suffered a mental breakdown. He was hospitalized at a local psychiatric facility until the winter of 1946 when he resumed his studies. Then, in the fall of 1946, the Swiss authorities demanded that he emigrate, explaining that Switzerland “had no problem with anti-Semitism and didn’t wish to develop one.” Hans traveled to São Paulo, Brazil, where he was reunited with his brother Günther after more than ten years apart.

Dismayed by the corruption endemic in Brazil and distressed by both the ruling government, which was threatened from both the right and the left and itself assumed power over the previous semi-fascist régime in a military coup, Hans immigrated to the US in the fall of 1947. In New York City, he met an old friend from his days at the Château de la Hille, Ilse Wulff, and the two refugees found comfort in each other’s company. They married in Central Park, New York, in September, 1948.

Hans worked as a clerk for an export-import firm, earning paltry wages and struggling to make ends meet. He endured the indignity of a landlady who reported him and Ilse to the police as suspected Communists when they had a few visitors in their tiny, walk-up apartment. But in many respects, life was looking up. Hans and Ilse found a new apartment, had a daughter whom they named Muriel Ruth in May, 1951, and soon afterwards were sworn in as American citizens.

In the mid nineteen-fifties, Hans found a new job working for the US sales office of a British steel company. He was rapidly promoted, eventually becoming President of the firm’s American subsidiary. Hans would remain with Firth Cleveland Steel through its acquisition in 1972 by Guest, Keen and Nettlefolds until his retirement in 1986.

After retiring, Hans and his wife Ilse moved from New York to Newton, Massachusetts to be near his daughter, who was by then a practicing physician, and her family. He was a proud and devoted grandfather to Daniel, Jeremy, and Jonathan.

Throughout his life, Hans remained plagued by panic attacks and depression. He was nonetheless able to function as a high-powered executive, to travel widely, and to support his family. He was active in local politics as well as the Ethical Culture Society, Facing History, and a German-Jewish dialogue group until his admission to a nursing home in the fall of 2011. He died on May 29, 2016 of complications of Parkinson’s disease and dementia.