June 28, 2015

Home Alone

Last week, I made the politically incorrect suggestion that patients don’t always know what it is that they don’t know. Continuing my contrarian streak, I’m going to suggest this week that home isn’t always what it’s cracked up to be, at least not for frail older people.

A recent study provides valuable information about the homebound population in the US. Examining cross-sectional data from the National Health and Aging Trends Study (collected in 2011), the authors were able to identify a nationally representative sample of just over 7500 non-institutionalized Medicare beneficiaries who were 65 or older. What they found is that 5.6% of the elderly, community-dwelling population were completely or mostly homebound. Extrapolating to the entire country, that comes to nearly 2 million people, where “completely homebound” refers to someone who never went out in the last month and “mostly homebound” refers to someone who went out rarely (once a week or less) in the last month. Another 5.3 million older people are “semi-homebound,” which means they go out at least sometimes (twice a week) but not by themselves (somewhat over one million people) or only with difficulty (the other 4 million people).

Interestingly, the study observes that the semi-homebound individuals are very similar to the completely homebound individuals in terms of disease burden and functional capacity. This suggests that social support is as important as medical conditions in determining the course of a person’s life. Environmental and psychological factors may also play a role. It is entirely reasonable to conclude--as the authors do--that providing adaptations such as stair lifts or grab bars and assistive devices (walkers and canes) could transform a person from being homebound to being semi-homebound or even from being semi-homebound to non-homebound. Other services such as home-based primary care could also make a difference.

The authors of the new study are also right to conclude that the information they have uncovered could “inform improvements in clinical and social services” for frail older people.  But it is equally reasonable to ask whether at least some of those dependent, disabled individuals might not be better off in a well-designed facility that offered social stimulation as well as physical assistance and medical care. I made a similar argument years ago in my paper, “Long-term care options for the frail elderly.” I made a similar argument just a few years ago in the paper “No place like the hospital,” where I suggested that the widely quoted claim that 80% of people want to die at home but only one-third do reflects what people say they want when they aren’t dying. When they actually get sick and are facing imminent death, at least some of the people who were previously so sure they wanted to die at home discover that they feel more secure and better cared for when they have round-the-clock nursing care and some of the technological interventions of the hospital. When hospitals were terrible at pain management and resolutely focused on maximally invasive medical treatment, they weren’t good places to die. As the availability of palliative care in the hospital has increased and the quality of pain management has improved, hospitals aren’t always such an awful place to spend one’s final days. 

The same is true for nursing homes. When the quality of nursing homes was abysmal, when residents sat tied up in chairs, lined up along dark, dingy corridors, and when they developed pressure ulcers because they were neglected by poorly trained staff, of course nursing homes were to be avoided. As standards were raised and resident-centered care took root in nursing homes, the quality of care improved. Sometimes nursing home care is superior to home care.

It’s still true that nobody wants to live in a nursing home. It’s also true that the majority of people don’t want to die in a hospital. But what many of those people really mean when they say they don’t want to live in a nursing home is that they don’t want to be very disabled and dependent. What they really mean when they say they don’t want to die in a hospital is often that they don’t want to die. 

It's all too easy--and too commonplace--to confuse an undesirable state of being (disabled, dying) with a site of care (the nursing home, the hospital). But preventing disability and death is one thing; figuring out where to go when frailty develops or death is imminent is something else entirely.

June 24, 2015

June 22, 2015

Caveat emptor. What I’m about to say isn’t politically correct, so reader, beware. The underlying assumption in many medical circles these days is that patients know best what they need to know and what they need to do to maintain their health. The Patient Centered Outcomes Research Institute (PCORI) research agenda—and PCORI, established by the Affordable Care Act, is one of the major sources of funding for medical research today—requires that patients participate in the design and implementation of research projects because, well because patients know best. Now I agree that we doctors need to do a better job listening to patients. I fully accept that patients are the only ones who can say what matters most to them, and that what they care about should shape what treatment they get for a medical problem. That’s why I argue repeatedly that it is for patients to figure out whether they are most concerned with life-prolongation, with daily functioning, or with comfort, assuming they have to make a trade-off—though I also claim that it is doctors and not patients who can figure out how to translate those goals into a treatment plan. But sometimes, perhaps fairly often, patients don’t know what they don’t know.

Last week I blogged about the new report, “Caregiving in the US,” which reported some interesting statistics on what kind of information caregivers said they’d like to have. The findings—that almost all of them expressed an interest in more information about something, with keeping their relative safe at home and managing stress at the head of their wish list—provide valuable information. 

But what’s striking to me is what the caregivers didn’t mention at all. They didn’t say anything about needing to know more about the medical diseases (apart from the behavioral manifestations of dementia) that afflict the people for whom they provide care. A new article in The Gerontologist very pointedly states that family caregivers need to know about delirium: what it is, how to prevent it, and what to do when it occurs. 

Developing acute confusion occurs commonly in older individuals, particularly those with underlying dementia. It is a potentially dangerous condition that is often incorrectly diagnosed. Typically triggered by any one of a variety of drugs, infections, or chemical imbalances (for example, sleeping pills, urinary tract infections, or dehydration), it can cause either agitation or excessive sleepiness and it is distressing to both patients and their caregivers. Moreover, delirium has been associated with longer hospital stays, decline in daily functioning, and even death. A systematic review of the literature carried out by the authors of the Gerontologist paper confirms that when caregivers discover that their charges are acutely agitated, they rarely realize what might be precipitating the change and are often slow in responding, sometimes resulting in the need for hospitalization (which itself can cause or exacerbate delirium). Failure to appropriately address delirium also heightens the caregiver’s sense of inadequacy and insecurity.

Despite the ample evidence that delirium has adverse effects on both caregivers and patients, there is a paucity of studies looking at the effect of the few available delirium-related educational tools on outcomes. One promising intervention taught caregivers to use the Family-Confusional Assessment Method (FAM-CAM) to identify delirium and another designed the Family-HELP program, in which hospital nurses trained family caregivers to manage delirium using one of several protocols.

The Gerontologist article reminds us that family caregivers play a critical role in the identification and treatment of medical problems in older individuals, particularly those with dementia. Having dementia does not protect patients against the other diseases of old age such as congestive heart failure and pneumonia. Whether caregivers realize it or not, they play a pivotal role in the medical management of their family members. It’s time to expand “caregiver support” and “caregiver education” to include a more in-depth understanding of the full range of diseases that affect older people. 

June 15, 2015

Taking Care of the Caretakers

It’s been six years since the last comprehensive study of caregivers in the US. A lot has happened since then—America is getting grayer, people are living longer, and the safety net, which was never terribly large, is fraying. A new report, just released, shines light on caregivers at a crucial moment: America is getting older, people are living longer, and Congress just launched a bipartisan caucus, “Assist Caregivers Today,” that’s supposed to come up with policy recommendations. 

The big picture hasn’t changed much over the past few years, though the study’s authors at the AARP Public Policy Institute and the National Alliance for Caregiving hasten to remind us that we can’t really compare the numbers because the methodology has changed. The change reflects the discovery that since 43% of adults rely exclusively on cell phones for communication and don’t have a landline—and another 17% have a landline but rarely use it—it was time to stop doing surveys by randomly selecting numbers from a telephone book. The current study uses a complex process of both cell and landline phone numbers along with residential addresses for the initial screening and on-line interviews (with a laptop and WIFI connection supplied if needed) for the final survey.

Whether or not the results are new, they continue to be startling. All told, just over 39 million Americans over the age of 18 report providing hands on care to another adult in the previous twelve months. Their average age is 49, but 10% are over 75. The vast majority of care is for a relative (85%), usually for a parent or parent-in-law. And these caregivers spend an average of 24.4 hours on care every week. One quarter of caregivers spend over 40 hours a week attending to their caregiving responsibilities.

I was particularly interested in reading about what caregivers actually do. Two out of three attend to health care issues, with 57% of this effort devoted to complex medical or nursing tasks such as catheter and colostomy care, tube feeding, or injections. Most of the caregivers engaged in this kind of technical assistance have no prior experience with anything medical.

What was also striking was what caregivers said when the were asked about the kinds of information they felt they needed to do a good job. The main areas were keeping the recipient safe at home (42%) and managing caregiver stress (42%), though almost everyone said that they wanted more information about one or more of the domains suggested, including making end of life decisions (22%), managing behaviors (12%) and managing incontinence (11%). And interestingly, only one third of the respondents report that a clinician ever asked them about what kind of help they needed as a caregiver.

Where do we go from here? You can join a new organization, the Caregivercorps, that is devoted to persuading both political parties to adopt a plank on family caregiving in their party platform. You can write to the members of ACT, the Assist Caregivers Today caucus chaired by Senator Michael Bennet, with your suggestions about legislative support for caregivers. And you can recommend re-introducing the National CareCorps Act, a bill that would have established a national service dedicated to helping older individuals modeled on the Peace Corps. For "you are not obligated to complete the work, but neither are you free to desist from it."

June 08, 2015

Getting to Yes

In an insightful new book, medical anthropologist Sharon Kaufman persuasively delineates the forces that lead older patients to “yes.” Despite all the rhetoric about shared decision-making, about patients making choices based on their personal values and preferences, an interlinked series of powerful forces conspire to shape that “decision.” It’s not surprising, according to this compelling account, that invasive technology is used so extensively in older patients, with the threshold for what is considered old constantly rising.

The first step, in Professor Kaufman’s account, is that the scientific establishment, fueled by NIH and increasingly by private industry (medical device makers and pharmaceutical companies), develops ever more sophisticated, potentially life-extending technology. If the FDA finds the technology to be “safe and effective,” then Medicare, the insurer for virtually every person over age 65, will by and large pay for it. Once payment is assured, the technology quickly moves from being “acceptable” to being the “standard of care.” After all, surely whatever is on offer must surely be advisable. And if it might prolong life, and it’s free (or almost free), why not? Finally, the families who will often be the ones to administer or monitor the technology if patients avail themselves of it, and who will take mom or dad to the hospital when something goes wrong, find themselves in a position of feeling morally required to support the technology’s use. Sometimes that even means donating a kidney or resigning one’s job.

Kaufman concludes that there’s no simple fix to a health care system that relentlessly provides more and more to older and older people, regardless of cost and despite its burdens. Simple “decision aids,” with their focus on rational choice and clear depiction of risks and benefits, cannot possibly counteract the “ethical field,” the social, cultural, and market-driven environment in which patients along with their families and their doctors operate. But I think there is a ray of hope. And it may be a brighter ray than what Kaufman proposes, which is that if only we understood the complicated underpinnings of today’s reality, an understanding that she goes far to advance, we would be in a better position to change that system. 

I suspect that her linear model of the forces propelling us towards ever more technology in medicine—the scientific enterprise, the FDA, Medicare, societal norms, and patient/family morality—is actually more complex. It’s very likely a series of feedback loops, with each factor influencing and being influenced by all the others. Yes, scientific discoveries and technological inventions, when their efficacy is demonstrated in clinical trials, lead to Medicare reimbursement. But the awareness on the part of the device manufacturers and the drug companies of the circumstances under which Medicare will pay for their products also shapes what avenues of inquiry they pursue. Yes, patients’ understanding that Medicare will pay for a device or a procedure shapes their view of the standard of care. But patients’ expectations also influence Medicare’s coverage decisions.

If the health care system is even more complex than “Ordinary Medicine” suggests, doesn’t that make reform even more hopeless? Not necessarily. Precisely because the current system is sustained by multiple feedback loops, it may be possible to effect change by applying pressure on a single lever that operates in multiple loops. That lever is the Medicare program. We may not be able to reform capitalism or to change the tendency for patients to assume that whatever is paid for by health insurance constitutes necessary care. But we just might, someday, be able to modify Medicare.

May 31, 2015

Finding Our Way

The last year of life is often filled with trips to the emergency room, admissions to the hospital—frequently the ICU—and multiple visits to medical specialists. The treatments patients endure during that final year are burdensome, invasive, and costly. And in the end, they die anyway.

The problem with this kind of analysis is that it starts with the time of death and works backwards. But we don’t know in advance who is going to die. What about all the people who undergo aggressive treatments and don’t die? Isn’t it possible that they live longer, and sometimes better, because of all those doctors and hospitals? We will all die eventually and the very old will die sooner rather than later. The challenge is to predict how we will get from here to there so that we can make reasonable choices along the way. A new study in the BMJ offers a possible means of figuring that out.

We’ve known for some time that older people follow different trajectories near the end of life, and that a useful way to characterize those trajectories is by the extent of dependence and disability. A rough approximation of what happens is:

A more refined description suggests that there are five distinct “trajectories of disability” in the last year of life and that particular medical conditions—heart failure, cancer, or frailty—do not alone determine the path. The new study indicates that a powerful determinant of the path, independent of the medical condition that proves to be the cause of death, is hospitalization.

The authors had the opportunity to analyze data from an ongoing longitudinal study of 754 community-dwelling older people over the age of 70 who were initially independent in four essential activities of daily life: bathing, dressing, walking, and going from lying to sitting and sitting to standing. A comprehensive home-based assessment was conducted at baseline for every patient and then every 18 months for over ten years, as well as telephone interviews along the way. The evaluation included mental status, chronic conditions, and physical performance. Data was available on 582 decedents.

Using a complex modeling procedure called “trajectory modeling” which is a form of a complicated process known as “latent class analysis,” the authors ended up expanding their earlier classification of 5 trajectories to 6. At one extreme is the total absence of disability in the year prior to death (17.2% of decedents). At the other extreme is persistent, severe disability (28.1%) or the presence of marked disability a full year before death, disability that didn’t get any better. In between are catastrophic disability (11.1%), in which a patient becomes acutely disabled, for example from a stroke; and three forms of progressive disability: accelerated disability (9.6%), progressive mild disability (11.1%), and progressive severe disability (23%).

The striking result of the analysis is that without exception, the course of disability closely tracked hospitalization. No matter how the authors adjusted their analysis to account for possible confounders, the results remained unchanged. For every trajectory, being admitted to the hospital in a given month had a strong, independent effect on the severity of disability.

Now it’s possible that it was the acute problem leading to hospitalization, not the ensuing hospitalization, that caused the functional decline. The conclusion may be that we need to redouble our efforts to make hospital care for older people better, to try to improve over the modest progress we have made to date with ACOVE (acute care for vulnerable elders) units and fall prevention protocols. Or the conclusion might be, as the authors suggest, that patients admitted to the hospital with progressive, severe disability or with persistent severe disability, it would be best to suggest a palliative approach to medical care.

Whatever else we take away from this intriguing study, we should recognize what was perhaps obvious all along: it is often difficult and frequently impossible to predict from a single point in time what a given patient’s trajectory will look like. But if we consider two or three points in time and ask what the patient’s function is like over time, we can have a far better idea. Just as we cannot determine the slope of a line from just one point but we can calculate the slope from any two points—and we need more points to define more complicated curves—so, too, will we do better at prognosticating if we see patients as dynamic rather than static.

May 27, 2015

Getting from Here to There

We all have the same final destination: next blog post will discuss how we get from here to there.

May 25, 2015

Sneak Preview

Demographically, the US in 2050 will look much the way Germany and Italy do today: 20% of the population will be over age 65. Comparing the attitudes and beliefs of Germans, Italians, and Americans toward elder caregiving, as a new Pew Research Center report does, can give us a glimpse of our future.

The facts are intriguing. Twice as many Italians and Germans as Americans feel that government should bear the greatest responsibility for economic well-being in old age. This reflects today’s reality: in the US, 38% of the income among those over 65 comes from government sources such as Medicare, whereas in Germany and Italy 70% comes from public funds. It may also reflect the fact that there are fewer young people in Germany and Italy to bear the burden of caring for the older generation. The old age dependency ratio in both European countries is 30, which means there are 30 older adults for every 100 “working age adults,” defined as ages 15-64, even though 15 is seldom working age in these societies; in the US today, the dependency ratio is 19.5.

What I found particularly striking is that more older Americans continue earning money from working in old age than do their European counterparts: 32% of the income of elderly Americans derives from work, compared to 20% of that of Italians and only 13% of the Germans. It seems that Americans work more—and depend to a greater extent on working for their identity as well as for their income—than Europeans, who also have shorter work weeks and take more vacation time. And today’s Americans are far more likely to have a private pension fund of some kind, for example from their employer, than the Germans or Italians: 30% of American retirees receive private pension benefits, compared to 13% of Germans and 7% of Italians.

Those under 65 in all three countries have one belief in common: they are skeptical as to whether government old age benefits will be available to them when they retire. Paradoxically, Italians, who currently depend most heavily on the government for financial support in old age, are more convinced that adult children are obligated to provide financial help to their aging parents (87% assert this) than Americans (76%) or Germans (58%).

It’s sobering to note that though the US elderly are much better off since the introduction of Medicare in 1965, fully 20% of older Americans are poor—twice the rate in Germany or Italy. It’s also disturbing that the generous private pensions Americans received in the past are vanishing, as is employer-provided supplementary health coverage. American culture maintains an ethic of individual and family responsibility but is gradually eroding the support, both private and governmental, that makes that possible. 

If we want to focus on the family as the locus of care—and we shouldn’t kid ourselves into believing that older people won’t need care—we need to make sure that we develop rather than destroy what infrastructure there is in which those caregivers operate. That means more flexible and part time job options for caregivers (as well as for older people themselves) and technology that helps caregivers monitor remotely. It means developing a cadre of workers who can supplement the services provided by families and earn a decent wage doing do. It involves providing respite for caregivers so they can get mental health breaks and go on vacation. It involves nothing less than a societal makeover.

May 15, 2015

Dissing the Elderly

Every ten years since 1961, the White House has convened a Conference on Aging. It’s an opportunity for leaders in the field of Geriatrics as well as senior advocates and community representatives to articulate their vision of how best to assure that older Americans can lead dignified, meaningful, and healthy lives. We’re due for a WHCOA this year. But it’s the middle of May and the conference, while promised, hasn’t yet been scheduled. What’s going on?

It’s very simple. Congress hasn’t allocated the funds. The framework for the Conference has been established by legislation, and the legislation in question is the Older Americans Act. The problem is that Congress hasn’t re-authorized the Older Americans Act.

Failure to re-authorize the Older Americans Act doesn’t just mean undermining the White House Conference, which this year was supposed to focus on proposals to ensure retirement security, healthy aging, long term care services, and elder justice. It also means imperiling all the other programs supported by the Older Americans Act. The Act created a federal Administration on Aging and regional Area Agencies on Aging which provide funding for nutrition programs, congregate housing, and community services.

Our just-say-no Congress has evidently decided that the creed of personal responsibility extends to older people as well as to the poor, the disabled, and other vulnerable groups in our society. Medicare is too popular to roll back but other supportive services for older Americans can evidently be cut with impunity. After all, the people whose homes and whose meals are in jeopardy are poor, they often live in rural communities, and many are ethnic minorities whose first language is not English. They need others to speak out for them. So write to your Congressman. As Mahatma Gandhi said, a nation’s greatness is measured by how it treats its weakest members.