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.

Home Sweet Home

Is home always what it's cracked up to be? See blog post this Sunday.

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. 

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."

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.

Just Say Yes!

For more on this insightful new book, see next blog post!