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.

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