Map of life expectancy at birth from Global Education Project.

Thursday, April 23, 2009

Goin' Home

As I was walking through the hospital yesterday, a woman's calm, soothing voice came over the PA: "5-6 CCU, adult code blue." PA announcements are now very rare, fortunately, and they've learned to keep them cheery sounding and enigmatic when they are necessary, both of which contribute greatly to a less horrific experience for the inmates. However, as you have no doubt guessed, this was a call for the crash cart.

So it got me to thinking. While I'm sitting here pondering and writing and what not (mostly what not), not too many yards away from me, people are dying. So I got curious: what percentage of people die in the hospital? Where do Americans die? It turned out that this question was suprisingly difficult to answer. There is quite a lot of research done in Canada, where apparently their data systems make it easier. But in the U.S., it's mostly state-specific or based on samples intended to address specific comparisons such as race or disease, so it is hard to put together the big picture.

I did find a study by Weitzen et al (Medical Care;41(2):323-335) which was published in 2003, but uses data from a national survey done in 1993. Back then, they found that 58% of deaths occurred in hospitals, 22% at home, and 20% in nursing homes. The older people were, the more likely they were to die in nursing homes. Black and Hispanic people were considerably more likely than gringos to die in hospitals. These authors note that in the early 20th Century, it was far more common to die at home; that by the 1980s three quarters of deaths occurred in insitutions; and that the introduction of the Medicare Prospective Payment System in 1983 was associated with a decrease in hospital deaths and an increase in nursing home deaths. The latter is not surprising: hospitals no longer got paid for every day they kept people, instead they got a lump sum based on diagnosis, so it became in their interest to move people out.

The most recent relatively comprehensive data I could find was by Mitchell, et al (Journal of the American Geriatrics Society 53:299-305), published in 2005 and using data from 2001. They were specifically concerned with the location of death for elderly people with dementia, so they don't aggregate their numbers completely, but they present data that enabled me to do it (after a correction published a few months later). Their sample is limited to people age 65 and older, but that's most of the people who die.

About 1 3/4 million Americans age 65 and older died in that year. About 47% of them died in hospitals, 28% in nursing homes, and 21% at home. A small number died in other places, I presume while away from home, at the scene of a traffic accident or cardiac arrest. People with dementia, however, were far more likely to die in nursing homes -- 66.9% met their end there. People with cancer, interestingly, were considerably more likely to die at home -- 37.85 -- than people who died of other causes.

These authors seem to think it unfortunate that so many people with dementia die in nursing homes, since most people say they would prefer to die at home, but I don't personally have a problem with that. My father died in a nursing home, and he had no idea where he was or what was happening. If he had been at home my mother would have been burdened with the death watch and with his care, which was best left to professionals. However, I don't see much sense in people with cancer dying in hospitals, as 35.4% did. The remainder -- the majority -- Mitchell et al just lump together as "other conditions," so it's hard to make much sense of the numbers. The slight majority of these people with "other conditions" die in hospitals.

So there you have it - the predicted trend toward more people dying in nursing homes and fewer in hospitals since 1993 did occur, but it has been slow. In 2001, fewer people died at home than in 1993, with nursing homes drawing from both other settings. I don't think that's necessarily bad. It all depends.


Care Giver said...

Great, informative blog.

kathy a. said...

that sounds awfully judgmental, the authors' apparent view that it's bad so many people with dementia die in nursing homes.
dementia is the slow death. caretaking at home is a huge task, often completely eclipsing any other family life, and not affordable at all for a great many people unless their relatives are doing the work 24/7, uncompensated and with no lives left of their own.

my dad's first cousin is going to miss a big happy family wedding next month that she would desperately love to attend, because bringing her husband would mean she would spend all her time attending to him. she has not been able to make any family event since my dad's funeral in 2003. i sometimes see her for lunch, when her husband is in the hospital, or during his 4 hours of respite care every so often. she is not getting enough support.

it is good that more cancer patients are dying at home. i think hospice programs and general shifts in attitudes have helped that along.

back to the anecdotes -- my dad planned to die at home, with his cancer. he thought he had a while longer, though, and was still in treatment [so not in hospice] when he had some respiratory distress. his wife got neighbors to help load him into the car, and they went to the hospital. things were so confusing then that the ER put him on a respirator before realizing he had a DNR order. dad just hated that, and they weaned him off at his direction. but anyway, that is how dad ended up dying in the ICU, despite his plans to die at home.

i think that if he had hospice in the picture, they would have relieved his distress gently at home, and he would have avoided the drama.

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