August 12th, 2008

_No Place Like Home_, Karen Buhler-Wilkerson

Subtitled: A history of Nursing and Home Care in the United States

I've been describing this as the "what was" in the three book reading series on end-of-life care, which I'm doing because that blog over at NYT (New Old Age) has been so fabulous and wonderful (altho yesterday's entry about the Sandwich Generation was pretty awful, likely reflecting Gross' child-free status. Easy to give flippant and gosh-if-you-were-just-a-little-smarter/efficient/better advice when you've never been in a given situation.).

First off, this is history, written by a nurse-historian (who knew?). Unlike _Nobody's Home_, which is a memoir, and _Old Age in a New Age_, which is a journalistic overview, _No Place Like Home_'s academic tone is a bit of a slog. Academic works don't have to have this tone, but it seems to be strongly encouraged so one can't blame her in particular. (Well, one _could_ but it wouldn't be fair. And she's far from the worst.) Bit of a slog to get through.

Also, as with many academic works, the thread is chronological, but not narrative per se, and the chronological movement from chapter to chapter has some exceptions -- there is a chapter focusing on issues of race, for example, which is internally organized chronologically. I like a strong narrative thread and missed one here.

Buhler-Wilkerson came to this project with a thesis: that the visiting nurse associations were unwilling to change and adapt to changing circumstances over the decades and that is why they nearly disappeared and have always had funding/respect problems. She is a good enough historian to recognize that this thesis does not survive a close encounter with the past. I have a huge amount of respect for her, in that she neither twisted the evidence, nor concealed her driving motive in writing this book. This is actually a great example in history of one of the most important things that happens in science but never gets much respect: the negative experiment.

But you might like to know what this book was about. Once upon a time (a little over a century and a half ago), some philanthropic women got together to engage in Lady Bountiful like activities. That wasn't new. People who say all care was provided by families until the thing go professionalized really miss interesting transitional solutions. Buhler-Wilkerson doesn't miss these solutions (altho she is at time somewhat judgmental about their efficacy). These philanthropic women changed the game in a couple of ways. First, they actively integrated their efforts with other assistance available at the time and place (church assistance, public dispensary, etc.). Second, they triaged (they focused on helping people recover from acute health crises and strongly resisted taking on chronic clients). Third, they fundraised.

Over time, and in particularly in larger cities that grew rapidly as a result of immigration in the late 19th century, this kind of Lady Bountiful activity involved a lot more fundraising, and hiring trained nurses -- thus came into being the Visiting Nurse, in what we might call NGO format, also nurses from Public Health departments, also from Life Insurance companies (who sometimes hired NGOs to provide services), also from Settlement Houses, etc. Some neighborhoods wound up with a half dozen different associations serving different problems/populations.

As these organizations grew, physicians took an interest, and organizations were at pains to find sympathetic doctors to provide standing orders as cover for their activities. At least one Settlement House started a walk-in clinic (Henry Street), whose tantalizing and fascinating story is only barely touched upon in this work.

The fundraising for these organizations generally revolved around scaring the heck out of rich people about the infectious diseases raging in the tenements which would reach into their Park Avenue (or whatever) cradles and kill their babies if effective help was not provided to control these epidemics (think Typhoid Mary). Public Health Department nurses, in particular, had some power to force the contagious to enter institutions to quarantine them, which caused all kinds of problems in fostering a trusting relationship between visiting nurses and the folk they were trying to help. There were also substantial cultural barriers between the nurses and their clients and, honestly, when you read what the nurses had to offer, you have to wonder how much good they could really do anyway.

For a variety of reasons (which I am increasingly dissatisfied with), epidemics of typhoid, TB, etc. dropped precipitously in the first couple decades of the 20th century. This messed with the fundraising mission. Also, recovery times from illnesses dropped (this is partly why I'm not overly enthused about the standard explanations I've seen about why disease rates dropped so fast -- but I'm really a huge fan of the more calories are good theory), which messed with employment rates for nurses. Around this time frame, hospitals started upgrading their image from places where the sick poor were locked up to protect the rest of the population to places where middle-class folk might go to have a baby. The private-duty nurses moved to hospitals in droves, and after a little while, hospitals started their own home-care organization.

Which brings us to Medicare. Boy. I'd love to read a history of Medicare (I found some of the stuff on the web). While visiting nurses kept hoping that public assistance programs and/or private insurance would solve their funding problems, that never really happened. They have managed to survive (I know they have -- my sister has worked in home care for an agency), but it continues to be a minimally respected, drastically underpaid group.

Is it worth your time? Oh, yeah. You want to see cycle of chronic health problems in action, here it is in all its glory:

(1) Scandalized public
(2) Funds/programs started to provide services
(3) Services massively oversubscribed and about to break the bank
(4) Funds/programs drastically curtailed
(5) Scandalized public
(6) Lather, rinse, repeat

_Everyone_ wants to do acute care. Some people are willing to do acute care followup. Fixing a defined problem so the worker can go back to work is Economically Really Great. _No one_ wants to do chronic care, especially for the already-not-working-disabled-and/or-elderly. It is Economically Not Great. These would be generalizations with huge exceptions, obviously.

Do I expect anyone other than me to read it?

Heck no.

If you read it, will you have any insight in what we should be doing now?


In some ways, this one was way more depressing reading than _Nobody's Home_. Fortunately, the idealistic but mesmerizing and inspiring _Old Age in a New Age_ is proving to be, well, inspiring.

amazing how unbelievably stupid smart people can be

NPR is doing a profile of MIT's International Design and Development Seminar, which is trying to come up with ways to save some small part of the developing world on a very low budget. One of the groups is trying to invent a very, very cheap incubator that will work in places with minimal infrastructure. I have not heard _one single use of the phrase kangaroo care_, which was invented in a developing region over thirty years ago and has _much better results_ than the most high tech incubators available _now_. It was developed _because_ cheap incubators don't work very well.

I don't know what to say. It's all been said (often by me) so many times already.

(1) Try _not_ to be all I-know-better-than-the-people-on-site.
(2) If you are _going_ to reinvent something, try to make it something worthwhile, like, say, a wheel.


Speaking of reinventing useful things, in _No Place Like Home_, page 119, there's a picture captioned:

"Infant wiggles while being weighed by a visiting nurse, 1920s. Visiting Nurse Service of New York, Center for the Study of the History of Nursing, School of Nursing, University of Pennsylvania"

In the picture, a nurse and a woman (presumably mama) are weighing a baby. Mama is wearing a cloche, and a drop-waist sundress (very cute!). The nurse has long sleeves, collar and cuffs, etc. The scale? A fish scale attached to a cloth which almost completely encloses the infant, held in the nurse's right hand with the left hand under the bundled baby in case of surprises.

My midwife in Seattle, upon doing a home visit, weighed T. in almost _exactly_ the same way: a fish scale attached to a modified ring sling. She wanted to know what the clinic scale said when we went in for a visit, as a way of checking the validity of her technique. FWIW, eBayers use fish scales and plastic bags and so forth to weigh all kinds of stuff. _Before_ I bought the book (much less read it), I bought a fish scale on Amazon, with exactly this in mind; they're accurate to some freakishly tiny amount (good enough to assess breastfeeding).

_This_ is worth reinventing.

What does "I'm not me" mean?

I keep running up against this; I railed about it a few days ago when talking about Illich and the problems I have talking about health care and medicine and so forth. R. was watching a Nova Science Now with a section about white brain damage from concussions with a _really articulate_ young man describing what happened to him after he got a concussion (couldn't do math for a while, etc.). He said he wasn't himself (really). His detailed explanation was fantastically clear and easy to understand.

I was reading the _massive_ followup to Tara Parker-Pope's poorly headlined entry on the Well at NYT about exclusive breastfeeding at 6 month rates. Several women there talked about "wanting their body back" from pregnancy and breastfeeding; some said they had "sacrificed" their body for a year already. I've heard this from other people as well.

I sympathize with the inability to do math: when I've had more than a certain amount of alcohol, I can't do math, either. Frustrating! But I feel like me. I'm just drunk. Another drink, and the room will be spinning. I still feel like me. I just also am going to shortly be worshiping at the porcelain altar. There will be regrets as well. But I feel like me.

When I've had really bad migraines, I've had full-sensory hallucinations: seen things, heard things, _smelled_ things, touched things -- that weren't there. I felt like me. I just was interacting with a very different reality than other people could. When I've taken Sudafed and gotten very, very paranoid, I really had to check behind the door for a murderer (even tho I knew, at the same time, I wasn't going to find anyone there). I encompassed two very different, completely incompatible beliefs about reality -- that I had to _act on_ -- but I felt like me right through the whole thing.

My weight as an adult, due to lack of fitness, depression, pregnancy, breastfeeding, etc., has varied widely -- close to a hundred pounds. I might or might not _like_ how I look (or feel) at any given time, but I feel like me. Not like, that is (or isn't) my body. I am me.

When people say "I don't feel like me" or "I'm not me", is this a verbal shorthand? Is this a term-of-art? Is this like saying, "Fine" in response to, "How are you?" even when you feel like shit -- a small, social lie that conveys the important information needed right now? "Fine" means you'll get through the next few minutes and/or you don't want the other person to get involved in whatever is up with you. Maybe you are fine. Maybe you just need to make it to 5 p.m. and get the hell out of here. Maybe you want them to keep walking so you can jump off the bridge without interruption. There's a wide range to, "Fine," but a big part of that answer is, "Leave me alone."

What does, "I don't feel like me" mean? I don't get it.