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January 26th, 2011

A panel of one

There's a really interesting discussion on The Incidental Economist, which I think is one of the best health policy blogs out there. Austin Frakt sort of gave the general reading audience something to think about with regard to end of life care. Mr. Frakt is a healthcare economist, and he's the primary author of the blog.

I don’t give assignments (how could I?) but this is the closest to one I will suggest. Listen to the Finding Emilie segment of the most recent Radiolab episode. It’s about a young woman’s near death and recovery after being hit by a truck. More than that, it’s about how her family participated in charting that recovery. How she was nearly left for dead, nearly sent to the nursing home for life, but, miraculously, is recovering. It’s an amazing story, the feeling of which can only be conveyed with the full audio-magic that the Radiolab team excels at.

After you listen, think about these questions:

  • What would you do if the story was your own?
  • Did Emilie receive too much health care? Not enough?
  • Did her doctors work hard enough? Did they make the right decisions?
  • If you were Emilie’s boyfriend or mother or doctor, would you have considered the cost of her care, how it was financed? If not, why not? If so, how would that have factored into your decision making?
  • If, ultimately, decisions most of us make in health are from the heart, how do we navigate the system rationally? Should we?
  • If you don’t think this is part of the crux of the health care cost issue, what is? Why do we love to spend so much? Are we thinking or feeling?

I can’t think my way through end-of-life issues. That’s not because I can’t think. It’s because that’s not what it’s about. In health, and perhaps in all things, if one disconnects one’s head from one’s heart, one never gets the full picture. One is left wondering why some people behave so, well, irrationally. How can they make such decisions?

The problem is not theirs, but ours. They’re not being irrational so much as just being human. Until we understand that we can’t understand anything.

The Radiolab segment is about 20 minutes long, and it is worth listening to if you have the time. In general, it tells the story of a girl who was hit by a truck, nearly killed and the lengths her family and boyfriend went to bring her back.

Aaron Carrol is the other main author on the blog. He also works in health care policy arena, but he's also a physician. He very rarely talks about being a doctor, and sometimes I forget that he's been in the trenches when he talks about health care policy. But he had a response to Mr. Frakt's query in the form of a beautifully written memory of providing care in the NICU when he was a resident.

These two posts made me think of my own encounters with end-of-life situations.

When I was in high school and college, I thought I wanted to be a doctor. I took all of the courses, I learned everything I could about health care, and I worked summers in a hospital as a nurse's aide. This is a grunt job, a dirty job that probably would be featured on Mike Rowe's show if personal patient information wasn't so intimately involved in the job. Low pay, lots of cleaning and other work that no one else wants to do, and the very bottom of the totem pole. I've had to clean up pretty much every fluid out of every orifice from the human body.

One summer, I was working in one of the ICUs, and I helped take care of a patient who was recovering from heart surgery. I think she got a new valve in one of her heart chambers. She was 92 years old. What struck me about her was how lonely she seemed. Every couple of hours I and a nurse would go in to turn her so she didn't get bedsores, and I'd check her vitals every few hours, and clean her up if she needed it. And every day, the doctors would come by to check on her. But other than that, her human contact was minimal. She must have been in our unit for at least a month, and I never saw anyone come to visit her. We had other patients who were pretty sick, and they always had family nearby, to the point that the some of the family members knew our shifts better than we did. My shift was from seven in the morning to seven at night, and I did work some weekends. But I never saw anyone come in to visit her. Maybe they came when I wasn't around, late at night or on some of my off days. I don't know.

She also seemed . . . absent. She had all sorts of devices and tubes attached to her because she couldn't do most things for herself. I only saw her get out of bed once in the time I was with her. And she could barely communicate with the care team. She didn't watch TV or read books or listen to music. She did sometimes sing to herself, softly. Mostly, though, she just lay in bed, occasionally moaning.

A few weeks after taking care of her, she seemed to me to be getting better. She asked to get up to go to the restroom. Her color was a little better, and she seemed a little more alert.

The next day, maybe a day or two after that, she took a turn for the worse, and I saw a family member for the first time. She died shortly afterwards. She was the first person that I ever took care of who died, though not the last.

I remember thinking--at 17 or 19 or 21 or however old I was at the time--that I would never want to have my last month on earth be like that. It wasn't so much the cost of open-heart surgery and the month or so in the ICU, though that was considerable and troublesome to me. It was the lack of dignity, the lack of being myself, the isolation. I didn't feel that way about the other patients who died in the hospital in the time that I was a nurse's aide. Just that one.

In the months and years that followed, I recoiled at the idea of any 92 year-old getting a new valve in her heart. And then I wrote my senior thesis on rationing health care for the elderly, where I came to the conclusion that a flat out ban on care at certain thresholds is both unethical and not particularly helpful to the discussion of divvying out scare resources in health care. It was an interesting exercise to go through, because I had to justify my gut feeling with data, and I ended up discovering that I was wrong in making decisions for other people.

But I still instinctively feel that were a decision to be made for me regarding that sort of situation, I very much wouldn't want to die alone in a hospital, unable to do much more than lay there. And I think that everyone needs to go through that sort of thought process to figure out what sort "life" one wants to live. I'm not entirely convinced that the lady I helped take care of went through that process.