Showing posts with label speculative medicine. Show all posts
Showing posts with label speculative medicine. Show all posts

Monday, June 15, 2009

Meeting Dr. Dino


Today I sat around, trying without success to untangle the mess-o-yarn (which is, as I pointed out to Gary, a fitting metaphor for my life), and then went swimming for the first time since I've been here. Swimming felt great, except when I bashed my head against the end of the pool. The last time I did that was the week before Dad died. Tomorrow I leave for NYC, where, as Gary pointed out to me, I may be physically safer.

In the meantime, though, something really cool happened: I got e-mail from #1 Dinosaur saying, "You're in Philly? Want to meet up? It would be fun to put a face to the blog!" (Lest anyone be alarmed for my safety, my sister and I spoke to Dr. Dino on the phone several months ago, after I got an e-mail saying, "Your mom's in the hospital and homesick for pets? How about a visit from my dog?" That plan didn't work out, so we didn't meet in person, but Liz and I were fairly sure we weren't dealing with an axe murderer.)

The upshot of this was that the esteemed doc stopped by the house after dinner, and met Liz and Lloyd and Mom, and patted kitties and ate chocolate. We talked for three solid hours about blogging, writing, healthcare reform, American attitudes towards medicine, end-of-life care, cats, chocolate, family, grief, TV shows, and the challenges of running a personal practice. I can now happily report that #1 Dino is as funny and smart in person as in cyberspace. It was a terrific visit, and I hope we can do it again sometime.

One of the more interesting parts of the discussion was our debate about how to define "medicine." Dr. D. wanted to limit it to the scientific aspects, which would leave out many people on the healthcare team (chaplains, social workers, etc.). I wanted a broader definition. Okay, said Dr. D, what about breaking it into the art and science of medicine? Too blurry a dichotomy, I said. We didn't get the issue settled, but it's interesting food for thought.

Maybe the wider idea I wanted was simply 'healthcare," with science-based medicine a necessary but not sufficient component: true healthcare, in that model, is bigger than mere medicine, as essential as medicine may be. That's the best solution I can suggest right now, anyway. Healthcare incorporates science, art, policy considerations, economics, sociology, and any number of other disciplines. This leaves Dr. D's initial definition intact, but also makes medicine only part of the picture.

Anyway, it was a lively discussion, good for the brain. After Dr. D left, I watched TV with Mom and Liz. Tomorrow I'll do laundry and, i hope, swim again -- without mishap this time! -- before catching my train for Part II of the Great Adventure: New York City!

Stay tuned!

Saturday, March 22, 2008

A Simple Test


I was very interested last week to read this article about the discovery of a biomarker for depression. The discovery means that fairly soon, it may be possible to diagnose depression with a simple blood test, and also to determine if a given antidepressant was working. Many antidepressants take weeks to make people feel better, but the blood test would let doctors know long before that if the medicine was going to make the patient feel better.

As a depression patient, I'm delighted by this news. It will make diagnosis and treatment simpler and faster, and it should also quiet the nay-sayers who insist that depression is a character flaw rather than a physical illness. If this test had been available when I was first given a depression diagnosis, I wouldn't have had to listen to a dear friend say briskly, "You're not depressed. You're just lazy."

But then I thought further. I believe my current meds are working, which means that if I took the test today, the results would presumably be normal. I'd have to go off meds to find out if I really have depression. And what if those results were normal then, too? What if Science-With-a-Capital-S informed me that I don't actually have a physical illness, that I really am just lazy, malingering, or suffering from wrongthink?

Many people will rejoice at the advent of this test, but I wonder if anyone else is a little nervous about it.

Saturday, September 08, 2007

The Shadow Side of Progress


Here's something I've always wondered: How must it feel to be the last patient, or one of the last patients, to suffer from an illness before some amazing new treatment or cure comes along? How must it feel to be the friend or relative of one of the last people to die of a given condition before the advent of a life-saving therapy?

This photo shows two of the children who participated in the 1954 field trials of the Salk polio vaccine. It's from the archives of the Bentley Historical Library at the University of Michigan, and was displayed on a page celebrating the 50th anniversary of the vaccine. These kids look very happy, as well they should. Among other things, the Salk vaccine meant that they didn't have to be as worried about going swimming in the summer.

My sister was born in 1951, and my mother remembers worrying about polio. I was born in 1960, when we didn't worry about that anymore -- thanks to the vaccine -- although we still worried about other things. What a difference nine years makes!

If you or your child had polio before the Salk vaccine, how would it have felt to watch all those other kids getting their injections and knowing that they'd never have to suffer what you did? Surely you'd be happy for them, but wouldn't there be darker feelings, too: a shadow side of grief or regret, or even anger or envy? If only this had been available for us. A simple shot could have kept us from all that pain and agony. If only we'd had it when we needed it. If only we'd been born a year later, or it had been offered a year earlier. If only!

Here's another photo from the Bentley archives, this one from a page about polio survivor Andrea Lael Cappaert. Andrea was born in 1952 and contracted polio when she was three years old; here, clearly older than three, she's in an iron lung, being visited by her parents. Andrea's mother wrote a memoir of her daughter's illness. It's titled And God Said No.

Andrea was born in 1952 and became ill with polio in 1955. The Salk vaccine was in field trials in 1954, but according to this timeline, it was only tested on children ages six through nine. Infants and toddlers weren't yet being vaccinated, even though they were the most susceptible group. How must Andrea's parents have felt, knowing that a vaccine was available, when their daughter got sick, that could have spared her, if only she'd been considered a suitable candidate for it?

There must be many stories like this.

Think about all the people who suffered terrible infections before the discovery of penicillin.

Think about all the people who died of organ failure before transplants became possible.

Think about everyone unable to benefit from artificial joints, dialysis, or new regimens of AIDS drugs, for no reason other than a fluke of timing. It came too late for us.

Everyone I know who has a disease or chronic medical condition fervently wants biomedical researchers to find answers: treatments, cures, preventive measures. Many people in this category do whatever they to bring this about, raising money and awareness by walking, running, writing letters, starting foundations. Surely they'd rejoice if their dreams came true, even if they were unable to benefit from the new discoveries. Surely Andrea Cappaert's parents would not for a moment have begrudged any other child the protection of the vaccine.

But surely they also must have dreamed of what their own lives, what their daughter's life, would have been like if only the miracle had come in time.