Rationing Health Care

I'm back from a lovely weekend, visiting my sister Susie and her husband Bob in Takoma Park, Maryland, and taking in the fireworks display in our nation's capital--a little muted by low-lying clouds (aka light rain), but maybe that's some sort of metaphor for our times.

Susie and I spent much of my visit viewing reels and reels of 8 mm movies, taken by our father, Alex, between about 1950 and 1966. So many birthday parties (there are four of us Strasser girls) and miniature train rides and pony rides at the Pittsburgh Children's Zoo and children (including some totally unrelated Dutch kids in Amsterdam) on swings! And a lot of really, really bad photography. This is not art; more a kind of obligatory "this is what fathers do" documentation of mid-twentieth-century family life.

But thinking about Alex, combined with reading a long article about the high--perhaps socially indefensible--cost of a new cancer drug in Sunday's New York Times, led me to muse, once again, about the cost of health care. More specifically, on the question of how much extension of whose life is worth how much money.

When my dad was in the hospital in Madison in the fall of 2002, being treated (unsuccessfully) for a staph infection that he contracted after hip surgery, he was quite adamant that I should read a particular book that presented the argument for rationing health care, spending more on pregnant woman, infants, and toddlers and less--much less--on the elderly. The book pointed out that, in our present system, by far the lion's share of expenditures goes toward keeping old people alive for the last six to twelve months of their lives.

My father, who was 84 at the time, was quite explicit about his belief that the focus on keeping old people alive was an abomination. He, himself, had a living will and a healthcare power of attorney, and made it clear to his wife and his daughters that he did not want any extraordinary measures taken to prolong his life. When he was trying to refuse a diagnostic CT scan on the grounds that it was too expensive a procedure for a man his age, I remember saying, "That may be good social policy, but we're not talking policy reform here. We're talking about you." He finally gave in.

(Despite his resistance to extreme--or even not so extreme--medical treatments, and his careful advance directives, he was subjected to resuscitation efforts that left him severely disabled after his heart stopped and his brain was deprived of oxygen for more than fifteen minutes. We had to argue with the hospital to withdraw life support--an argument that, ironically, we won only after I described to the chair of the ethics board how intensely my father insisted that I read the book about rationing health care. But that's another story.)

The Times article reminded me of that argument about the CT scan, and about the different perspectives that even a single person (like me) might have about rationing health care. The article raised the question of whether it makes sense to spend as much as $50,000 or $100,000 for a cancer treatment that may only extend a patient's survival by four months. In the scheme of things, four months is a tiny amount of time, a tiny fraction of a normal life span. Like Alex, I really do think it makes much more sense to invest that kind of money in prenatal and early childhood care--and even on young adults who can expect many more years of productive life--than on terminal cancer patients. But as a cancer patient who has now outlived her prognosis by four months thanks to very, very expensive treatments paid for by insurance and by the American taxpayers who fund Medicare, I can tell you that every good month--heck, every good day--is precious. (So thanks, you taxpayers out there.) And even if I didn't have cancer, I and many of my friends have already passed the arbitrary magic number--60, or 62, or 65--that in many rationing proposals would make us ineligible for open heart surgery or other very expensive treatments. That's a much more sobering reminder of mortality than becoming eligible for Social Security or Medicare.

In the long run, I suspect that rationing health care may be necessary. (In fact, one can and probably should argue that rationing exists now, determined by the market: poor and uninsured people don't get treated; wealthy and insured people do.) But "official" rationing, and the difficult decisions and heartache it will necessitate, can at least be delayed if we take a hard look at cutting health care costs. I recommend the Times article (available here), which explains some of the reasons for the outrageous cost of cancer drugs, as one place to start educating yourself on this issue. And then you might investigate the cost-saving advantages of a single-payer insurance system. They're considerable.

Travel

This past week, I discovered a new way of thinking about my health: assessing my desire to get out of town! Last October, when I was having a lot of trouble breathing, and more trouble than I now have just talking--when I was spending so much time in various clinics that I felt like a professional patient--I decided that leaving Madison for a few days a month was really essential. It made me feel much better to be someplace where I had no doctors' appointments, and where I could at least pretend that I was "normal," not a sickie. So I plotted my escapes, and made them--to DC and Boston, Zion National Park and Los Angeles, the Virgin Islands, Arizona....

But this past week, when I was thinking about another trip east in early April, I realized I'd done enough traveling. The trips themselves have all been great, but each one requires at least a few days of getting ready to go and then catching up on mail, email, errands, etc. when I get back. And I realized that I've been out of town at least five days a month every month since August. (And although I think I was here most of July, I know I was gone for at least five days each last June, May, April....) When I added all that time up, combined with the preparation and catching up times, and took into account the four days/month I'm pretty much out of commission because of chemotherapy, it suddenly became clear why I never get anything accomplished around here! And as my energy slowly returns, I really do have the desire to accomplish something (though I couldn't say what, other than organizing some files and writing some dates in photo albums) rather than be on perpetual vacation! So I take it as a sign of good health that I don't want to go anywhere, at least until the end of May, when Robin Chapman and I will be teaching our class at The Clearing in Door County.

Of course, it could just be a sign that winter seems to be losing its relentless grip, and the temperatures in Madison this week are predicted to go into the high 30s, and maybe even 40s!

And on March 21, after my next CT scan, Dr. Holen and I will figure out if I can take a vacation from chemo this summer, and when-- and you may be sure that if I'm let off of that tether, I won't be hanging around here for the entire time!

In the meantime, I'm happy just to stay in Madison and watch the snow and ice gradually disappear.

Chemo benefits--and cost

Hello blog-readers! I'm delighted to report that the CT scan I had yesterday showed that, as I thought, the chemo is working to shrink the tumors, at least a little. I feel so much better than I did in mid-September, before I started back on chemo, that I thought it had to be working. In fact I was so un-stressed-out about seeing the oncologist this time that my blood pressure was only 116/60, or something ridiculous like that. But it was nice to have it confirmed.

But the cost! Forget about side effects-- I mean the dollar cost of this therapy (oxalyplatin, for those who like details). I learned today that it is $14,000 per month! It's entirely covered by insurance--Medicare, in my case. But it's kind of breathtaking to think about whether one's life is "worth" so much money. When my father was in the hospital, just before he died, he was adamant about refusing even relatively routine tests--a CT scan of his head, I think was one--on the grounds that we spend way too much money on the last six months of life, and it would be money much better directed toward prenatal and infant care so that perhaps the US would join other developed countries in reducing infant mortality. My dad was adamant that I read a book he'd just read on the subject of rationing health care in this way.

At the time, of course, I said, "But you're talking about public policy, and we're talking about you. Two different things." And of course they are two different things--and I'm not going to stop chemo that's improving my quality of life, just to save Medicare $14,000 a month that wouldn't go to prenatal or infant care anyway. But it did give me pause.

And I'd be very interested in your comments on this. You don't need to be a "member" of anything to comment. Just hit the comment button and post your reaction. I will be moderating the comments, but be assured that anything you say about this will be published.

And hey-- thanks for paying your taxes and contributing to my improved health!