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Saturday, March 26, 2011

Still living her memoirs: Elizabeth Taylor, Saying No

Elizabeth Taylor lived large, in the moment. Late in life, after a variety of health problems, she chose not to undergo a back operation, saying she had already had a half-dozen and wasn't up to another one.

When she received yet another offer, late in life, to write her memoirs, she refused, saying, "Hell no, I'm still living my memoirs."

Advice: Live your life your way, and make your decisions accordingly.

Read about another person who said No to back surgery. Thanks to Mel Gussow for his source article in the New York Times of March 24.

Thursday, March 17, 2011

Her husband wasn't ready: Discussions about the end of life

Dr. Jeffrey Schnipper's story:

I see people die in horrible ways. It doesn't need to be that way! In 2011, it takes a lot of work to have a good death. The default is to not have one.

A few years ago, an elderly woman with a bad case of dementia came to our hospital for a cardiac problem. She couldn't verbalize what she wanted regarding her healthcare wishes. Her husband was not ready to let her go. He was her healthcare proxy. He and I met probably for an hour, every day, for a week. We went through the stages of grief together. By the end, he was willing to let her go.

She had a good death.

As a hospitalist, I view these discussions as a really important part of my job; so do other hospitalists. I sometimes get the chance to get the whole family together for long periods of time, which primary care providers can rarely do.

Residents tend to be very concrete about these discussions, asking, "Do you want chest compressions? Pressors? Dialysis?" And so forth. But that's not what the discussions should really be about. It should be more like, "Is your goal to get a cure? To get relief of symptoms? To be as functional as possible? To be kept alive at all costs? Would you like to die at home? What’s important to you? If you were no longer able to do [fill in the blank], would you want to be kept alive?"

Dr. Schnipper's advice: The earlier you can have these discussions, the better, so you'll have a reservoir to draw from. First, talk with your healthcare proxy, after you've chosen one, then with your primary care provider. Then, there are forms to fill out, living wills, healthcare proxies, and so on, as appropriate for the state you live in.

Read my father's end of life story.

Thanks to Dr. Schnipper for our interview of March 16.

Monday, March 14, 2011

I don't regret it: A kidney donor's pre-existing condition

Marci McKim's story:

I gave my husband a kidney in 2000 in the vain hope of keeping him alive until a match could be found (long story short). He never got the second kidney and died in 2002. I lost my corporate job in 2007 and have been unable to afford health insurance since then.

I don't regret the extra months of life I gave my dear husband; it was my pleasure to do so. But when I see articles about the lifesaving procedure today, I wonder why anyone would do it. Medicare covers the recipient, but the donors are left to the tender mercies of the health insurance industry, which considers us pariahs because we have a re-existing condition. If a live donor loses health insurance, there's no recourse.

Read a very different kidney donor story. Thanks to Marci for her letter to the editor of the New York Times on March 13, reprinted here.

Saturday, March 5, 2011

A smoke-making machine: My Don Berwick & his CMS Nomination

Twenty years ago, when my son was a toddler, my wife and I brought him with us to the National Forum of the Institute for Healthcare Improvement (IHI). He had a cold at the time, but was otherwise fine. As we checked into our hotel room, we saw Dr. Don Berwick, who was entering his own room next door. He said we could call him, even in the middle of the night, if needed, to come and take a look at our son. The gesture was doubly generous because no doctor can cure a cold; the visit would be for the purpose of reassuring us young parents. My son slept peacefully, so we didn't need to take up the offer of this internationally known pediatrician to make an unpaid house call.

Senators Orrin Hatch, Mike Enzi and 40 other Republican U.S. senators sent a letter to President Obama on March 3, asking the president to withdraw the nomination of Dr. Don Berwick as head of the Center for Medicare and Medicaid Services (CMS).

The letter cites four reasons. One is Don’s "lack of experience managing an organization as large and complex as CMS." CMS is the largest organization in the world, so only people who have already led CMS could have that prior experience.

The letter criticizes the President's nomination as "abrupt and unilateral." The Republican legislators' recent habit, of refusing to even formally debate many congressional matters via the filibuster, makes "unilateral" an example of the pot calling the kettle black.

Third, the letter cites Don's past record of "controversial statements." The most loudly voiced (though utterly ungrounded) Republican concern has been to "death panels." Don's father, himself a doctor, died in a nursing home. Don has long pushed hard to make treatment at the end of life – which some call "death by intensive care" – far more humane, via his leadership of the nonprofit Institute for Healthcare Improvement. Don has certainly made controversial statements over his long career in the midst of efforts to greatly change our healthcare system.

The final stated reason in the letter is Don's "lack of experience in the areas of health plan operations and insurance regulation." Before founding IHI, Don led a unit in a large pioneering health maintenance organization (HMO) that was really about health maintenance: Harvard Community Health Plan. (I'm proud to have worked in a sister unit there at the time.) Perhaps Don does not have experience in insurance regulation; I don't know.

Thus, these senators seem to be asking the President to bilaterally nominate someone who led CMS in the past, who has not made controversial statements. No such person exists, of course.

We have to assume that the senators made as compelling a case as they could. But there's no smoking gun here. There is smoke, however: the fact that so many senators agree is itself newsworthy. Well, where there's smoke, as they say, there's a smoke-making machine.

That machine has been quite busy lately. I hope that the President will use his training as a law professor to see the true crux of the senators' objections. Since the stated reasons in the letter aren't genuine, there must be some other reasons. My hunch is that these senators think Don has been, or will be, too effective. And that they must win at all costs, even at the costs of logic, and at the cost of depriving more than 30 million Americans of health insurance.

Read a story about President Obama's personal commitment to health care reform.