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The End-of-Life Imperative

The president brought it up himself. He talked seriously to a New York Times reporter in May about end-of-life health care choices--the tremendous drain they...

The president brought it up himself. He talked seriously to a New York Times reporter in May about end-of-life health care choices--the tremendous drain they impose on the public purse and on the decisions a family has to make. But he was more personal than that. He talked about his grandmother's last few weeks of life, late in 2008. Terminally ill with cancer, she fell and broke her hip. Her doctor advised her--and her family--to consider a hip replacement operation. The choices went like this: Because of the cancer, she had three to nine months to live. Because of the weakness of her heart, a hip-replacement operation would be risky--she might not survive it. On the other hand, if she didn't have the surgery, the quality of her already numbered days would be terrible.

She opted to have the surgery. Just a few weeks later, she died.

Should the operation have been performed? Should Medicare foot the bill for that kind of care for someone who's nearing the end of a terminal illness?

Barack Obama's answer to the Times pretty much covered the conflicts all of us face--if not personally, then as a society: "I don't know how much that hip replacement cost," he said. "I would have paid out of pocket for that hip replacement just because she's my grandmother. If somebody told me that my grandmother couldn't have a hip replacement and she had to lie there in misery in the waning days of her life--that would be pretty upsetting."

The issue, of course, isn't just hip replacements. The costs of end-of-life care--most of it for procedures incurred in hospital intensive care units--are horrendous. They account for more than 25 percent of Medicare's $500 billion budget. And often, the measures taken are futile and unwanted by the patient.

If costs are the heart of the health care dilemma--and few dispute that they are--then end-of-life care needs to be part of the discussion. It's a point U.S. Senator Ron Wyden has been making for years. He's been calling for a public discussion of the trade-offs that we face. Wyden's home state, Oregon, used the public-discussion approach 15 years ago when it tried to control its Medicaid bill by setting priorities for which services would and would not be covered by its public insurance program.

Given that background, it should not be surprising that Oregon once again is trying to tame the high cost of care, and this time, is particularly looking at end-of-life care. It isn't a revolutionary step. Just a small one that moves the ball a little bit forward.

A bill passed by the Oregon legislature in June creates a health authority charged with overseeing strategies to contain costs. Part of its role will be to oversee the creation of a statewide registry for end-of-life care. The voluntary registry would be for those who have filled out Oregon's "Life-Sustaining Treatment" form. This form, available in 24 other states, allows people to dictate how much care they would want in an incapacitating emergency. Patients can say, for example, whether they wish to be resuscitated, put on a respirator or fed through a tube.

This may not sound like a big deal. But a survey by the Oregon Health & Science University found that in one in four cases, emergency workers couldn't find the forms in time and gave some people more care than they wanted. The new registry would give emergency workers immediate access to patients' wishes.

Oregon's law doesn't set any rules about end-of-life hip replacements, or determine Medicare's responsibility to pay for them. But for those in Oregon facing a situation where care for a close relative might be futile or needlessly life-prolonging, at least they'll know what their loved one's wishes are--and so will the health professionals overseeing their care. It's a start.

Penelope Lemov is a GOVERNING correspondent. She was GOVERNING's health columnist and was senior editor for several award-winning features.
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