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5 Years After Terri Schiavo: What Have We Learned?

More than ever, we need Congress to take end-of-life care seriously. We still need legislation that will encourage physicians to take the time to talk to patients about the choices that are available to them.
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Wednesday, March 31, marks the fifth anniversary of Terri Schiavo's death. Five years ago, as a protracted legal battle riveted the nation's attention, lawyers, medical experts, judges, and legislators all became involved. Private family dramas unfolded behind closed doors, while a very public drama played out in the media and on the front lawn of the hospice where Terri lay dying.

Now that the dust has settled and tempers have cooled, it's a good time to take stock, and to ask what we've learned from that very public event. Have we, as a nation, become more thoughtful about end-of-life decisions? What have we done to prevent such public catastrophes in the future? To answer these questions, we needn't look any further than the "death panel" debates of the past year.

As a palliative care physician, I was fascinated, amused, shocked and embarrassed, in more or less equal measure, by the myths that circulated about end-of-life care. I was fascinated, for instance, by how outlandish some of them were. And I was amused that a few people seemed to take them so seriously. But I was shocked at how vocal those people were. And I was embarrassed that instead of engaging in a thoughtful dialogue about how we die, and how we should die, for several months we were immersed in a shrill shouting match about issues that bear no relation to the reality that my patients and I face every day. In short, as that public debate was unfolding, I felt very much the same way that I felt as the nation watched Terri Schiavo's story reach its conclusion in 2005.

And that reflection is ironic, because the advance care planning legislation that sparked the death panel debate was designed to prevent the sort of family disputes that made Terri's care so difficult. But what should have been an unobjectionable provision in the health care reform legislation quickly became mired in partisan rhetoric and outlandish rumors. A straightforward mechanism to promote choice and autonomy was quickly reframed as precisely the opposite. Looking back on those events, it's difficult to believe that we're any closer to an open dialogue about death and dying than we were five years ago.

In fact, a dialogue may be even less attainable now. As if the "death panel" label weren't destructive enough, recent health care reform discussions have linked end-of-life care to cost-savings and rationing. So whereas five years ago the public was afraid that family members might "pull the plug," now those fears have focused on Congress.

It's no surprise, then, that Congress has shied away from end of life care. As a result, advance care planning was never given the consideration it deserved in the Senate bill and eventually dropped out of sight. In fact, it's unlikely that we can expect any meaningful end-of-life care legislation from Washington in the foreseeable future. End-of-life care has proven to be too divisive, and too politically dangerous.

And that's too bad, because now more than ever, we need Congress to take end-of-life care seriously. At a minimum, we still need legislation that will encourage physicians to take the time to talk to patients about the choices that are available to them. That wouldn't prevent a recurrence of the Schiavo case, but it's an essential first step.

There are other issues that Congress should address, too. For instance, we need legislation to update the Medicare Hospice Benefit, which pays for the hospice care of more than one million people every year but has remained essentially unchanged for more than 25 years. Congress should also take steps to ensure that the hospitals, hospices, and nursing homes that care for patients like Terri are held accountable for the quality of care they provide.

The chief lesson of Terri Schiavo's death, if we'd been paying attention, was that we can't afford to ignore end-of-life care. Nor can we afford to let Congress do so. We will all need high-quality end-of-life care eventually, and we'll all want to receive treatment that is consistent with our preferences. High-quality care at the end of life is as important now as it was five years ago, and it's time to take it seriously.