Learning from Elizabeth Edwards

By David Casarett

Even before the news of Elizabeth Edwards' death became public last week, many people told me they admired the choices she made during the last days of her life. It seems she had an honest talk with her physicians about additional treatment options. She asked the right questions and weighed the answers. Finally, having determined that the burdens of further treatment would probably outweigh any benefits, she decided to focus on being as comfortable as possible and spending her remaining time with her family.

"Good for her," I've heard people say. And, "That's just what she should have done." And, most tellingly, "That's just what I would do."

The choices Edwards made are indeed consistent with how my patients say they want to spend their last days. They're also consistent with the findings of numerous studies of how people want to spend the end of their lives.

We all want to avoid unnecessary suffering. We want to maintain as much dignity and control as we can. We want to spend time with friends and family in a familiar setting - which, for most of us, means at home. And, above all, we don't want to be in the hospital a day more than we have to.

So Edwards' decision to forgo further treatment and go home reflected what most of us would want. It allowed her to spend time with friends and family in a setting she chose.

We should all be so lucky. The difference between Edwards and many of us is that she was able to make her preferences known and get the care she wanted. Many patients in the advanced stages of illnesses such as cancer continue receiving aggressive treatment until the very end of their lives. While Edwards was able to go home, most people today die in hospitals or nursing homes.

So why can't most of us expect our last days to be like Elizabeth Edwards'? The answer is complex.

Many of us will be misled by unreasonable hopes. Many of us won't have the chance to openly and honestly discuss our goals with our physicians. And it doesn't help that many of us think hospice - which makes it possible for people to get care at home - hastens death. That simply isn't true, but the misperception persists.

There's also a widespread belief - particularly common when it comes to cancer - that stopping treatment amounts to "giving up." We need to fight, we're told; only fighters survive. The view is that if there's something courageous about fighting cancer, then there must be something cowardly about stopping treatment.

But Edwards must have ultimately realized, just as many of my patients do, that the choice to forgo further treatment is actually a deeply courageous one. It's a decision to take control over one's care. And it's a decision to take back one's life.

How did Edwards manage to die on her own terms when so many others don't? I don't know. But I do know that she almost didn't.

When people praise Edwards' decision to forgo further treatment, they don't often mention its timing. They don't mention that she died only a day or so after she announced the decision on Facebook.

Just one day - one day to spend time at home with your friends and family; one day to live the end of your life the way you want to.

Although I admire Edwards' struggle with cancer and respect her decision to forgo treatment, I hope my own patients can make that choice a little sooner than she apparently did. I hope they can make it soon enough to be able to do the things they want to do and say the things they need to say. And I hope they can make it while they still feel well enough to make the most of the time they have.