It turns out Americans facing death want something they also want in life: choice.
A two-page form created in Oregon is providing insight into how people want to be cared for at the end of their lives. And the so-called POLST form — short for Physician Orders for Life-Sustaining Treatment — offers far more detailed options than a simple "do not resuscitate" directive does.
Terri Schmidt, an emergency room doctor at Oregon Health and Science University, remembers the day an elderly man with congestive heart failure came into the hospital from a nursing home. The man didn't have a form, so, by law, Schmidt had to provide all the medical care possible.
"I intubated the man. I did very aggressive things. It didn't feel right at the time," says Schmidt. "There was just this sense in my mind that this is a 92-year-old very elderly person with bad heart failure. And about 15 minutes later, when I was able to get a hold of the family, they said, 'You did what? We talked about this! He didn't want it. We had a big conversation in his room about a week ago.' "
That's a situation Helen Hobbs, 93, is looking to prevent. She has filled out a form, and her doctor signed it, so it's legally enforceable.
She likes having different options. "I did want antibiotics in case of infection," says Hobbs, who lives in an assisted living facility in Lake Oswego. "I don't want CPR if I'm in cardiac arrest. I don't want to be tied down with tubes. You know, there's no point in prolonging it."
Administrators at her senior residence advised Hobbs to keep her POLST form in a plastic tube in her freezer, so EMTs will know where to find it. Other nursing homes tell residents to keep their forms under the sink or on the fridge. It's not exactly a perfect system.
Oregon started using the POLST form widely in the mid-1990s. All told, 14 states have adopted it, and 20 more are considering it.
Since 2009, the forms in Oregon have been entered into a statewide database. Doctors there can go online to see whether a patient has one.
And the database is beginning to reveal some interesting information about people's choices, according to Dr. Susan Tolle of the Oregon Center for Ethics in Health Care. "We have really learned that this is not a black and white process," Tolle says. "Less than 10 percent of people wanted to refuse all treatment. A majority want some things and not other things."
Tolle avoids the topic of whether these detailed end-of-life instructions save money. She's wary of starting another debate about death panels. But the database has allowed the state to quantify the policy by some measures.
"What we found was that if people marked 'comfort measures only' and 'do not resuscitate' and did not want to go back to the hospital, there was a 67 percent reduction in life-sustaining treatments, primarily hospitalization and emergency room visits," says Tolle.
Christian Brugger is a professor of moral theology at the Saint John Vianney Seminary in Denver. He wants to make sure the elderly do not feel like they have to have one of these forms.
"I've heard often that elderly patients can feel pressured by the medical community or by their family not to be a burden," says Brugger. "I think those kinds of pressures are very hard to calculate. And we want to be very careful that we don't put those kinds of pressures on the elderly."
Brugger says giving someone a durable power of attorney is a better solution to this delicate issue.
This story by Kristian Foden-Vencil is part of a reporting partnership that includes Oregon Public Broadcasting, NPR and Kaiser Health News.
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