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.
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The subject of end-of-life care erupted into controversy during the debate over the health care overhaul. Inflammatory talk about so-called death panels ended federal plans to pay doctors to talk with patients about their medical options as they die. In Oregon, doctors and patients are already accustomed to having those conversations because of the state's physician-assisted suicide law. And the state has expanded the ways patients can dictate medical care at the end-of-life.
That story from Kristian Foden-Vencil of Oregon Public Broadcasting.
KRISTIAN FODEN-VENCIL, BYLINE: Terri Schmidt, a doctor at Oregon Health and Science University, will never forget the day an elderly man from a nursing home arrived in her E.R. with heart failure.
DR. TERRI SCHMIDT: I intubated the man. I did very aggressive things. It didn't feel right at the time. There was just this sense in my mind that this is a 92-year-old, very elderly person with bad heart failure.
FODEN-VENCIL: She reached the family on the phone 15 minutes later.
SCHMIDT: They said, you did what? We talked about this. He didn't want it. We had a big conversation in his room a week ago.
FODEN-VENCIL: The man hadn't fill in the medical directive form, so by law, Schmidt had to provide all the medical care possible. But Oregon has been aggressively trying to stop such situations happening. In fact, most states have end-of-life medical directive forms now. But they're often limited, offering only simple options like do or do not resuscitate.
And, says Schmidt, end-of-life decisions are seldom that simple. The Oregon form offers an array of choices
(SOUNDBITE OF DIAL TONE)
FODEN-VENCIL: Helen Hobbs is 93 and lives in an assisted living facility in Lake Oswego.
(SOUNDBITE OF A RINGING PHONE)
FODEN-VENCIL: Hi, Mrs. Hobbs. This is Kristian.
HELEN HOBBS: Yes, I'll buzz you in. I'll press nine and then the door will be unlocked.
FODEN-VENCIL: Age has bent Hobbs low and she uses a walker.
HOBBS: Death is part of your life. You know you're going to get there some day and let's make it as pleasant as possible.
(SOUNDBITE OF LAUGHTER)
HOBBS: I mean, there's no point prolonging, you know? I mean, would you like to stay in, you know, in an unconscious condition for years while people kept you alive with feeding and hydration tubes? No.
FODEN-VENCIL: Hobbs outlined her end-of-life medical decisions on Oregon's form a couple of years ago, after a serious surgery. It's signed by her doctor, so it's legally enforceable. Reading it, she says she likes the fact that it offers a lot of different options.
HOBBS: Yeah, I did want antibiotics in case of infection. 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. I mean, death can be natural and it's not that bad.
FODEN-VENCIL: The assisted living facility told her to keep her form in a plastic tube in her freezer, so EMTs will know where to find it. Other places tell residents to keep their forms under the sink or on the fridge. It's not exactly a perfect system. So, a few years ago, the Oregon legislature set up a new database. Now, EMTs and doctors can call the state to see if someone wants to be resuscitated.
And the database is also beginning to generate some interesting facts about the medical interventions people want as they die. Dr. Susan Tolle is with the Oregon Center for Ethics in Health Care.
DR. SUSAN TOLLE: We have really learned that this is not a black and white process; that less than 10 percent of people wanted to refuse all treatments; that a majority wants some things and not other things.
FODEN-VENCIL: Tolle says Americans in death are the same as Americans in life - they want options. They want to be able to decide if they want a feeding tube, an oxygen mask or just pain medication. Oregon's end-of-life form has other benefits, too - it can save a lot of money.
Take the case of Wanda Pucket from eastern Oregon. Despite being 85 and very sick, she was airlifted to a distant hospital, given extensive surgery and kept alive for days before she died. Her daughter, Kaye Hanni estimates the whole thing cost taxpayers close to $100,000.
KAYE HANNI: She would be so upset if she knew that kind of money was spent on her. I am not even kidding you. Yes, we want to be humane. And yes, we want people to treat us with respect. But is respect that kind of aggressive care?
FODEN-VENCIL: Pucket did have an end-of-life directive, but she died before Oregon had a database for the directives and nobody knew where the paperwork was. So again, she received all possible medical attention.
You might expect supporters of Oregon's end-of-life form, like Dr. Susan Tolle, to point out its money-saving benefits. But she won't. She's worried about more talk of death panels. But she has done a study on the effect of the forms.
TOLLE: 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.
FODEN-VENCIL: That means that in Oregon alone, end-of-life forms probably saved taxpayers tens of millions of dollars a year. Still, there are people who don't like the form.
Christian Brugger is a professor of moral theology at the Saint John Vianney Seminary in Denver.
CHRISTIAN BRUEGGER: I've heard often that elderly patients can feel pressured by the medical community or by their family not to be a burden. Not being a burden would be to direct to have, you know, life preserving procedures removed if they get to be in a particular kind of disabled state.
And I think that 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.
FODEN-VENCIL: Brugger says giving a family member or friend a durable power of attorney is a much better solution to this delicate issue.
(SOUNDBITE OF MUSIC)
FODEN-VENCIL: Back at the nursing home, Helen Hobbs listens to a CD of her son's band. She says she filled in her form to make sure he doesn't have to make difficult decisions as her life ends. She was grateful her husband had made his decisions known before he died.
HOBBS: When somebody is unconscious and is not going to get better, it's kind of silly to put them on a feeding tube.
FODEN-VENCIL: And was that option given to you with your husband?
FODEN-VENCIL: And you decided not to put him on a feeding tube. How did you feel about that decision?
HOBBS: I felt perfectly happy about it because we had talked about it together many times, you know, and neither one of us wanted that kind of treatment.
FODEN-VENCIL: She says her sons were a little less convinced, but they came around.
A version of Oregon's end-of-life form has been adopted by 14 states now, another 20 are considering it.
For NPR News, I'm Kristian Foden-Vencil in Portland.
BLOCK: The story is part of a reporting partnership that includes Oregon Public Broadcasting, NPR and Kaiser Health News. Transcript provided by NPR, Copyright NPR.