LIVING WILL LETS CANCER PATIENT AVOID AGONY.

Byline: Michael Gougis Staff Writer

SANTA PAULA - When Doris Schmidt dies - something she knows disease will bring about soon - no judge will be involved, no legislator will introduce a bill, no governor will intervene.

Schmidt's death will be on her terms. She's made sure of that.

From the hospital bed set up in her living room, Schmidt makes her own decisions about how much doctors will be allowed to do to resuscitate her, how to treat the diseases ravaging her 71-year-old body and where she will spend her final days.

The longtime Santa Paula resident even decided to keep her family - particularly her children - out of the decisions when she made her living will protecting her right to die with dignity.

``Why let them have to make that decision?'' she says. ``I don't think it's fair to them. I did this all on my own. I don't want them to have to live with that.''

As lawyers, judges, politicians, right-to-die and right-to-life groups battle over the legal and ethical issues swirling around the life and death of Terri Schiavo in Florida, the nation once again is focused on questions of dying and quality of life.

More than ever, as the nation's population ages, Americans are turning to legal documents to create an exit strategy, to ensure they do not end up in a medically supported limbo, wired and intubated, with no end in sight.

And increasingly, evidence shows, people are looking beyond the question of how long they'll remain alive, and trying to answer questions that a generation before us rarely dealt with - at the end of their lives, how well will they live? How well will they die?

Aging population

California's population is aging rapidly, and the rate of aging is only going to increase in the near future.

In Los Angeles County, the population age 60 and older is expected to increase by more than 97 percent between 1990 and 2020, Census data shows. And the county's population of those 85 and older is expected to more than double in the same time period.

Other evidence shows that strategies for dealing with end-of-life issues are gaining acceptance:

--Recent surveys by the AARP and the National Council on Aging indicate that between 70 and 80 percent of those groups' members favor having living wills.

--The Death With Dignity National Center, a right-to-die advocacy group, says 80 percent of its members have living wills or similar legal documents.

--Vitas Innovative Hospice Care, a national company that cares for patients at several San Fernando Valley hospitals, had about 1,500 patients nationwide on any given day in 1989. By 2003, that figure had gone up to more than 7,000.

--Hemlock Society founder Derek Humphry's book ``Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying,'' spent weeks on the best-seller charts, and a new edition released a year ago currently sells 1,400 copies a month in North America alone.

--Aging With Dignity, a Florida-based organization that sells its ``Five Wishes'' living will document online, said in 1999 that 100,000 Americans had requested the document. By this year, the figure had risen to 3 million.

Experts say that slowly, people are coming to terms with the reality that science can keep them alive longer than, perhaps, they want to be alive. Fifty years ago, virtually no one grappled with what to do with a parent or relative in a persistent vegetative state.

But high-profile medical cases - starting with the Karen Ann Quinlan case of the 1970s - and the AIDS crisis, which experts said irrevocably altered the perception of end-of-life care, began to drive the issue home.

Dr. Janet Pregler, director of the Iris Cantor Women's Health Center at University of California, Los Angeles, can recall her time in emergency rooms during the 1980s, when the debate over a meaningful quality of life hadn't yet caught up with new technologies that could keep people alive who otherwise would die.

``I literally had senior physicians tell me that if I let a patient die that I could have kept alive one more day that I would be no better than a Nazi,'' Pregler said.

Still, patients, their families and their doctors are still catching up to the technology available to them and its implications.

``Physicians need to understand what the patient's definition of what 'meaningful' is, what the patient would have wanted,'' Pregler said.

``Today, patients are better able to tell us what they want because they've had experience with end-of-life issues. People come in and say, 'This is what I want for me.' They're able to talk in terms of good death and bad death.''

Doris Schmidt

Schmidt, who first moved to Santa Paula 47 years ago, demonstrated her crusty nature recently when one of her hearing aids went out: ``Why spend $3,000 on another one when I'm just gonna die anyway?''

The mother of four has lung cancer, osteoporosis, spinal compression fractures, aortic valve troubles, asthma, emphysema and chronic obstructed pulmonary disease.

``Oh, yeah, and I have leukemia, but I don't worry about it so much,'' she said in a recent interview at her home.

Schmidt breathes with the help of oxygen and a nebulizer, which she uses four times a day. She can still walk by herself, but just barely. Most of the time, one of her sons or her daughter helps her to the restroom or the chair in her living room that's closer to the TV.

In July, she was hospitalized for five days. Her bronchial tubes had closed down, leaving her incapable of breathing. Paramedics rushed Schmidt to the hospital.

When her doctor showed up, she recalled, ``I felt so bad, I just put my head on his shoulder and said, let me die.''

She got through that crisis. But she made some decisions then and there.

``My doctor told me that he really couldn't do anything more for me,'' she said. ``I could have stayed there. I could have gone into a nursing home.

``But I didn't want any extraordinary measures, no surgeries, no holes cut into my throat. I didn't want chemotherapy. Why go through all that pain, that nausea, the diarrhea, just to live another three months, six months at most? No thank you. You keep it.''

Schmidt contacted Assisted Home Hospice in Thousand Oaks, who helped put together a care plan to keep her comfortable and happy until she dies. Her kids take turns watching her, being at home with her. Her daughter, Susie, has Doris, a reader by preference, hooked on afternoon soap operas.

``I prefer to be here, in my own home, where I can read, watch TV, cuss and yell at people, rather than lay in some senior home with a bunch of old ladies taking sleeping pills. And I'm gonna be in the main room. I'm gonna be the queen bee.''

It's not always easy.

Schmidt's son Joe, 48, who splits his time between Colorado and Santa Paula, doesn't like the idea that he may be alone with his mother at the end, but he accepts her decision.

``Look, it's (miserable) for anyone to go through this. It's hell. But what are you going to do - sit around, light a bunch of candles and chant? Nobody walks around here moping. Everyone thinks it's like living with Dr. Kevorkian. But it's not like that at all.''

Schmidt is a practical, down-to-earth Midwest woman who taught her kids a similar approach to life, and at the end, they're dealing with her death the same way.

One recent morning, Susie, at home for lunch during a break at the school where she works, offers her mom some macaroni salad.

``Why didn't you bring me the cheesecake?'' Schmidt snaps.

And laughter - loud, honest laughter - fills the room where Schmidt is most likely going to die.

``I am so grateful that they're close enough that they can be with me,'' she says.

Living wills

Still, society struggles with end-of-life issues.

While the AARP and aging council polls show that 70 to 80 percent of their members approve of living will-type documents in concept, only 20 to 30 percent of them actually have executed the document. A 2002 study of nursing home residents found that only 20 percent had a living will.

Oregon remains the only state allowing physicians to assist a patient who wants to die - and the Bush administration's Justice Department is challenging it in court again.

Federal and state reimbursements for hospice care are constantly under attack. And doctors still struggle to deal with patients refusing medical care.

Schmidt, who is long separated from her husband, who lives in Colorado, said that even after she signed a living will, her primary doctor made her sign yet another document, detailing the medical care that she did not want.

``Even when you want out, sometimes you have to fight your way out,'' said Michael H. White, a Valley attorney and board member of the Death With Dignity National Center.

But because of cases like Quinlan's, every state in the nation recognizes some form of living will. And more and more people are turning to them; unpleasant as it may be to consider, the alternative, as is playing out in Florida, is even worse.

``It's going to take years to change a culture that is still looking for a magic pill that will keep us alive forever,'' said Holly Swiger, Ph.D., public affairs director for Vitas Innovative Hospice Care, who is a registered nurse and nationally recognized expert in hospice and end-of-life issues.

``We're trying to change the whole culture to be more accepting of death. People want control, so that they know that their wishes are met.''

Michael Gougis, [phone]

michael.gougis(at)dailynews.com

CAPTION(S):

2 photos

Photo:

(1 -- color) Doris Schmidt suffers from lung cancer, among other ailments, but has chosen to skip chemotherapy and stay home.

(2 -- color) - Doris Schmidt

Michael Owen Baker/Staff Photographer