Posts Tagged ‘Oregon’

Aug 20, 2012Review of aided dying reveals surprise

By Katie Hafner
The Sacramento Bee
August 11, 2012

Dr. Richard Wesley has amyotrophic lateral sclerosis, the incurable disease that lays waste to muscles while leaving the mind intact. He lives with the knowledge that death is chasing him down, but takes solace in knowing that he can decide exactly when, where and how he will die.

Under Washington state’s Death With Dignity Act, his physician has given him a prescription for a lethal dose of barbiturates.

He would prefer to die naturally, but if dying becomes protracted and difficult, he plans to take the drugs and die peacefully within minutes.

“It’s like the definition of pornography,” Wesley, 67, said at his home in Seattle. “I’ll know it’s time to go when I see it.”

Washington followed Oregon in allowing terminally ill patients to get a prescription for drugs that will hasten death. Critics of such laws feared that poor people would be pressured to kill themselves because they or their families could not afford end-of-life care. But the demographics of patients who have gotten the prescriptions are surprisingly different than expected, according to data collected by Oregon and Washington through 2011.

Wesley is emblematic of those who have taken advantage of the law. They are overwhelmingly white, well-educated and financially comfortable. And they are making the choice not because they are in pain but because they want to have the same control over their deaths that they have had over their lives.

While preparing advance medical directives and choosing hospice and palliative care over aggressive treatment have become mainstream options, physician-assisted dying remains taboo for many people. Voters in Massachusetts will consider a ballot initiative in November on a law nearly identical to those in the Pacific Northwest, but high-profile legalization efforts have failed in California, Hawaii and Maine.

Oregon put its Death With Dignity Act in place in 1997, and Washington’s law went into effect in 2009. Some officials worried that thousands of people would migrate to both states for the drugs.

“There was a lot of fear that the elderly would be lined up in their RVs at the Oregon border,” said Barbara Glidewell, an assistant professor at Oregon Health and Science University.

That has not happened, although the number of people who have taken advantage of the law has risen over time. In the first years, Oregon residents who died using drugs they received under the law accounted for one in 1,000 deaths. The number is now roughly one in 500 deaths. At least 596 Oregonians have died that way since 1997. In Washington, 157 such deaths have been reported, roughly one in 1,000.

In Oregon, the number of men and women who have died that way is roughly equal, and their median age is 71. Eighty-one percent have had cancer, and 7 percent ALS, which is also known as Lou Gehrig’s disease. The rest have had a variety of illnesses, including lung and heart disease. Statistics in Washington are similar.

There were fears of a “slippery slope” – that the law would gradually expand to include those with nonterminal illnesses or that it would permit physicians to take a more active role in the dying process itself. But those worries have not been borne out, experts say.

n both Oregon and Washington, the law is rigorous in determining who is eligible to receive the drugs. Two physicians must confirm that a patient has six months or less to live. And the request for the drugs must be made twice, 15 days apart, before they are handed out. They must be self-administered, which creates a special challenge for people with ALS. Wesley said he would find a way to meet that requirement, perhaps by tipping a cup into his feeding tube.

The reasons people have given for requesting physician-assisted dying have also defied expectations.

Dr. Linda Ganzini, a professor of psychiatry at Oregon Health and Science University, published a study in 2009 of 56 Oregonians who were in the process of requesting physician-aided dying.

“Everybody thought this was going to be about pain,” Ganzini said. “It turns out pain is kind of irrelevant.”

At the time of each of the 56 patients’ requests, almost none of them rated pain as a primary motivation. By far the most common reasons, Ganzini’s study found, were the desire to be in control, to remain autonomous and to die at home.

“It turns out that for this group of people, dying is less about physical symptoms than personal values,” she said.

There are no studies of the psychological effect of having a prescription on hand, but experts say many patients who have received one find comfort in knowing they have or can get the drugs. About a third of those who fill the prescription die without using it.

“I don’t know if I’ll use the medication to end my life,” Wesley said. “But I do know that it is my life, it is my death, and it should be my choice.”

Aug 20, 2012End-of-life planning choices should be in your control, says Compassion & Choices

By Evelyn Theiss
Cleveland.com
August 13, 2012

It’s never too early to think about the end of your life.

That’s the philosophy of Compassion & Choices, a national organization that was created in 2003, after the merger of what was once known as the Hemlock Society and a group called Compassion in Dying.

The question isn’t one of suicide, says Barbara Coombs Lee, president of the national group, which splits its headquarters between Portland, Ore., and Denver.

“It might just be about discontinuing extraordinary measures,” says Lee, who is based in Portland. “Having the conversation about what people want is what we help them with.”

Cleveland used to have its own chapter of Compassion & Choices, but its former volunteer leader recently retired.

The national chapter, however, offers extensive information on its website (compassionandchoices.org), including state-by-state versions of living wills. It also offers one-on-one counseling with trained volunteers, most of whom have professional experience in medicine or social work, by phone.

Dr. Stuart Youngner, chairman of Case Western Reserve University’s Department of Bioethics, says that while Compassion & Choices “might be sympathetic to physician-assisted suicide . . . their main thing is that people should have control.”

Physician-assisted suicide and outright euthanasia remain controversial issues for some in our country today, says Youngner. Yet the majority of people believe that a person has the right to refuse life-sustaining treatment and the right to insist that it stop if it’s been started already.

Youngner, an expert on end-of-life issues, says that people who want more control over how they die don’t usually want it because of pain. “It’s because they don’t want to exist as they are existing, even if their pain is controlled,” he says. “We see this especially in the upper-middle class. They are used to being in control of their lives, and to making decisions.

“One of the arguments against physician-assisted suicide and euthanasia has been that it will [disproportionately] encourage poor people to want it, and that has not been the case.”

Just because you don’t have access, or the means, to make the end of your life more comfortable doesn’t mean that you want to hasten the end.

We talked with Compassion & Choices’ Combs Lee about the mission of her organization and how it prompts people to begin thinking and talking with family members about how they want the end of their lives to unfold.

Combs Lee was a nurse and physician’s assistant for 25 years before starting a career in law and health policy. She is also a lawyer. She became the president of Compassion in Dying in 1996 and remained in the post of president after the merger.

What inspired you to get into this field?

I came to the issue in 1990 when I was serving in a staff position in the Oregon State Senate. Frank Roberts, a senator and a person of enormous stature and respect, the conscience of the Senate, was trying to get death [with] dignity legislation passed. He was dying of prostate cancer. He also was married to the governor. The legislation failed.

Today, though, Oregon is one of the states with legislation that allows people to be able to choose a peaceful death, with the help of their physician.

But you say this is not about assisted suicide, correct?

No, it is not. What we are saying is that in any jurisdiction there is no reason to die alone, or in pain. Everyone can have a peaceful death, but it takes planning and forethought. And you are never too young to think about this: Terri Schiavo and Karen Ann Quinlan were young women. [Both women had family members fighting to take them off life support.]

What we’re saying is, most people tell us that they want some say about the end of their lives. Many of them say they don’t want to leave a legacy of pain, or delirium or a dramatic death. Those are not comforting deaths for their family members. It’s torture for their families.

Tell me a little about the people who call your toll-free number for counseling.

We field thousands of inquiries every year, and sometimes it’s a very simple conversation. Perhaps they’re on dialysis and they are not in pain, but they just don’t want to go on this way. We might say, “Well, have you talked to your doctors about what would happen if you stopped?” That’s what [humorist] Art Buchwald did. And he ended up living for many months in hospice and writing about it.

People have control over their lives, and they don’t know they do. Sometimes they call to say they’ve been through three rounds of chemotherapy, and wonder if they should have a fourth. We’ll have them consider how it will help, how much their life will be prolonged, what the statistics say about what percentage of people it helps, to help them make an informed decision.

What happens when people get a feeling of control back?

It’s empowering them in their lives. It’s a relief for them to talk about it, to make decisions based on what they want. Some people just decide to discontinue, or to forgo, extraordinary measures.

Sometimes people decide to stop drinking fluids and eating. Is that painful?

Hunger pangs eventually go away within a day, and you can address thirst with good oral care. More people stop eating and drinking in Oregon than use “aid in dying” each year.

It’s not a new thing. That’s what happens when people are dying or their illness advances — their appetite wanes. People get food forced on them, and maybe they don’t want that. I’ve had people say, “I know this will cause my death, and that’s OK because every day is more miserable than the day before.”

To stop taking in nutrition is perfectly legal, in every jurisdiction and in hospitals because the Constitution protects us from unwanted bodily invasion. People may not know to assert the right to be free of bodily invasion. But getting a psychological evaluation is always a good idea, so that your family knows, “Mom is mentally capable of making this decision.”

If people want to die at home in their own bed, instead of in a hospital, are there medications you advise them to have on hand?

People can accumulate medication, but we don’t encourage them, or urge them, to do that. We tell them, “We hope you don’t do this.” Sometimes, they tell us, just having it is enough, so that you can live better each day until your natural death.

What people want is to not feel like victims anymore. And some of them might have been tempted to do something violent, with a gun, or jumping to their death, and this deters them. They’ll say, “I want my grandchildren at my bedside — I don’t want to leave them with a horrific image.”

You say your organization is for a particular group of people.

Yes, it’s for people not in denial about their approaching death. They have to accept it enough to anticipate it and want to exert some control over what it will be like, not just for them, but the people who love them.

How do doctors react to patients who want to exert control over the end of their lives?

So much of what happens in medicine in cases like this is communicated in winks and nods. We also tell people how to talk to their doctors. With some doctors, and some hospitals, you don’t want to say anything like “I want to die.” Some doctors and religion-based hospitals consider that a mortal sin.

We tell people to just talk to their doctors about how the treatments they are getting are affecting their quality of life. It’s a bizarre dance of language you have to engage in.

For example, it’s OK to disconnect a pacemaker to relieve suffering, but not to intend death.

How would you describe the people who turn to Compassion & Choices?

They are not suicidal, and it would be an affront to them to call them that. They are not depressed, they are not mentally ill, they don’t have self-destructive impulses.

They are thoughtful people who do not want to act alone or in anger — they want to act in concert with people who love them. It’s called “aid in dying” because these are people who are already dying.

Aug 17, 2012Steve Lopez: End of life case in New Mexico may affect California

By Steve Lopez
Los Angeles Times
August 14, 2012

There’s no way to predict when or if California will offer what’s known in Oregon and Washington as Death with Dignity, or physician-assisted aid in dying, but I’ll keep you posted on a case in New Mexico that could have implications here.

In the New Mexico case, said Kathryn Tucker, legal affairs director for a nonprofit advocacy group called Compassion & Choices, “We hope to clarify … that a vague statute that makes a crime of ‘assisting suicide’ does not reach the conduct of a physician providing aid in dying, because of course the choice of a dying patient for a peaceful death is not, and ought not be conflated with, ‘suicide.’”

Tucker said the case in question involves a woman with advanced uterine cancer who has said she would like to have, as one option, the right to avoid prolonged suffering by obtaining doctor-prescribed medication she could ingest to bring about a peaceful death if she finds her dying process unbearable.

ucker said California’s statute on assisting a suicide is similarly vague, and if the New Mexico court rules in favor of allowing aid in dying, “it could have persuasive influence in California.”

To learn more about the legal and medical issues on this topic, go to www.compassionandchoices.org and check my video chat above with Tucker and Dr. Judy Neall Epstein, director of the End-of-Life Consultation Program at Compassion & Choices.

Aug 7, 2012A barbaric death, and a plea for a change in the law

By Steve Lopez
Los Angeles Times
August 5, 2012

“My husband has repeatedly asked me to give him a gun, he has asked me to shoot him, and he repeatedly begs to die.”

This came to me Wednesday afternoon in an email from a Northern California woman.

“All I can do is give him the prescribed doses of morphine provided and hope it’s enough to enable him to let go,” said Sandy Wester, whose 71-year-old husband, Donald — Donnie she called him — was in hospice care, with cancer spreading through his body. His dignity was gone, he had many of the same needs as an infant, and the long days brought nothing but anguish.

Wester wrote to say she had followed my accounts of my father’s death and was incensed by my July 22 column about the arrest of an 87-year-old Palm Springs man. Bill Bentinck was locked up for three days on suspicion of murder after his terminally ill wife removed her nasal oxygen catheter to speed death along. Bentinck, who quietly allowed her to pass, was held on $1-million bail but was later released without charges.

I called Wester as soon as I got the email, and she described the scene playing out in her cabin in the Sierra foothills. Donnie, who hadn’t eaten in days, was trying to lift himself off the bed, angry that death was making him wait so long.

“He’s flipping a chair,” Sandy said, describing a light, plastic lawn chair next to the bed. “He’s saying, ‘Why can’t I just die?’”

I flew to Sacramento on Thursday and drove two hours east, across the parched valley and into the Mother Lode, to the little town of Wilseyville. Sandy and Donnie had retired there from the Bay Area, where they had both worked on the production line of a Peninsula newspaper. Though Donnie’s health was already failing from diabetes and a couple of heart attacks when they moved, the couple found paradise in a one-room cabin on the ledge of a breathtaking canyon above the rushing waters of the Mokelumne River’s Licking Fork. They lived modestly, restored old cars and saved for cross-country driving trips until Donnie got too frail.

When I pulled up to the cabin Thursday evening, Donnie was being wheeled out the front door, his death wish finally realized. Sandy was there in the pine-scented twilight, watching her husband leave for the last time, his body covered with a blue blanket. She held her hands to her face.

I helped lift the gurney off the wooden porch, and the attendant loaded the San Francisco native into the back of the white van. Sandy worried that her husband might tumble off his perch as the van twisted down a winding trail, but the attendant assured her Donnie would be safe.

Sandy went back inside, poured a glass of champagne for herself and her friend, Sue Kley, and toasted Donnie, who had died 90 minutes earlier, in the bed the couple had shared.

“He had a hell of a life,” she said, raising her glass. Then she told stories about Donnie’s pride in being a pressman and his love of the simple, solar-powered country life they adopted, with deer and the occasional black bear as neighbors.

Those pleasures began fading fast in April, after Donnie’s bladder cancer spread. When his kidneys began to give out, he realized that the doctor’s estimate that he had six months to live had been far too optimistic.

“It’ll be three weeks tomorrow that he screamed that he wanted to die,” Sandy said Thursday evening. “Get me a gun. Put me out of my misery. Donnie and I were very pragmatic about this. We had our DNR [do not resuscitate] papers filled out, the POLST [physician's orders for life-sustaining treatment].”

Donnie’s line, according to Sandy, was that he wanted to wake up dead, meaning that if physician-assisted death wasn’t possible, he wanted to die in his sleep. Weeks of misery at the end of a good life “was not the way he wanted to go, and I think we need to have more control over the dying process,” Sandy said.

“My God,” said Sandy’s friend Sue, “we put our dogs down because they’ve got a terminal illness or can’t breathe or walk or whatever. But we make a human being … suffer.”

Sandy said Donnie had recently backed off his requests that she go fetch a pistol, but only because he didn’t want her to have to “clean him up.”

On Wednesday night, he fell out of bed and the fire department came to help Sandy lift him. On Thursday morning, he was barely hanging on.

“At 5:30, he laid there and that’s when the horrible breathing started,” she said of the death rattle that often signals the end is near. “And then it got worse. Oh my God, it was horrible.”

She used the word “barbaric” to describe the way Donnie died, and it’s not the first time I’ve heard that very description from a Californian wondering why we don’t have the same end-of-life options that residents of Oregon, Washington and Montana do. The answer is that religious organizations — chief among them the Catholic Church — and some medical associations have derailed such efforts in the past.

Sandy said she wanted to share Donnie’s story in hopes that more people will begin demanding a “compassionate death law in California.” If it hasn’t happened when her time comes, Sandy said, she’ll move to Oregon.

Before leaving the cabin, I asked Sandy if she’d be OK through the night. She looked through the window at the sun falling behind a shadowy, back-lit ridge and said she had Sue and other friends to call on if she needed them.

“I’ll be fine,” she said. “It’ll be a beautiful sunset tonight.”

Jul 27, 2012Exit Strategy

By Scott McLemee
Inside Higher Ed
July 25, 2012

Of the many strange things in Gulliver’s Travels that make it hard to believe anyone ever considered it a children’s book, the most disturbing must be the Struldbruggs, living in the far eastern kingdom of Luggnagg, not covered by Google Maps at the present time.

Gulliver’s hosts among the Luggnaggian aristocracy tell him that a baby is born among them, every so often, with a red dot on the forehead — the sign that he or she is a Struldbrugg, meaning an immortal. Our narrator is suitably amazed. The Struldbruggs, he thinks, have won the cosmic lottery. Being “born exempt from that universal Calamity of human Nature,” they “have their Minds free and disengaged, without the Weight and Depression of Spirits caused by the continual Apprehension of Death.”

The traveler has no trouble imagining the life he might lead as an immortal, given the chance. First of all, Gulliver tells his audience at dinner, he would spend a couple of hundred years accumulating the largest fortune in the land. He’d also be sure to master all of the arts and sciences, presumably in his spare time. And then, with all of that out of the way, Gulliver could lead the life of a philanthropic sage, dispensing riches and wisdom to generation after generation. (A psychoanalytic writer somewhere uses the expression “fantasies of the empowered self,” which just about covers it.)
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