End-of-Life Choice, Palliative Care and Counseling

Washington State

Farewell to Booth Gardner

by Barbara Coombs Lee
March 18, 2013

Governor Booth Gardner died last Friday, after enduring the long relentless assault of Parkinson’s Disease. He was 76 years old, and he’d fought the progression of his illness valiantly for more than 20 years.  From 1985 to 1993 he served as governor of Washington and delivered much of lasting value to its people. In 2008, contemplating his own mortality, he brought them an aid-in-dying law and empowered them with the comfort of choice and control over needless suffering.

From September 2006 to November 2008 Booth led the Washington state campaign to pass a Death with Dignity law like the one in effect in Oregon since 1997. I remember well how his leadership emerged.

We had begun to think seriously about launching a Washington campaign for aid in dying in early 2006. With polling, focus groups and brainstorming we had begun to shape a proposed law and name it.  We thought we were the logical leaders. We were veterans of two successful campaigns and three intense years defending Oregon’s Death with Dignity law from the state legislature, Congress, the U.S. Department of Justice and litigants in federal court. Twice we had brought the argument all the way to the U.S. Supreme Court. We felt seasoned and successful.

Unbeknownst to us, Booth Gardner was also thinking about aid in dying, and starting to talk with his advisors and friends about a law to expand end-of-life choice. He thought this could be his final act of public service, and a lasting legacy to the people of Washington.

When we became aware of each other’s efforts, we met in the Seattle office of Compassion & Choices of Washington. Booth had not yet received the brain procedures that would later reverse some of his Parkinson’s symptoms and it was sometimes difficult to understand his speech. Nevertheless, he projected unwavering confidence and abiding good nature. He looked at us, the supposed “experts” seated around the table. Then he jabbed his thumb back over his shoulder with absolute authority, and said, “We’re going to have a campaign, and I want you all to get in line behind me.”  So we did.

Booth was a strong and compelling campaigner. In September 2006 he spoke candidly to attendees at the Annual Conference of Elder Law Attorneys:

Many of you know that I have been struggling with Parkinson’s Disease for the past 15 years and some may think that my interest in an Aid in Dying law is because I’m tired of dealing with it.

Well, it is discouraging at times but I have a lot of plans for the future involving new initiatives in education, new woodworking projects, more trips to watch a grandson’s baseball games and a chance to make new friends – just to name a few of the things that I look forward to in the years to come.

Just the same, my struggles with this disease remind me of my mortality every day.  I understand suffering differently now than I did before my Parkinson’s symptoms began.  I can more clearly imagine myself in the place of people who know they will not get better – that their end is very near – and whose only quality in life is misery.

So, I understand better now why an Aid in Dying law is so important both for people who might use it and for those who look on with compassion as loved ones suffer intolerably through their final days.

Working with Booth on his campaign was a joy and a privilege. His energy never flagged; his spirits never wavered.  He never persuaded the anti-choices folks to see things his way, but his good heart did persuade them of his high regard and good wishes.

He was as principled as he was kind, telling audiences, “While we respect other beliefs, we need to make it clear that we are bringing this proposal because of our own deeply held beliefs that it is the right and compassionate thing to do.”

Thank you, Booth, for your vision, your leadership, and your kindness.

A Graceful Exit: Taking Charge at the End of Life

by Claudia Rowe
YES! Magazine
September 19, 2012

 

I was standing in my cubicle, a 24-year-old fact-checker envisioning a publishing career of glamor and greatness, suddenly shaking as I read the document my mother had mailed. It detailed her wish that I promise never to keep her or my father alive with artificial respirators, IV-drip nourishment, or anything else she deemed “extreme.”

I was horrified, and slightly angry. My mom was a 54-year-old literature professor who’d spent the 1970s eating whole grains and downing vitamins. She was healthier than anyone I knew. Why get so dramatic now? It seemed ghoulish, not to mention premature. But I scrawled my signature at the bottom of the page and shoved it into an envelope, my mother’s voice in my head, prodding me along.

As with the whole wheat and vitamins, my mother—back in 1990—was onto something long before it became conventional wisdom. But these days, Americans’ approach to aging and death is rapidly evolving, pushed both by the numbers and the grim reality behind them: In 40 years, there will be 19 million Americans over 85, all at high risk of losing the ability to care for themselves or dwindling away due to organ failure, dementia, or chronic illness. (The days of a sudden fatal heart attack are fading; by 2008, the death rate from coronary heart disease was down 72 percent from what it was in 1950.)

So while many seniors now live vigorous lives well into their 80s, no one gets a free pass. Eating right and exercising may merely forestall an inevitable and ruinously expensive decline. By 2050, the cost of dementia care alone is projected to total more than $1 trillion.

My mom’s decision to face her end came not from any of these facts, but from the nightmare of watching her own mother’s angry decline in a New York nursing home. “You’re all a bunch of rotten apples,” Grandma growled at visitors, the words erupting from her otherwise mute lips. And there she sat for three years, waiting to die. “Why can’t you just get me some pills so I can go?” she would sometimes wail.

The slide toward death was only slightly less awful for my father’s mother. Grandma Ada would greet me with a dazed smile—though it was impossible to know if she recognized the person standing in front of her wheelchair—before thrashing with involuntary spasms. An aide would come to restrain her, and then my dad and I would leave.

This cannot be right. This cannot be what we want for our parents—or ourselves. More

Northampton woman, plagued with terminal illness, supports ‘Death with Dignity’ option on the Massachusetts ballot

By Dan Ring
The Republican
August 20, 2012

Myra P. Berzoff said she doesn’t know if she would take life-ending medications, but said she would like the choice.

Berzoff, a Northampton resident for about 12 years, has been receiving home-based hospice services through Cooley Dickinson Hospital. At 91, she needs oxygen virtually 100 percent of the time, or else she would suffocate. She said she was diagnosed with emphysema three years ago and lives with the fear she could die from breathlessness.

Berzoff said she is a strong supporter of a ballot question on Nov. 6 that if approved by voters would allow adults to self-administer lethal drugs after requesting a prescription. The proposed Death with Dignity Act is modeled after similar laws in Oregon and Washington, also passed by voters. To be eligible, people would need to be diagnosed with a terminal illness and given six months or less to live by a primary doctor with verification by a consulting doctor.

Berzoff, who ran programs and performed other duties at the Helen Keller Services for the Blind in New York for about 20 years, said she wants to live long enough to vote for the ballot question. “I think everybody has a right in making that decision if they are of sound mind,” she said. “I don’t see any point in forcing people to live on and on. I don’t see a reason.”

Opponents call the ballot initiative “physician-assisted suicide.” Critics say that hospice and palliative care are better choices. A new group, called the Committee Against Physician Assisted Suicide, has started a web site at www.stopassistedsuicide.org.

Berzoff said she is losing weight, requires oxygen around the clock and must use a walker to get from room to room in her home.

“I don’t know how much palliative care will do for me in the final analysis,’’ she says. “I don’t know how sick I will get in the final analysis.”

She said she used to smoke about a half pack of cigarettes a day, but quit decades ago when her grand-daughter, Sarah, then 4, told her she didn’t want her to die from smoking. She doesn’t know if smoking caused her emphysema.

Berzoff , who has Medicare, received hospice because she said her doctor has twice certified she had less than six months to live. But she said she has refused to die and that she doesn’t consider herself terminally ill as long as she has oxygen.

She said she has reached no conclusions about whether she would self-administer drugs to instantly take her life.

“I think I should have the right if tomorrow I decide I want to do myself in,” she says bluntly. “I’m using up resources. I feel very strongly about that.”

Basically the same law was enacted in Washington in 2009 and Oregon in 1997. Relatively low numbers of people have used the law, including 114 people who received the lethal medications prescribed by a doctor in Oregon last year and 103 in Washington, according to reports by public health authorities in those states. Roughly a third of those in each state did not use the drugs, however.

Among the opponents of the ballot question in Massachusetts are the four Roman Catholic bishops including Bishop Timothy McDonnell in Springfield.

In the September issue of the Catholic Mirror, due to be released the end of this month, McDonnell writes that the ballot question seeks to authorize physicians “to give death-dealing drugs so that people with serious illness can commit suicide,” according to an excerpt of his column provided by the Diocese of Springfield.

James F. Driscoll, executive director of the Massachusetts Catholic Conference, the public policy arm for the Roman Catholic bishops in Massachusetts, said the church values life from conception to death. He said the church is a big supporter of hospice and palliative care. McDonnell also emphasizes hospice and palliative care in his upcoming column.

Driscoll said the ballot question would set a dangerous precedent. “The church is against this initiative and thinks it is a dangerous path to take a human life before natural death,” Driscoll said.

About 2.6 million Catholics live in Massachusetts, or about 40 to 45 percent of the population, according to Driscoll.

The new coalition, named the Committee Against Physician Assisted Suicide, said it plans to recruit citizens, healthcare leaders, and religious organizations to defeat “this poorly written, confusing, and flawed ballot question,” according to its web site.

Under the ballot question, which qualified with the signatures of about 125,000 registered voters, terminally ill patients would need to make three requests for the medications including two oral and one written, with two different waiting periods between the final request and the prescription.

Stephen Crawford, a spokesman for Dignity 2012, said two former editors of The New England Journal of Medicine and other key doctors were among the original signers of a petition for the law.

The Massachusetts Medical Society, however, opposes the ballot question, keeping in line with the Society’s longstanding policy against physician-assisted suicide, said spokesman Richard P. Gulla.

Dr. John S. Howland, a family physician in Southbridge, said the ballot question is not good for physicians because it would violate the Hippocratic Oath. “It’s very detrimental to the doctor-patient relationship,” he said.

Crawford said the ballot question does not call for suicide in the traditional sense, which involves depression and despair. He also said the initiative should not be labeled “physician-assisted suicide,” which conjures up images of the late Dr. Jack Kevorkian and his “suicide machine” made of scrap parts.

“This is about patients who are suffering,” Crawford said. “This isn’t about the doctors.”

Berzoff, born in New Haven, grew up in a different era.

Her father, a Yale University graduate, contracted tuberculosis, an infectious disease mostly of the lungs. The family moved to western North Carolina , along with thousands of others with the then-incurable disease, seeking fresh air and sunshine.

Born of Jewish parents, she attended for 11 years and graduated from St. Genevieve-of-the-Pines, an all-girls Catholic school, considered one of the state’s best private schools. She obtained her bachelor’s at the University of North Carolina at Chapel Hill and her master’s at The Teachers College at Columbia University.

Her husband, Sydney, a longtime director of development for Brandeis University, would not have agreed, she concedes. He would have taken any treatment to stay alive, she said. He suffered for many months from lymphoma before dying at 49, leaving her a widow for the last 45 years. A daughter, Barbara Shapiro, 49, died of breast cancer after a prolonged period.

Another daughter, Joan Berzoff, is a professor at the School of Social Work at Smith College in Northampton, and a third daughter, Emily Enteress, is businesswoman.

Taught by nuns at Catholic school, Myra Berzoff scoffs at the argument that the ballot question is dangerous because it advocates taking a human life before natural death. She said she should have the option offered by the ballot question.

“That’s absurd,” she said. “If you’re suffering, it’s your life. It isn’t the life of the Catholic church. It’s mine.”

Assisted suicide: New Mexico court asked to redefine the term

By Diane Carman
DenverPost.com
August 19, 2012

The question before the court in New Mexico is absurdly simple and yet impossibly complex. What is the meaning of “assisting suicide”?

If a terminally ill patient refuses a ventilator or a feeding tube and the physician yields to that decision, is that assisting suicide? If the patient is in excruciating pain and requests total sedation and no nutrition or fluids, can the doctor be held accountable for his death? What if the patient seeks a prescription from her physician so that when the pain of dying is overwhelming she can seek the ultimate relief on her own?

Two oncologists from the University of New Mexico Health Science Center and a patient with advanced cancer are the plaintiffs in a lawsuit filed in New Mexico District Court designed to clarify the legal definition of assisting suicide. That decision, likely to come in the next year, could send reverberations through the medical establishment in the Rocky Mountain West and across the country.

Morris vs. New Mexico contends that the statute outlawing “assisting suicide” never was intended to apply to physicians treating patients in the late stages of terminal illnesses. The plaintiffs believe that “patients who are dying and finding themselves trapped in an unbearable dying process should be able to choose aid in the dying process,” said Kathryn Tucker, director of legal affairs for Compassion & Choices, a nonprofit organization that works to expand choices in end-of-life care. She is one of the attorneys representing the plaintiffs in the case.

Compassion & Choices advocates for physicians to be allowed to prescribe medication to mentally competent terminal patients who can administer the drugs to themselves “to bring about a peaceful death,” Tucker said.

The organization contends that it’s fundamentally different than the commonly held idea of suicide, which presumes that without the suicidal acts, the person would be able to live. Opponents say it is exactly the same, an affront to human dignity, false compassion and highly susceptible to abuse.

If anyone had asked 48-year-old Aja Riggs a year ago for her opinion on assisting suicide, chances are she would have supported it. “I would have said, ‘Sure, I think people have the right to choose at the end of their lives if they’d like a physician’s aid in dying.’ ” She’d never had a particularly keen interest in the issue, though.

That changed 11 months ago.

Now, the self-employed professional organizer from Santa Fe said, “It’s really important to me.”

Riggs was diagnosed with uterine cancer last August. Surgery in October revealed that her condition was at stage 3c, far more advanced than doctors had expected.

After she recovered from the surgery, she underwent chemotherapy, during which another tumor developed. Then she had radiation treatments and now is receiving chemotherapy again.

“When I was diagnosed, I decided I wanted the most aggressive treatment that’s going to be effective. I thought, if I can get another 20 years in this life or so, wouldn’t that be great,” she said.

But Riggs is realistic.

“If my disease progresses, more difficult individualized decisions will be coming up,” she said. “If this disease does look like it will end my life, I can’t say for sure how I will make those decisions. … I can’t tell you for sure that I would get that prescription, fill it and use it. But I absolutely want to have that choice.”

Morris vs. New Mexico is modeled on Baxter vs. Montana, which was decided by the Montana Supreme Court in 2009. In a 5-to-2 ruling, the Montana court said that physician aid in dying was protected under the law providing for living wills.The court said that the state’s Rights of the Terminally Ill Act “very clearly provides that terminally ill patients are entitled to autonomous, end-of-life decisions, even if enforcement of those decisions involves direct acts by a physician.”Laws on assisted suicide are the purview of the states. In a case challenging Oregon’s assisted suicide law, the U.S. Supreme Court ruled in 2006 that the federal government does not have the power to overrule state statutes in this area.

Colorado’s assisted suicide law states that it is considered manslaughter if a “person intentionally causes or aids another person to commit suicide.”

While the specific statutes across the country are not identical, states generally protect the rights of terminally ill patients to give advance directives and make decisions on their care at the end of life. Tucker, who was among the lead attorneys litigating Baxter vs. Montana, maintains that the long-standing statutes outlawing assisting suicide were never intended to apply to physicians providing end-of-life care for terminally ill patients.

These statutes were “enacted at a time when medicine didn’t prolong the dying process as it does today,” said Tucker. “It’s pretty clear that that was not on the minds of legislators who introduced or voted on these measures.”

Instead, the laws were aimed at people who might provide a distraught teenager with the means to end his life after a bad breakup, or the friend who helps someone make a noose after he lost his job, she said. “There is an appropriate role for these statutes, but I don’t think they have anything to do with aid in dying.”

Professor Robert Schwartz of the University of New Mexico School of Law said that the argument in the New Mexico case is that “the court should defer to physicians in defining what constitutes appropriate care.”No one is going to argue that a physician couldn’t, for example, prescribe palliative sedation. No one is arguing that a patient couldn’t decide not to take nutrition and hydration, at least under New Mexico law. That’s entirely the patient’s decision,” he said. “This is one of the arrows in the doctor’s quiver, one way to provide adequate care at the end of life.”The Colorado Medical Treatment Decision Act, signed by Gov. Bill Ritter in 2010, explicitly provides for persons to refuse medical treatment, nutrition and hydration, and to execute advance directives outlining the circumstances under which they want such measures to be taken on their behalf.

Tucker and Schwartz said that momentum for physician-assisted suicide is strong across the West. Legislation that legalized it in Oregon and Washington, along with the Montana court decision, have generated growing support for the practice, and both advocates and opponents are watching the New Mexico case closely.

The most outspoken opponents to physician-assisted suicide have been leaders in the disability rights community. Diane Coleman, president and CEO of the nationwide disability rights organization Not Dead Yet, said there already are sufficient means for terminally ill patients to end their lives without providing immunity from prosecution for physicians who prescribe lethal drugs.

“The risks to many outweigh the alleged benefit to the few,” she said. Those risks include people succumbing to coercion from heirs or other family members, or to pressure from health insurers who deny services needed to cope with limitations caused by their conditions.

Rather than assisting people in ending their lives, Coleman suggests that physicians should help patients access the support they need to live well.The public response to Aja Riggs’ stand on assisted suicide has been “overwhelmingly positive,” Riggs said. “People have said, ‘Thank you so much for speaking out on this.’”It’s important to remember, she said, that the only patients who would be allowed to obtain physician assistance in suicide would be those who are terminally ill and mentally competent.

“This is something the patient chooses and does for herself. It’s not the doctor doing it,” she said. “It’s not a choice between life and death. It’s a choice about what kind of death.”

Review 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.”