End-of-Life Choice, Palliative Care and Counseling

Washington State

Where’s our right to die?

By Santiago Wills
Salon
July 3, 2012

Just a couple of weeks ago, the British Columbia Supreme Court fired the latest volley in North America’s long and dramatic debate about physician-assisted suicide. In a 395-page ruling, Justice Lynn Smith claimed that the Canadian constitution didn’t prevent doctors from aiding suffering patients who wished to end their lives — a position that kicked up attention south of the border as well.

During the past two decades, similar contested rulings have opened the way for physician-assisted death in the United States. Despite strong opposition from religious organizations and groups representing handicapped and disabled people, Oregon and Washington state legalized physician-assisted suicide in 1997 and 2008, respectively. In fact, since 1997, more than 900 people in Oregon have received a prescription to commit suicide, while in Washington, nearly 300 people have requested a similar death in the last four years.

Assisted suicide, to put it mildly, is a controversial subject — and one that continues to be fought over vociferously by both right-to-die activists and religious groups. But according to Howard Ball, a professor emeritus of political science at the University of Vermont, the legalization of physician-assisted death is a gesture of human compassion. As he details in his new book, “At Liberty to Die: The Battle for Death With Dignity in America,” the issue goes to the heart of bigger questions about the American soul — from the meaning of personal liberty to the importance of constitutional law.

Salon spoke to Ball over the phone about the evolution of death, Jack Kevorkian and the right-to-die movement’s legal hopes.

One Story Behind Washington 2011 Death With Dignity Act Statistics

By Colin Fogarty
OPB News
May 2, 2012

The latest statistics on Washington’s Death with Dignity Act show a steady increase in the people who have legally ended their lives under the law. Seventy terminally people hastened their deaths in 2011 with the help of a doctor’s prescription. That’s according to a new report out Wednesday from the state Department of Health. Since 2009, a total of 255 terminally ill adults have ended their lives in this way.

Meg Holmes of Seattle held brain cancer at bay for 16 months. Surgeries and radiation couldn’t keep her down. The family’s blog about the experience shows happy images of hikes, bike rides, encouraging MRIs. But her husband, Andrew Taylor says in March last year, she had an ordinary MRI.

“And with these MRI’s, you always go and see the doctor immediately afterward. And typically the doctor bounces through the door. And this time he didn’t,” Taylor says. “And we pretty much knew what was coming.”

Over the next seven months, Meg lost her ability to see and move around. And then suddenly …

“She told me out of the blue that she had been thinking about the Death with Dignity Act and now that was something she was really interested in,” Taylor says.

According to the latest numbers from the Washington Department of Health, Meg Holmes is typical of the 70 terminally people who hastened their death with a doctor’s prescription. Most were white, lived west of the Cascades, had health insurance and suffered from cancer. Seventy in 2011 is up from 51 in 2010 and 36 in 2009. One of the law’s advocates, Robb Miller of the group, Compassion and Choice Washington, says despite the increase, this procedure is rare.

“We’re talking about a minuscule number of people,” Miller says.

The Washington Death with Dignity Act requires participating physicians to report information about patients to the state Department of Health. But opponents of doctor-assisted suicide, such as Margaret Dore with the group Choice Is An Illusion, want more intensive oversight.

“What’s not included is whether or not these people acted voluntarily. Did the people consent? We hope they did. Was in their choice? We hope it was. Do we know that? No. Does anybody know that?” Dore asks.

Andrew Taylor says no one who spoke to his wife in her last few days believed it was anything but her choice. He says the day after Meg received the medication, her family gathered around her bed.

“She drank down the half cup of liquid. And she was literally asleep by the time she … by the time she finished drinking the half cup of medication, she was unconscious,” Taylor says.

He says ten minutes later, she was dead. In her final hours, Taylor promised his wife he would take her favorite hiking staff with him up rugged Northwest trails. He plans to take that trip this spring. Taylor says he’ll take some of her ashes too.

The latest numbers from Oregon’s Public Health Division says a total of 71 people in Oregon used the state’s Death with Dignity Act in 2011.

We Agree with the Catholic Conference (You Read that Right)

By Robb Miller
Executive Director
Compassion & Choices of Washington

An amazing thing happened in Olympia, Washington last month. In a legislative hearing room, representatives of Compassion & Choices of Washington and the Washington State Catholic Conference sat down before a budget committee. Together they successfully advocated the restoration of funding to produce the Death With Dignity Act’s (DWDA) annual report.

On what issue do the Catholic Conference and Compassion & Choices of Washington agree? We both want the accountability that reports by the Department of Health provide. On an annual basis, these reports show the DWDA is working as voters intended, and vulnerable people are protected from abuse.

Watch (testimony by the Catholic Conference starts at 43:41, by Compassion & Choices of Washington immediately after).

We learned that the DWDA reporting funds were targeted for elimination at 11am on Monday, December 12th. Kate White Tudor testified on behalf of Compassion & Choices of Washington in favor of restored funding that afternoon. Thanks to an amendment offered by Representative Reuven Carlyle (with support of Eileen Cody and the Ways & Means chair Ross Hunter), the House Ways & Means Committee amended the budget bill to restore funds for DWDA reporting, The amendment was retained as part of the bill when it passed the House floor Tuesday evening and a similar amendment process restored funding on the Senate side.

We consider ourselves the steward of the DWDA and continually advocate its impeccable implementation. State reports repeatedly confirm the safety of physician aid in dying. The accumulated knowledge from Oregon and Washington is an invaluable resource to other states and nations seeking to expand end-of-life choice for their citizens.

Aid in dying must become an open, accepted end-of-life care option, integrated into standard medical practice. When we shine a light on its practice we help reach that end. The state’s annual report is an important tool to ensure the practice has no unintended consequences – and on that, we and the Catholic Conference can agree.

Aid in Dying 1994 – 2011: Data from Oregon’s “Laboratory” is Complete

Seventeen years ago the people of Oregon took a bold step in end-of-life care and comfort. By citizen initiative, they adopted eligibility criteria and practice guidelines for terminally ill, mentally competent adults to obtain medication that would ensure peaceful dying. I was one of the drafters of that law, and I have stood by every word ever since. For years, when reporters asked what I would change in the law, I replied “one comma,” to clarify that impaired judgment from any type of mental dysfunction disqualifies a patient from making a request. Subsequently, we did change that comma.

Fourteen years of experience integrating aid in dying into Oregon medical practice, three years replicating that experience in Washington and two years with a different regulatory model in Montana now inform policy-makers. Our work to craft subsequent Death with Dignity Acts and aid-in-dying policies reflects the wisdom gained from practice.

Opponents believed catastrophe would befall Oregon and medical practice would suffer, but the opposite occurred: End-of-life care is robust, thriving and increasingly patient-centered in Oregon. Thousands of patients find comfort every year knowing they do not have to suffer unbearably. No evidence exists of anyone harmed. Opponents’ assertions to the contrary rely on vast conspiracy theories, fraud and cover-up by Oregon hospices and the hospice association, officials at the Department of Health, the medical disciplinary board, and police departments in communities across the state. These scary stories hold no credibility, and polling reveals a full 77% of Oregonians support their Death with Dignity Act.

Proponents believed terminally ill patients want and need assurance they can control the time and manner of their dying, and will apply profound thought and care before ever exercising this control. We believed nothing could override doctors’ drive to cure disease and prolong life, but that as death inevitably approaches, most doctors would allow qualifying patients this measure of comfort. Those beliefs have been validated.

Oregon’s data and experience has revealed other truths. We could not have predicted all of them, but they carry important lessons for our future advocacy:

1. Oregon’s Death with Dignity law says patients may express a “wish to die.” Data and experience contradict this. We now know patients approaching death and planning for peace have no wish to die. They wish only, if death is imminent, that it be as peaceful and humane as possible.

2. Oregon’s law says a physician may provide, and a qualifying individual may receive, medication “for the purpose of ending his or her life … .” Data and experience indicate this statement of purpose is inaccurate. Patients making a request want assurance, and they have made no decision about whether to ingest the medication. Fully 40% of patients who completed the entire qualifying process in 2010 either did not fill the prescription or did not take the medication. Experience teaches the purpose of the prescription usually is to provide comfort and peace of mind. The purpose is to lend substance to the fondest hope – for a peaceful death, at home with loved ones near. The purpose is to improve the quality of life for a dying person. The purpose is not to cause death, for cancer or other fatal disease is already producing that end.

3. Physicians embrace clear practice guidelines. They are eager to conform to the expectations of their peers. Many Montana physicians would have welcomed further guidance from the legislature to round out the broad aid-in-dying parameters laid out by the Montana Supreme Court. Legislators declined to adopt guidelines, so the Court’s public-policy findings guide Montana’s aid-in-dying practice, which is also informed by practice in Oregon and Washington, and relevant authoritative medical literature.

4. As much as doctors embrace practice guidelines, they do not appreciate government-required paperwork and the idea that Big Brother can intrude into the intimate and private doctor-patient relationship. For fourteen years Oregon’s medical community has been heroic and diligent in completing elaborate and duplicate forms for every completed aid-in-dying request and meeting onerous reporting deadlines. Some have faced investigation by the medical disciplinary board for minor technical omissions on these forms. These physicians endured intrusive investigations that never revealed actual violation of the law.

As the U.S. Supreme Court intended, Oregon has served as a laboratory to test the impact of a new end-of-life option on patients, physicians and end-of-life care. Washington’s data and experience reproduced the findings from Oregon. The “laboratory experiment” is complete, and the results will inform our advocacy from now on.

· We will work for policy that reflects community standards, establishes clear guidelines and guides physicians in safe and responsible aid-in-dying practice, without burdensome government reporting on every patient encounter. Bureaucratic paperwork has provided important data demonstrating the safety of aid in dying, but it is not responsible for making the practice safe. As is clear in Montana, physicians meticulously adhere to a standard of practice defined by the bounds of the Court decision, without the needless and intrusive burden of government reporting.

· We will affirm the true purpose of aid-in-dying medication is to provide comfort and improve the quality of life for dying patients. Physicians intend to comfort, and patients intend to acquire the ability to escape unbearable suffering.

As advocates we have defended the law from multiple attacks. As stewards we have guided patients, families and medical professionals through the eligibility requirements, procedural guidelines and reporting duties of aid in dying. As investigators we have observed the law’s provisions play out at countless bedsides, living rooms and kitchen tables across the state. Medical studies, state reports and our own experience inform our “post-Oregon” advocacy. We must not ignore the lessons of Oregon’s data and experience.

New Poll: Oregon and Washington Residents Lead Nation on Informed Choice at the End of Life

National Journal-Regence Poll:
Over 70% OR and WA Voters Support Death With Dignity Acts

Compassion & Choices (C&C), the nation’s oldest and largest nonprofit advocating for
better end-of-life care and choices today responded to the recent poll “Living Well at
the End of Life,” conducted by The National Journal and Regence Foundation. The poll
reaffirms that Washingtonians and Oregonians prefer to enhance the quality of their life
when faced with a serious illness, rather than extending their lives with every possible
medical intervention. Public opinion research has consistently found that Americans
want terminally ill individuals to have the right to make their own informed choices at
the end of life.

“The vast majority of Americans want to know about their end-of-life choices, and it’s
no accident that Oregon and Washington are way ahead of the rest of the country,” said
Barbara Coombs Lee, president of Compassion & Choices. “The poll demonstrates that
Oregon and Washington, the two states with voter-enacted Death With Dignity laws,
lead the nation in communication and informed choice at the end of life. Aid in dying
has driven a conversation about end-of-life choices that has informed healthcare
recipients and improved outcomes for peaceful dying and uncomplicated grieving. .
Opponents claim aid in dying undermines other options, but the poll proves the
opposite. Informed patients, empowered with a range of end-of-life options, can
navigate the end of their lives according to their own values and beliefs.”

The poll compared responses from Oregon and Washington voters to national results.
On every question, Oregon and Washington voters far outpaced the nation in their
knowledge of end-of-life care and options. They also chose quality over quantity at the
end of life.

Below are some excerpts from the recent poll of 600 registered voters each in both
Oregon and Washington.

Now, thinking about these issues from a different perspective… I’m going to read you
the names of some different policies in (Oregon/Washington) and first please tell me if
you’ve heard of it, then please tell me if you have a favorable or unfavorable impression
of it.

33. The (next/first) one is the Death with Dignity Act…The Death with Dignity Act was
(approved by Oregon voters in 1994 and reaffirmed in 1997 / approved by Washington
voters in 2008). This act allows doctors to prescribe medicine for some of the most
seriously ill patients to take in order to voluntarily bring about their own death.
Now that you’ve heard some more information, do you generally have a favorable or
unfavorable opinion of this program? [IF FAVORABLE/UNFAVORABLE, ASKED:] Do you have a VERY (favorable/unfavorable) or a
SOMEWHAT(favorable/unfavorable) impression of The Death With Dignity Act?
OR WA
52% 44% Very Favorable
26% 25% Somewhat Favorable
7% 11% Somewhat Unfavorable
13% 16% Very Unfavorable
77% 70% TOTAL FAVORABLE

To view the poll’s topline results, click here: Living Well at the End of Life Poll-Topline Results.