End-of-Life Choice, Palliative Care and Counseling

Washington State

Physician-Assisted Aid-in-Dying: A New Front in the Culture Wars?

Antol Polony has a great post up on the seven ponds blog about the battle for end-of-life choice.

A new front in the so-called “culture wars” may well be brewing. All the factors are there: a vast disparity of opinions reinforced by geographic and cultural segregation; passionately defended religious mores pitted against the social and economic motives of those who may not share them; and a rising swell of political and legal initiatives that will unavoidably challenge beliefs and impact thousands of lives. It has been several years since the court-ordered removal of Terri Schiavo’s feeding tube, which precipitated the largest media blitz concerning assisted dying since Dr. Jack Kevorkian’s “assisted suicides” in the 1990s, and it may not be long until an emotionally complex case in Washington, Oregon, or Montana, the three states where physician-assisted aid-in-dying is currently legal, initiates a similar media frenzy.

The aid-in-dying controversy has been debated since long before Jack Kevorkian. The first significant drive to legalize it came in 1906, and there have been many unsuccessful attempts at legislation and regulation throughout the 20th Century. In 1996 Oregon was the first state to successfully legalize physician-assisted dying, through Ballot Measure 16 and the Death With Dignity Act, co-authored by Barbara Coombs Lee, president of Compassion in Dying (subsequently Compassion & Choices). Oregon’s Death With Dignity Act proved both constitutionally sound, and popular. In 2008, Washington state voters approved I-1000, a bill developed and fiercely advocated by Compassion & Choices, and modeled closely off the successful Oregon law. In 2009 the Montana Supreme Court legalized aid-in-dying through Baxter v. Montana, a case brought by Compassion & Choices on behalf of a man dying of lymphocytic leukemia. That makes three states in which aid-in-dying is now permitted. California may not be far behind, should the Right to Know End-of-Life Options Act, signed into law in 2009 and similarly authored by Compassion & Choices, remain popular. A groundswell appears to have risen. A backlash may soon follow.

On June 16, 2011, the United States Conference of Catholic Bishops (USCCB) approved a statement expressing their firm opposition to aid-in-dying, stating “allowing doctors to prescribe patients the means to kill themselves is a corruption of the healing arts.” The church’s opinions here are significant, as Catholic hospitals account for over 12.5% of all community hospitals in the U.S. Though their position regarding this matter has long been well known, of late they have grown more vocal. In March of 2004, Pope John Paul II pronounced the removal of feeding tubes from vegetative patients immoral, the procedure that precipitated the Terri Schiavo media frenzy.

Indeed, if Compassion & Choices has acted as the standard bearer for the aid-in-dying movement, the USCCB has acted in the roll of foil, campaigning vigorously against assisted-dying initiatives. In their recent statement, the USCCB states that Catholic teaching views suicide as “a grave offense against love of self, one that also breaks the bonds of love and solidarity with family, friends, and God.” In her response, Barbara Coombs Lee writes “A bright and wide line separates the crime of assisting a suicide from the medical practice of aid in dying…we welcome – and are deeply grateful for – today’s clarity and affirmation that religious objection is the foundation of opposition to the medical practice of aid in dying.” One could be forgiven for recognizing echoes of the fall-out following Roe v. Wade, with Compassion & Choices in the place of Planned Parenthood, and organizations like the Euthanasia Prevention Program in place of the National Right to Life Council.

Perhaps it’s too early to say. This is an endlessly complex issue, and there are plenty of prominent Catholic figures that support physician-assisted dying, as well as doctors who do not, citing a potential for abuse and untoward pressure applied to terminally ill patients. The state of New York, for instance, recently passed a law, widely disliked within the medical community, requiring its physicians to discuss “end-of-life options” with their patients. Public opinion seems perhaps less conflicted than in the case of abortion: depending on the language, with a vast differential between assisted-suicide and aid-in-dying, a greater number of Americans have always supported the right to end-of-life choice (a distinction likewise sited by aid-in-dying proponents, the word “suicide” implying a depressive or mentally unsound person). Still, who’s to say how this will play out should the legalization drives continue, and the conversation grows louder. Either way, it appears that the aid-in-dying controversy is only just getting started.

Read the post and others by Antal Polony over at seven ponds.

Dogma vs. Dignity

Compassion & Choices works to improve care and expand choice at the end of life. We dream of a time when all can live and die as free people — in dignity according to their own values and beliefs.

It’s an interesting circumstance that the United States Conference of Catholic Bishops (USCCB) met in Washington to adopt its first formal teaching on life-ending medication as an end-of-life choice. While this is a new attack, the Catholic hierarchy has a long, well-documented history of opposition to patient autonomy at the end of life. In 2008 Washington citizens passed a Death with Dignity Act by large margins. The Catholic Church’s political arms were principal funders of the opposing campaign. Support for aid in dying is strong in every corner of the state, and Compassion & Choices of Washington is a highly respected partner with healthcare providers, churches and other institutions to improve end-of-life care, increase hospice utilization, and ensure access to and compliance with the Death with Dignity Act.

We are proponents of comprehensive end-of-life choices and defend our advocacy as compassionate, moral and just. Most Americans believe a mentally competent, terminally ill person should be able to obtain medication for peaceful dying from their physician. The Gallup organization has polled this question since 1947 and never found less than a solid majority in favor. Like the bishops meeting in Seattle today, we oppose assisting suicides, because suicide is the self-destructive impulse of a mentally ill person. Assisting a suicide is a felony in Washington and Oregon, and the Oregon legislature is expanding that felony to include mailing suicide kits into the state. A bright and wide line separates the crime of assisting a suicide from the medical practice of aid in dying. Blurring that line, or pretending it doesn’t exist, does a tremendous disservice to terminally ill patients and to a society struggling to perfect end-of-life care.

The Catholic Conference’s battle against the medical practice of aid in dying has been vigorous, and it promotes an error of logic by lumping it together with the crime. Their position is not new, but we welcome – and are deeply grateful for – today’s clarity and affirmation that religious objection is the foundation of opposition to the medical practice of aid in dying.

In 1994 Oregon’s then-Archbishop Levada was the first and most vocal opponent of the Oregon movement for Death with Dignity, and everyone understood opposition arose from a particular set of religious beliefs. In subsequent campaigns, religious arguments faded into the background. From 1995 – 2011 opponents concentrated on secular arguments. But 14 years of practice, volumes of medical research and diligent state oversight in Oregon and Washington have disproven every secular argument. No credible claim remains that aid in dying compromises end-of-life care, weakens hospices, threatens people with disabilities, discriminates against women, elders or vulnerable populations, or in fact harms anyone. So we are back to 1994. Only the arguments based on religious teaching remain intact, and the USCCB reinforces those teachings today.

We respect the role of the Conference of Bishops in affirming Catholic doctrine and guiding those of the Catholic faith. But we cannot accept that the instruction of one religious authority would overrule the most personal decisions of individuals of every faith; not in a religiously diverse society. The choice of how to address suffering in a terminal illness must be the province of dying individuals themselves in consultation with their doctors, families, clergy and conscience. Our government has no place policing religious doctrine at the bedside of dying Americans.

The hierarchy of the Catholic Church uses its political and lobbying force across this nation to shape the law, limit patient choice and impose its teachings on all Americans. This year they led the campaign to overturn the Montana Supreme Court’s decision affirming aid in dying for terminally ill Montanans. The policy statements adopted here by the bishops have practical consequences for every American. Their teachings govern Catholic healthcare providers and restrict the choices of all patients – Catholic or non-Catholic – who purchase Catholic health plans or enter Catholic institutions.

The Conference makes special note of the words in the name of our organization, which reflect our values. I’d like to set the record straight.

The Conference’s statements say our compassion focuses on eliminating patients, not suffering. No, our compassion focuses on providing comfort and peace of mind to individuals who fear they will suffer unbearably in their dying. Comfort and peace of mind come from obtaining, or knowing they could obtain, medication to bring about a peaceful death. Patients need not ingest the medication to achieve peace of mind. Every year, one in six dying Oregonians inquires about the Death with Dignity law. Only one in one-thousand die under its provisions. Few use the law, but many are comforted by it. The purpose of prescriptions written under the law is to provide comfort.

The Conference’s statements also say Death with Dignity laws restrict choice. This claim defies logic. Simply adding a healthcare choice in no way pressures people to exercise that choice. People feel comforted, not pressured; and safeguards in the law guarantee it remains this way.

Human choice – the right to make important life decisions – is a part of the liberty and dignity that follow us all our lives, to our deaths. The government in a civilized society, one that protects religious freedom, owes its people no less than that liberty and dignity.

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Take Action: Sign our Open Letter to the U.S. Conference of Catholic Bishops now, and affirm your personal belief that no one – and no institution – should have the power to dictate your choice at the end of your life. www.CompassionAndChoices.org/openletter

Catholic bishops address assisted suicide at conference

by ALLEN SCHAUFFLER
KING 5 News

June 15, 2011
Catholic bishops plan to take a strong stance against Washington and Oregon’s assisted suicide laws. But supporters of those laws were on hand Wednesday at the Conference of Catholic Bishops in Bellevue, Washington.

Catholic Church Amps Up Its Fight Against Aid in Dying

by ANN NEUMANN
The Nation, June 16, 2011

On Thursday the US Conference of Catholic Bishops (USCCB) will release a new document that calls for the end of legal aid in dying. To Live Each Day with Dignity marks a nationwide effort by the Roman Catholic Church to influence how patients will be cared for at the end of their lives. Citing a Death with Dignity bill that passed in Washington in 2008, a ruling protecting the right to aid in dying by the Montana supreme court in 2009 and a spate of state initiatives, a June 1 press release states, “The Church needs to respond in a timely and visible way to this renewed challenge, which will surely be pursued in a number of states in the years to come.”

Barbara Coombs Lee, president of the nation’s largest aid in dying advocacy group, Compassion & Choices, wrote in an e-mail to supporters last week, “What alarms us is their determination to use their standing to undermine end-of-life choice and chastise everyone—Catholic or otherwise—who believes in or practices it.” Though the Catholic Church’s position is not new—opposition to “euthanasia” has been a cornerstone of the “prolife” platform for decades—the elevation of end-of-life issues to the top of the bishops’ agenda this week is affirmation of their commitment to this aspect of healthcare. And it’s not hard to imagine that the USCCB is specifically rebuking Compassion & Choices for their successes: the press release highlights true compassion and choice; To Live Each Day will be released at the USCCB’s Spring General Assembly in Seattle, Washington.

But much more than the legality of aid in dying—commonly known as assisted suicide, which misrepresents the practice, limited as it is to patients with a terminal illness—is at stake. Even if, as Richard Doerflinger, associate director of the USCCB’s Secretariat of Pro-Life Activities, contends, Thursday’s document is a moral statement and not a kick-off to a political campaign to end legal aid in dying, it will serve as marching orders in the coming years for already-mobilized and funded “prolife” activists—whether Catholic, evangelical, Mormon or unaffiliated—who will use it to determine how they vote and organize. That means, as veterans on the abortion rights front will tell you, a heightened assault on end-of-life rights. They’ll also tell you that failing to see the larger implications of the church’s domination of life and death discussions leads to an erosion of patients’ rights, rights that, when lost, are seldom regained.

Under pressure from the Catholic Church and its affiliates, rights of patients across the board could be weakened. From efficacy of advanced directives and living wills (documents used to state patients’ healthcare wishes), to medical proxy laws (that appoint patient guardians), from hospice and palliative funding and regulation, to drug regulation, to laws that govern hospitals, hospital workers and home healthcare aids. But also at stake are the laws that govern inheritance rights, death certificate parameters and legality regarding suicide (which assisted suicide is often equated with). The list goes on.

A focus on aid in dying should illuminate failures in end of life care, of which the US has many. In our current state of crisis—52 million people are uninsured; the United States spends twice as much on healthcare than other developed nations, with inferior results; the population is growing older; the dying are often subject to debilitating futile care in their last days—we can hardly afford ideological diversion. As with the issue of abortion, when the Catholic Church shines a spotlight, Americans get blinding orders, not illumination.

Even typically astute writers miss the point on end-of life care. While Ezra Klein, the Washington Post’s healthcare expert, didn’t endorse Catholic pundit Ross Douthat’s contention that aid in dying should be illegal (though Klein failed to acknowledge that it is legal in three states), he bought the same “slippery slope” argument “pro-life” groups have used for years to oppose and restrict abortion. While Mother Jones’s Kevin Drum refuted Douthat’s religious arguments and Klein’s sources and logic, he too failed to connect the conversation on assisted suicide to the larger crisis in end-of-life care. Neither took meaningful issue with the outsized role the Catholic Church—which operates one-fifth of all hospital beds in the United States according to their own guidelines—plays in this or the healthcare debate.

As Americans face a political, economic and personal crisis over healthcare, we must take the opportunities—like last week’s death of Dr. Jack Kevorkian and this week’s statement by the USCCB—to have meaningful national conversations about who decides what we do with our bodies and what the ramifications of the church’s involvement can mean.

I asked Doerflinger, Is it immoral to end a dying life? Even if it is one’s own?

“If what?” he asked from a cell phone in Seattle.

“One’s own,” I repeated.

“It isn’t one’s own.”

Ann Neumann, a hospice volunteer, writes about religion and end of life.

See this article and others by Ann Neumann at The Nation.

Washington: Physician Aid In Dying Two Years Later

FOR IMMEDIATE RELEASE: Thursday, March 10, 2011
CONTACT: Robb Miller, Executive Director, Compassion & Choices of Washington,
206.669.0902 or rm@blarg.net

The 2010 Washington Death With Dignity Report indicates aid in dying in Washington is safe, legal, and rare, but some terminal patients wait until it’s too late.

SEATTLE, WA – Compassion & Choices of Washington (C&C), a nonprofit organization that advocates excellent, patient-centered end-of-life care and stewards Washington’s Death With Dignity Act (DWDA), today responded to the Washington State Department of Health’s (DOH) report on the state’s first full year of experience with the DWDA. A significant number of patients who received medication died without taking it, showing the benefit of comfort and control the law provides. “Our experience has been that terminally ill patients and their families are benefiting from physician aid in dying,” said Dr. Tom Preston, one of C&C’s medical directors. “The practice of aid in dying in Washington has been infrequent, and comforts many more patients than just those who use it. Patients have benefited from the peace of mind and comfort the law provides. The medical community is integrating aid in dying into the standard of end-of-life medical care. Additionally none of the claims made by opponents during the I- 1000 campaign have come true.”

The DOH reported that during 2010, 87 prescriptions for life-ending medications were written under the provisions of the DWDA compared to 63 during 2009. Of those who received prescriptions in 2010, 51 (59%) self-administered the medication, and 15 (17%) died of their underlying disease. No complications were reported for any of the patients who used the law to achieve a peaceful death. Contrary to opponents’ predictions that only a few doctors would participate, prescriptions were written by 68 different physicians, indicating that aid in dying is being integrated into end-of-life medical practice.

Because the law took effect in March of 2009, the 2010 data represents the first full year of Washington’s experience with the DWDA. When compared to the total number of deaths from all causes in Washington, patients who died after self-administering life-ending medication continue to represent a very small fraction of Washingtonians who died in 2010 – approximately 1/10th of one percent. This corresponds to approximately 10 DWDA deaths per 10,000 total deaths.

Consistent with 2009 report, the primary reasons for electing to use the DWDA were loss of autonomy, losing the ability to participate in activities that made life enjoyable and loss of dignity. The vast majority of patients who used the law had cancer, were on hospice at the time of death and died at home. Because only patients who pass psychiatric or psychological evaluations may participate in the DWDA, the number of psych evaluations reported in the DOH’s annual reports does not represent the total number of psych evaluations that actually occurred.

Joyce Rizzo, of Puyallup, was one Washington terminal patient who did use the DWDA. Joyce’s husband, Tony Rizzo, said his wife found great comfort having a choice when it came to the end of her long, tough battle against lung cancer. “Joyce had fought lung and neck cancer for three years. She underwent radiation treatments, chemotherapy and had part of her lung removed,” said Tony, who was Joyce’s primary caregiver and was with her when she died. “When the tumors kept growing and the experimental treatment was unsuccessful, the DWDA provided her with peace of mind. She died at home, surrounded by family. Joyce
was able to have the peaceful, dignified death she desired because she could use the DWDA.”

Lonnie Maxfield, of Olympia, who is terminally ill with ALS (Lou Gehrig’s disease), said that the DWDA provides him with peace of mind, “I’m very grateful for our Death with Dignity Act, and that my doctor respects my end-of-life choices. I have the support of my family, and this and having the medication available provides me with some measure of control for a peaceful and dignified death.”

Dr. Preston said, “Patients can discuss this with their physicians as one of a full spectrum of care options at the end of life. It is never too early to begin adiscussion with your doctor about the options you would want to consider if you were diagnosed with a terminal illness. We encourage terminal patients to speak with their doctor and C&C as soon as they have questions or concerns. Most people don’t understand that there are two waiting periods, including a 15-day waiting period between oral requests, and that patients are required to be evaluated by two physicians. This takes time. Don’t wait until it’s too late.”

“The reports required under the DWDA confirm the safety of physician aid in dying. The law is working exactly as voters intended,” said Dr. Preston. “Doctors can feel safe responding to requests from their patients for aid in dying. The practice is having a significant, positive impact on Washingtonians’ end-of-life experiences, even though it is rarely used. Knowing they can access prescribed medication and take control of their dying if suffering becomes intolerable, improves patients’ quality of life in their final days.”

C&C provides expert consultation, advice, information and emotional support for patients and families facing the end of life, and if requested, a personal presence at the time of a Death With Dignity. To request C&C’s client services call 877- 222-2816 toll-free. C&C also provides information, medical expertise to participating physicians and other medical providers. Physicians are invited to request C&C’s Physician Guide to the DWDA. All services are free of charge, and confidentiality is strictly protected.