End-of-Life Choice, Death with Dignity, Palliative Care and Counseling

Archive for June, 2011

New York’s Palliative Care Information Act: Flawed but Needed

by Robert A. Milch
Bioethics Forum

It’s been observed that the last thing today’s physicians need is something else to make them feel guilty, inadequate, or coerced. It shouldn’t be surprising, then, that there is some displeasure with implementation of New York State’s Palliative Care Information Act, which mandates that clinicians offer information or counseling about palliative care to “terminally ill” patients or their surrogates should they choose to accept it. Failure to comply with what, by fiat, is now deemed a standard of practice can be punished by fine.

As could be expected, demagogic statements about “death panels” and euthanasia have emerged, detracting from discourse with their shrillness. Opposition from the New York State Medical Society, which waved the bloody shirt of the doctor-patient relationship undermined – almost a pro forma response to regulation – has been disappointing to me and many others. More thoughtful and articulate responses have been made by physicians such as Astrow and Popp in the New England Journal of Medicine, who fear that “a legalistic solution is likely to prompt a merely legalistic response”.

The ills of the world will not be cured by legislation. But there are overwhelming data that the provision of palliative care and communication about it currently are inconsistent, inadequate, or untimely. The public and the medical profession long have recognized the unmet, ongoing needs for improved palliative and end-of-life care. Well-meaning advocacy and position statements, even ethical and professional standards, have proved inadequate in addressing the problems. The legislature, however ham-handedly one might view the action, has responded to nudge us toward an overdue correction. It seems incongruous that a profession advocating evidence-based practice might denigrate efforts to codify best practice standards.

Certainly the law is imperfect, and there are important concerns to be addressed and questions to be answered. Pragmatically, if this is the medical equivalent of another legislative “unfunded mandate,” how can institutions and practices support its application, and at what costs? How will compliance be monitored, and by whom – hospital staffs? The Department of Health? Are there quality measures to be applied, and if so what are they? Are legitimate claims for palliative care really dependent on the administrative definition of “terminal?” The list goes on.

The hardest work, though, will likely be twofold. First, we need to assure adequate resources and compensation of programs and trained personnel for palliative care services in the inpatient and outpatient venues, serving in both consultative roles and direct care. More important, however, we need to provide meaningful training for physicians and practitioners in the communication skills required to make discussions around palliative and end-of-life care substantive.

No more than a surgeon can perform an operation well having only read an anatomical atlas, so too this training needs more than didactics and PowerPoints. To be effective, education and training need be experiential, mentored, and constructively critiqued. Many medical schools and academic centers are offering models of such programs, but there is a need to create new ones for participants of disparate experiences and specialties, and that will be a challenge. But failure to do so risks having the worst fears realized – that is, that discussions about palliative care will be relegated to the checklist status of a smoking cessation referral.

Rather than threaten the doctor-patient relationship, these efforts stand to reinforce it in the noblest ways. For both doctors and patients, the efforts can deepen the understanding of an illness in a person as distinct from a disease in an organ, as well as suffering as meaningless endurance. Conversations can afford the opportunity to empathize and compassionately communicate concern while assuring ongoing care and nonabandonment, even as the goals of care change. For most, that should be viewed as reassuring, not threatening.

However flawed the New York law is, it gives impetus to begin to meet crying needs. It aims to change behaviors and systems with misaligned incentives that serve as obstacles to appropriate care. Doing a good job of discussing palliative care offers the chance to reclaim lost ground of professionalism and better serve our patients and their families. We stand to better meet our charge for the relief of suffering.

Robert A. Milch, M.D., F.AC.S., a pioneer in hospice care, is a physician at The Center for Hospice and Palliative Care, near Buffalo. He received the 2010 Hastings Center Cunniff-Dixon Physician Awards in the established physician category for exemplary end-of-life care.

DOGMA VS. DIGNITY: National End-of-Life Care Expert Responds to Roman Catholic Bishops’ New Attack on End-of-Life Choice

The U.S. Conference of Catholic Bishops (USCCB) has launched a new attack on
terminal patients’ end–of-life choice and aims to impose its religious orthodoxy on
ALL Americans. Instruction from the USSCB prompted calls for doctrinal purity
among lawmakers, healthcare institutions and universities.

The USCCB adopted a statement last week at its national conference in Bellevue,
Washington, including the doctrinal rationale for opposing aid in dying: “As
Christians we believe that even suffering itself need not be meaningless …
suffering accepted in love can bring us closer to the mystery of Christ’s sacrifice
for the salvation of others.”

The Roman Catholic bishops specifically criticized Compassion & Choices, the
nation’s largest nonprofit organization advocating for end-of-life care. The
bishops’ statement distorts the values and work of Compassion & Choices’ and
misrepresents our work, claiming it “undermines patients’ freedom by putting
pressure on them.”

The Roman Catholic bishops’ statement is full of reckless, unsubstantiated
accusations such as that aid in dying advocates have “voiced support for ending the
lives of people who never asked for death.” With tactics reminiscent of
McCarthyism, Catholic operatives then launched attacks on the character and
loyalty of political adversaries. All Americans should be alarmed, as people who
take instruction from the Bishops talk of imposing “sanctions” on political leaders,
educators and medical care providers who disagree. One in ten Americans in a
hospital is in a Catholic hospital.

Barbara Coombs Lee, president of Compassion & Choices, responds to the
bishops’ new attack on patient choice, “We welcome the Catholic bishops’ clear
statement that opposition to aid in dying is a matter of religious belief. While we
respect religious instruction to those of the Catholic faith, we find it unacceptable
to impose the teachings of one religion on everyone in a pluralistic society. We
believe end-of-life care should follow the patient’s values and beliefs, and good
medical practice, but not be restricted against the patient’s will by Catholic Church

Through hospitals, insurance plans, nursing homes and hospices, Catholic
institutions are directly responsible for implementing Catholic doctrine in
healthcare. In 2001, 31 percent of Americans received care in a Catholic facility.

Writing in a high-profile Catholic publication five days after the bishops spoke, a
Catholic spokesperson singled out aid-in-dying supporters within the Church:
theologians, bioethicists and law professors on the faculty at Jesuit universities.
Because their views conflict with the bishops’ on end-of-life choice, the
spokesperson recommends censorship. Do such accusations of impurity in thought
not echo our nation’s darkest history of blacklisting intellectuals? Will tenure track
interviewers soon inquire, “Are you now, or have you ever been, a member of any
organization that supports aid in dying?”

The false claims of the Roman Catholic bishops and other Catholic
spokespeople include:

“(Compassion & Choices) concealed its agenda … (that) promotes neither free
choice nor compassion.”

“Leaders of the ‘aid in dying’ movement in our country have also voiced support
for ending the lives of people who never asked for death, whose lives they see as
meaningless or as a costly burden on the community.”

“Studies indicate that untreated pain among terminally ill patients may increase
and development of hospice care can stagnate after assisted suicide is legalized.”

“‘AID IN DYING CROWD LOVES ABORTION’ … Those who delight in
helping people die like to invoke the values of compassion and choice. … Donors
include … the NYS NARAL Foundation. … Pro-abortion and pro-euthanasia—
that’s what makes C&C tick.”

“It’s one thing to state your position based on your religious beliefs, and quite
another to falsify, bully, sanction, lobby and impose that religious belief on
others,” said Coombs Lee. “The bishops misstate our work, our beliefs, our
mission and the fourteen years of Oregon experience with aid in dying. That
experience shows better end-of-life care, more choice and more peaceful deaths.”

We welcome significant opportunities to debate or discuss the appropriate role of
Roman Catholic doctrine on end-of-life choice in a religiously diverse society.

To schedule an interview with Barbara Coombs Lee, please call Steve
Hopcraft, 916.457.5546; [email protected]

For more information please visit www.compassionandchoices.org

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.

Catholic Political Operatives Follow the Bishops

As I wrote last week, Compassion & Choices welcomes the affirmation by the United States Council of Catholic Bishops (USCCB) that religious objection is the foundation of their opposition to aid in dying. The bishops’ battle against the medical practice of aid in dying has been vigorous in the past, though cloaked in secular arguments about protecting the vulnerable or promoting palliative care. The statement the USCCB adopted last week asserts “suffering accepted in love can bring us closer to the mystery of Christ’s sacrifice for the salvation of others.” It’s refreshing and important to see that theological rationale established at the forefront of political opposition to aid in dying.

Never would I intrude in another person’s expression of religious faith and belief. I have no desire to interfere with those who wish to emulate the Passion of Christ on their death bed. Thomas Lynch wrote eloquently about his mother embracing this framework for her suffering in his delightful book, The Undertaking: Life Studies from the Dismal Trade. His deeply respectful and loving description is enormously moving.

The Conference of Bishops was already clear in its opposition to aid in dying. So one wonders about the purpose of this new statement. As LifeSiteNews reported:

During a 2004 meeting of the bishops of the United States an agreement was made to sanction Catholic politicians who support abortion.  At a press conference today at the 2011 Spring General Assembly of the U.S. Conference of Catholic Bishops (USCCB), LifeSiteNews asked if those same sanctions would apply to Catholic politicians who support assisted suicide.

Cardinal Daniel DiNardo of Galveston-Houston, chairman of the USCCB Committee on Pro-Life Activities replied that the question of sanctions has not “been completely addressed internally.”  He did, however, stress that once approved, the new policy statement on assisted suicide – which is to be voted on by the bishops Thursday – would be made known in the public square, “and the political square as well.”

As soon as the Bishops voted, lower level operatives went to work in “the political square.” It got personal. “AID IN DYING” CROWD LOVES ABORTION wrote Catholic League president Bill Donohue, characterizing our supporters as “those who delight in helping people die,” and slandering some – by name – with epithets like “gay phenom” and “notorious.” No facts accompanied these accusations. Donohue falsely calls me “a champion of abortion rights,” when I’ve taken no public position on access to abortion. I can think of no reason to link me and other aid-in-dying supporters to abortion except to tap into a ready-made pool of anger, hate and violence.

The policy statement itself claims, “Leaders of the ‘aid in dying’ movement in our country have also voiced support for ending the lives of people who never asked for death, whose lives they see as meaningless or as a costly burden on the community.”

This kind of reckless, unsubstantiated accusation, and demagogic attacks on the character and loyalty of political adversaries is what we call McCarthyism. If it alarms you to see the Catholic Bishops playing this kind of slanderous hardball, consider what happened next.

Five days after the bishops spoke, Patrick Reilly, in Crisis Magazine, named five aid-in-dying sympathizers within the Church: theologians, bioethicists and law professors on the faculty at Jesuit universities. Because their views conflict with the bishops’ on end-of-life choice, Reilly says “they violate the mission of a Catholic university” and recommends censorship. Do such accusations of impurity in thought not echo our nation’s darkest history of blacklisting intellectuals? Will tenure track interviewers soon inquire, “Are you now, or have you ever been, a member of any organization that supports aid in dying?”

Many religious scholars believe Catholic teaching derives not only from the Bishops, but also from the wisdom of the faithful (sensus fidelium), and the wisdom of theologians. “Real people bear both the grace and the burden of thinking,” wrote John J. Hardt in America, The National Catholic Weekly, “as the church does about the meaning of living and dying.” Or as Lisa Fullam has written in Commonweal Magazine,

[O]ur tradition has been enlivened time and time again by dissenters who voiced positions in tension with that of current magisterial teaching. I’m not referring to mere cranks, but informed and faithful dissent which serves to call the Church to reexamine itself on matters of importance.

Dismissing all dissent within the Church as immature and unbalanced hardly contributes to our reputation as a tradition of fearless inquiry. Rather, we are seen as people who think in mindless lockstep. Why should people outside the Church engage in dialogue with a magisterium which disallows dialogue and respectful disagreement internally?

Some, however, see such dissent as disloyalty. Mr. Reilly, whose Crisis article named names, is president of the Cardinal Newman Society, “a national organization to advocate and support the renewal of genuine Catholic higher education.” “Genuine” I gather means “without dissent.”

Unsubstantiated character assassination. Lists of disloyalists. These are the tactics that in the ‘50s led Americans to wonder, as Army attorney Joseph Welch asked aloud of Joe McCarthy, “Have you no sense of decency, sir? At long last, have you left no sense of decency?”

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.


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