End-of-Life Choice, Palliative Care and Counseling

Dogma v Dignity

Two Movements Approach the Tipping Point

After years of gains and setbacks, the national movement for same-sex marriage is enjoying a period of remarkable success.  Massachusetts and Connecticut became first adopters in 2004 and 2005 and that came after twenty years of advocacy. Turmoil followed, especially in California. But in 2009 three states (Iowa, Vermont, New Hampshire) approved same-sex marriage. New York followed last June, and now the Washington and Maryland legislatures have acted in quick succession.  Delaware’s governor predicts his state is not far behind.

It’s making me think about similarities between the movement for death with dignity and LGBT dignity. Like other movements for human liberty, seminal events mark a trajectory toward inevitable success.

1. It starts with consciousness-raising.  As human rights lawyer Sylvia Law describes, one day a light comes on. People experience their own private “Aha!” moment. Then more do, and multiple sparks of recognition illuminate the injustice for all to see.  In the 1970s LGBT advocates worked hard to muster light in the darkness of false assumptions, degradation and violence.

For end-of-life choices, common wisdom was that with death, comes suffering.  We’ve heard doctors tell a family, “We all have to suffer some, don’t we?”  In our movement sparks first fly when people witness end-of-life agony and indignity and think, “This is not right.” Grief magnifies outrage, and awareness dawns that American law and medicine fails us at life’s end.

2. Soon fear, shame and guilt no longer keep outrage in check. People in our movement share this with LGBT communities.  We all have stories of deaths of loved ones. Maybe we shrank from the bedside and let doctors continue with tubes, needles and machines long after any good could come of it. Maybe we heeded an urgent plea to increase the morphine and speed death’s advance. Or maybe we didn’t and feel guilty for that. Maybe Dad shot himself when he was dying of cancer and the family lives with that trauma.

Powerful forces conspire to keep talk of death taboo. We’re told it’s wrong to seek the relief of death when cancer’s final agonies take hold.  But telling our stories at kitchen tables, church basements and community gatherings turns fear into courage, grief into action. My most moving experiences come when we open a conversation about end-of-life choices, see pent-up emotion flood the room and see how eagerly people sign up for advocacy and public service.

3. The Vatican fights both movementsCatholic hierarchy uses its political power to oppose both movements. With hysterical doomsday rhetoric, it denounces gay and lesbian human rights as an “ideology of evil” and the movement for end-of-life choices as a “culture of death.”  To defeat Death with Dignity bills, local bishops have deployed their lobbyists and issued threats of shunning and denunciation from the pulpit to non-Catholic lawmakers and denial of the sacrament of communion or excommunication, to Catholic ones.  In a surprising turn of events, Roman Catholic leaders in Maine announced they will play no role in fundraising, staffing, advertising, or campaigning against marriage equality.

I hope Catholic leadership’s decision to stay its hand in Maine arises from a calculation of changing sentiment in society.  If Gays and Lesbians are beyond religious oppression it’s because they are no longer vulnerable to shame and guilt for who they are or the rights they seek. Today lawmakers are more likely to embrace their Gay and Lesbian sons and daughters publicly than abandon them in silence and vote against their liberty.

If the pattern holds, it won’t be long before lawmakers are telling stories of the tragically painful deaths they’ve witnessed, rejecting the rhetoric of shame and voting courageously to empower people with choices at the end of life.

Good News From Kentucky!

2011 closed with good news out of Kentucky. On Friday Governor Steve Beshear refused to approve a Louisville hospital merger that threatened patient choice. Compassion & Choices, MergerWatch, the National Women’s Law Center and other national advocacy organizations joined local activists to raise constitutional and public policy questions regarding potential threats to end-of-life and reproductive care. In announcing his decision, Gov. Beshear noted “significant legal and policy concerns.”

Religious doctrine limits patient choice in over 600 of our nation’s hospitals, nursing homes and HMOs. When a Catholic healthcare institution merges with a non-sectarian one, the Ethical and Religious Directives for Healthcare (ERDs) invariably control care provided by the merged entity. Compassion & Choices is committed to joining patient rights advocates to oppose the imposition of religious restrictions wherever the threat arises.

This proposal ceded control of Louisville’s only public hospital to a Catholic healthcare company (St. Joseph Health System), and placed healthcare decisions in the hands of the local bishop and the United States Conference of Catholic Bishops. We applaud Governor Beshear for exercising good stewardship and ensuring that University Hospital (UNL) serves the public interest and needs for future generations of Kentucky citizens. “If this merger were allowed to happen,” Beshear said, “UNL and the public would have only indirect and minority influence over the new statewide network’s affairs and its use of public assets.”

Despite assurances from architects of the merger, loss of public influence in healthcare could have disastrous consequences for the people who depend on publicly funded healthcare. The people could never again rely on their public institution to place the highest priority on community needs. The ERDs that govern Catholic healthcare enforce Catholic doctrine. Staff and administrators must balance that doctrine, when possible, with community needs. Some options remain forbidden, no matter how great or pressing the need may be. This balance can leave the community with uncertain and unpredictable service.

A doctor at St. Joseph Hospital – a defender of St. Joseph’s Catholic identity – wrote of the confusing and contradictory statements made by hospital officials:

An Oct. 24 (Louisville) Courier-Journal article noted that on June 14, U of L Dean Halperin, “made a promise that we’ll respect the ERDs of the Catholic Church,” and on June 30, University Hospital CEO James Taylor stated, “we’ve also made the commitment that by joining the network with (SJHS) … we will adhere to the ERDs.”

Now that a merger might be imminent, a different stance has surfaced. The merger partners state in an Oct. 19 Metro Board of Health (BOH) release that University Hospital “will not become a Catholic hospital and will not be required to follow the ERDs.”

The Courier-Journal calls this “legal mumbo-jumbo.” Nonetheless, University Hospital spokesman David McArthur would not concede that it was a position change, but “an evolution of our explanation.”

Without governing authority, UNL and the citizens it serves could be forever tossed like a kite upon the changing winds of “evolving explanations” and changes in Church policy. In recent decades, the Vatican has become more conservative and U.S. bishops have required stricter obedience from Catholic healthcare institutions. No one can predict how Catholic doctrine or enforcement may change in the future, and once a public institution is lost, its accountability to the public welfare is lost forever.

So we welcome the new year with a celebration of effective community advocacy and a toast to elected officials who act in the public interest. Kentucky Reps. Mary Lou Marzian and Tom Burch helped inform the governor of advocates’ concerns and urged him to stand up for all Kentucky residents and their right to comprehensive healthcare.

We remain watchful. Announcing his decision, the governor said “… I have determined that this proposed transaction is not in the best interest of the commonwealth …” The emphasis was his. Compassion & Choices will resist any proposal – in Kentucky or elsewhere – that fails to safeguard patient rights to a full range of end-of-life healthcare choices

Hospital mergers and protecting patient rights

In Louisville, Kentucky, Compassion & Choices is working to stop a proposed hospital merger from diluting patient rights. Under the proposed merger, the three hospitals would follow Catholic health care directives, including those that affect end-of-life care.

As government affairs director for Compassion & Choices, I want to give an update on our efforts in Louisville. I have been working with our partners MergerWatch and the National Women’s Law Center and many others in the Louisville area. We can’t let the imperatives of Catholic doctrine override patients’ end-of-life wishes. As reported this summer in the Louisville Courier-Journal:

Under the merger proposal, University Hospital will join Jewish Hospital & St. Mary’s HealthCare and St. Joseph Health System, whose parent company is Denver-based Catholic Health Initiatives. CHI will own 70 percent of the combined operations, assuming regulators approve.

When the merger was announced last month, officials said all the merged hospitals will follow Catholic health care directives. And while many wealthier patients could simply choose a different hospital, indigent patients have little choice but University Hospital for treatment, including end-of-life care.

“I don’t like what I’m hearing with this merger; patients have rights till the day they die,” said Lorri Keeney, whose 88-year-old mother died of natural causes in a nursing home under hospice care through Hosparus in May 2010 after numerous hospital visits. “I would’ve taken my mother out of the hospital if they had told me I had to abide by their doctrine.”

Keeney’s mother, Eleanor Caram, was Jewish and had a living will. But Catholic medical directives, which merger partners have agreed to abide by, say living wills won’t be honored if they go against Catholic moral teachings, which are open to interpretation.

If the merger goes forward, will the hospitals honor the carefully considered decisions people express in advance directives? We brought that question to the attention of the Louisville Metro Board of Health, Attorney General Jack Conway, Governor Steven Beshear, Secretary of Finance Lori Flanery, Louisville Mayor Greg Fisher and Kentucky lawmakers, Reps. Tom Burch and Mary Lou Marzian.

The Louisville public and others also raised questions. The American Civil Liberties Union and the Louisville-Courier asked Attorney General Conway to confirm that University Hospital is a public entity, and so must release its records related to the merger.

Conway, who is up for re-election, heard the message loud and clear. In a September 28th interview with the Courier-Journal editorial board he spent about 10 minutes of time on the proposed merger. Watch his response, beginning at around 5:00 minutes into this video.

On October 6, the attorney general issued an open records decision (ORD): University Hospital is a public institution and, therefore, accountable to the public’s interest.

Conway said University Medical Center Inc., which runs the hospital, “was established and created and is controlled by the University of Louisville.”

The decision does not directly address the merger but, as Conway suggested in the interview, it raises the likelihood patients’ rights advocates will challenge the merger, based on constitutional grounds related to the establishment clause.

The ruling could affect the merger because of the religious implications. Saint Joseph is owned by Catholic Health Initiatives, which follows Catholic directives that prohibit abortion, sterilization and euthanasia.

On October 19th, community members packed Louisville’s Memorial Auditorium at a forum sponsored by the board of health.

Partners in the controversial merger of three Kentucky hospital systems fielded dozens of questions about reproductive and end-of-life care, health insurance for employees and other issues at a community forum Wednesday that drew hundreds of people.

The following day in an editorial, the Courier-Journal distilled the concern we share with the public and other patients’ rights advocates:

The issue is whether a public hospital, operated by a public university and charged with care of the indigent population of this region (funded by tens of millions of public dollars) should have legal medical policies restricted by the rules of any religious group.

The Governor still must weigh in on the approval of this merger along with the Secretary of Finance and they have offered nothing to suggest a timetable. Compassion & Choices and its partners will continue to urge all parties to fully review the proposed merger and approve it only if the parties involved will preserve continued access to vital healthcare services, including care at the end of life.

U.S. Catholic bishops misunderstand our death-with-dignity laws

Meeting in Bellevue, the bishops take a firmer line on physician-assisted aid-indying
laws and make allegations about abuses that are not supported by the
experience in Oregon and Washington.

By Harris Meyer, July 5, 2011

The U.S. Conference of Catholic Bishops’ policy on physician-assisted suicide,
approved at their national meeting in Bellevue last month, is the latest move by
Roman Catholic leaders to intervene in Americans’ personal health care decisions.

The eight-page policy, which the bishops passed 191-1 at their annual spring
meeting, is full of inaccurate and misleading statements about the Death with
Dignity laws in Washington and Oregon and the policy positions of the laws’
supporters. It ignores 14 years of experience in Oregon and two years in
Washington. The head of Compassion & Choices, the main group supporting those
laws, criticized the bishops’ policy statement as “full of reckless, unsubstantiated
accusations.”

The bishops’ statement warns that the voter-approved Death with Dignity laws —
which allow terminally ill, mentally competent adult patients to receive
medications from their doctor to end their lives — essentially legalize murder. And
it makes the stunning claim that U.S. leaders of the Death with Dignity movement
in effect advocate ending the lives of people who have not sought help in dying.

“A society that devalues some people’s lives, by hastening and facilitating their
deaths, will ultimately lose respect for their other rights and freedoms,” the bishops
said. “Taking life in the name of compassion also invites a slippery slope toward
ending the lives of people with non-terminal conditions.”

The new policy, “To Live Each Day with Dignity,” is the U.S. church’s first
official policy on aid-in-dying, which also is legal in Montana under a 2009
Montana Supreme Court ruling. The policy follows increasingly aggressive efforts
by the bishops to require Catholic health care facilities and providers to insert and
maintain feeding and hydration tubes in terminally ill patients — even those who
have written advance directives stating they don’t want them.

The bishops also have cracked down on Catholic hospitals that performed tubetying
operations for women who are not going to have more babies. Last year, a
bishop expelled St. Charles Medical Center in Bend, Ore., a century-old hospital
founded by nuns, from his diocese for refusing to stop performing tubal ligations.

These policies matter because the bishops oversee more than 600 Catholic
hospitals and hundreds of Catholic nursing homes, assisted living centers, and
hospices.

Some Catholic ethicists and administrators in Catholic health facilities have
expressed concerns about the bishops’ aggressive new mandates. One worried
Catholic hospital administrator who didn’t want to be named criticized the bishops’
2009 ethical and religious directive requiring Catholic health facilities to provide
feeding and hydration tubes to patients with chronic and irreversible conditions —
including persistent vegetative state, massive stroke, and advanced Alzheimer’s
disease. The administrator told me the directive is a “slippery slope” that could
lead to widening disregard for patients’ end-of-life wishes.

But there is growing pressure on everyone within the Catholic establishment to
hew to the party line. A new article in Crisis Magazine by Cardinal Newman
Society president Patrick J. Reilly called out prominent theologians at four major
Jesuit universities who have supported the physician-assisted suicide movement.
These professors “have done more than betray the Catholic Church,” Reilly wrote.
“When professors deny the truths of faith and disregard the common good —
especially of those whose lives are snuffed out prematurely — they violate the
mission of a Catholic university.”

Barbara Coombs Lee, president of Compassion & Choices, a national group that
supports and monitors patients using the Death with Dignity laws, blasted the
bishops’ statement on physician-assisted suicide and what she called the church’s
McCarthyesque attack on Catholic dissenters. “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,” she said in a written statement. “The
bishops misstate our work, our beliefs, our mission and 14 years of Oregon
experience with aid in dying. That experience shows better end-of-life care, more
choice, and more peaceful deaths.”

The bishops’ statement on physician-assisted suicide claims leaders of the aid-indying
movement support “ending the lives of people who never asked for death,
whose lives they see as meaningless or as a costly burden on the community.” But
the Washington and Oregon laws spearheaded by Compassion & Choices set out a
detailed procedure allowing only terminally ill patients to ask a physician to
prescribe the lethal medication; that doctor and a second doctor independently
determine whether the patient likely has less than six months to live, is mentally
competent, and made the request voluntarily.

At a June 15 news conference in Seattle, Coombs Lee stressed that Compassion &
Choices opposes providing aid-in-dying to anyone who doesn’t meet the legal
criteria. “A bright line separates assisting suicide, which is a felony, from the
medical practice of aid in dying,” she said. “To blur that line does a grave
disservice to terminally ill patients.”

The bishops also claim that people with chronic illnesses or disabilities which
are life-threatening only if they don’t receive treatment could qualify for lethal
prescriptions under the Death with Dignity laws. “Thus the bias of many ablebodied
people against the value of life for someone with an illness or disability is
embodied in official policy,” they said.

There’s no evidence for that assertion. The Oregon and Washington laws define a
qualifying terminal disease as “incurable and irreversible.” Dr. Tom Preston,
medical director of Compassion & Choices of Washington, said Compassion &
Choices would never consider working with patients whose condition could be
reversed or effectively treated except to advise them they didn’t qualify under the
law.

Another unfounded argument by the bishops is that offering terminally ill patients
the option of assisted suicide undermines effective pain management and palliative
and hospice care. In fact, studies show that the overall use of hospice care
increased in Oregon to one of the highest rates in the country after the Death with
Dignity law took effect in 1998. In Washington and Oregon, more than 80 percent
of patients who received lethal prescriptions and died in 2010 were enrolled in
hospice — far higher than hospice participation rates nationally. “We insist on
good comfort care,” Preston said.

The bishops further contend that terminally ill people seeking aid in dying
commonly suffer from mental illness such as depression, and that Death with
Dignity laws and proposals ignore this issue. “Even a finding of mental illness or
depression does not necessarily prevent prescribing the [lethal] drugs,” they said.

Supporters of aid in dying do worry about clinically depressed patients receiving
lethal prescriptions. But Dr. Linda Ganzini, a psychiatrist at Oregon Health &
Science University who has consulted on dozens of Death with Dignity cases and
has studied the issue, told me her experience is that most people who want assisted
suicide do not have depression or another mental health condition that would affect
their decision. And if either of the two physicians who independently evaluates
each patient’s eligibility thinks there is a possible mental health issue, that doctor
must order a psychological evaluation. Under the Oregon and Washington laws,
patients cannot receive a lethal prescription if their judgment is found to be
impaired.

Finally, the bishops argue that dying patients’ pain can be alleviated through
competent medical care, freeing them to focus on “the unfinished business of their
lives, to arrive at a sense of peace with God, with loved ones, and with
themselves.” In contrast, they said, assisted suicide “results in suffering for those
left behind — grieving families and friends, and other vulnerable people who may
be influenced by this event to see death as an escape.”

But Tony Rizzo of Puyallup, a self-identified Roman Catholic, said he
“respectfully disagrees” with the bishops based on his and his wife Joyce’s
experience at the end of her three-year battle with cancer. At Compassion’s June
15 news conference, Rizzo described how his wife of 43 years was suffering
“excruciating” pain, despite her pain medication. She asked for and received a
lethal prescription under the Death with Dignity law, and used it to end her life last
September.

“Joyce was facing a painful and difficult death, and there was absolutely no hope,”
he said through tears. “She obtained the peaceful, dignified death she desired. The
whole family supported her decision. I shudder to think of the pain she would have
experienced without the medication and without that choice, which the bishops
would deny her.”

It would appear that the bishops need to take off their black robes, visit a hospice
or hospital ICU, and silently watch and listen to expert staff work with terminally
ill patients.

For more information please visit www.compassionandchoices.org.

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
doctrine.”

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; steve@hopcraft.com

For more information please visit www.compassionandchoices.org