End-of-Life Choice, Palliative Care and Counseling

Posts TaggedBishops

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.

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?”

Bishop cuts ties to hospital over birth control

By JEFF BARNARD Associated Press Writer
Feb 16, 2010
GRANTS PASS, Ore. (AP) — The Catholic Church is ending its long-standing relationship with St. Charles Medical Center in Bend over a surgical birth-control technique.

Diocese of Baker Bishop Robert Vasa said Tuesday the church can no longer sponsor the hospital because it continues to offer tubal ligation, which leaves women unable to get pregnant and is specifically prohibited by church teachings. “Pregnancy itself is not a disease, even though in our culture we treat pregnancy as a disease,” Vasa said. “So this prevents the function of a properly functioning organ under the guise of health care.

“It would be misleading for me to allow St. Charles Bend to be acknowledged as Catholic in name while I am certain that some important tenets of the Ethical and Religious Directives are no longer being observed.” Catholic Mass will no longer be celebrated in the hospital chapel, and church property not needed by the hospital will be returned, Vasa said.

The name of the hospital remains St. Charles, and the decision does not apply to affiliated facilities in Redmond and Prineville, which never were tied to the church, Vasa added. The hospital does about 235 tubal ligations a year, and Vasa and the hospital had been in negotiations over the issue for a few years. They finally decided that neither could bend from their positions.

“We just felt we have been offering these procedures for decades and we have an obligation to the patients in our community to offer the procedures they need,” said James Diegel, president and CEO of Cascade Healthcare Community President, the hospital’s parent company. “This should have no impact on our operations or finances or anything. It’s just a severing of an historical relationship that has been in place for 90-plus years.

“The hospital was founded in 1918 by the Sisters of St. Joseph of Tipton, Ind., and the order’s last administrator retired in 1988, serving on the board until 2000. The hospital was taken over by a local nonprofit organization in the 1970s. The hospital would continue to look to church directives for guidance, Diegel added.

“This doesn’t change who we have been, who we are and who we will continue to be going forward,” Diegel said.

READ THE PRESS RELEASE HERE >>

Pope vs. Doctors: How New Vatican Orthodoxy Undermines Medical Ethics and Imperils Your Health

 Jacob M. Appel, Bioethicist and medical historian

The Huffington Post

Posted: February 10, 2010 05:31 PM

Catholic hospitals, which boast a long and admirable history of caring for the seriously ill and indigent in the United States, have for many years finessed the challenges of serving two disparate and often incompatible masters. On the one hand, the nation’s 573 Church-run hospitals and their physicians are not permitted by Vatican policy to offer services or advice to patients when doing so violates Catholic teaching. In theory, prohibited activities range from providing abortions and assisting suicides to urging patients with HIV to wear condoms when engaged in unprotected sex or telling bipolar women on lithium to use contraceptives to prevent birth defects. On the other hand, these hospitals–which serve about one third of all patients in the nation–are also quasi-public institutions, and their physicians and nurses are bound by the same ethical obligations that govern all other members of their professions. They must obtained informed consent, honor patient autonomy, and offer medical care in line with the clinical standards of their colleagues at secular institutions. While a latent tension often exists between these competing allegiances, two recent developments relating to Church policy have set medical ethics and Catholic doctrine on an unfortunate collision course.

The first of these disturbing Church salvos against mainstream medical ethics is to be found in the newly promulgated Directive 58 of the United States bishops’ body governing Catholic health care services. This edict states that, barring certain specific circumstances, such as imminent death, Church doctrine prevents competent patients from refusing artificial nutrition and hydration. William Grogan, a religious advisor to Cardinal Francis George of Chicago, explained to the media that death would have to be expected within two weeks for a patient to turn down a feeding tube. In other words, according to current Catholic teaching, a cancer patient in a coma with a life expectancy of four weeks must now be force-fed–no matter what his prior instructions stated and without regard to his family’s wishes. All comatose and vegetative patients will be required to accept nutrition and hydration indefinitely, even if they leave behind air-tight living wills objecting to such “heroic” and invasive measures. This extreme policy apparently applies to all patients receiving care in Catholic-run hospitals, whether or not they are Catholic. Since United States courts have consistently accepted that mentally-competent patients have a right to refuse care if their wishes are clear and documented, these rules may well be illegal. However, even if Directive 58 is not a violation of the law, it is a gross breach of accepted standards of medical ethics. No doctor or nurse in the United States may provide such unwanted nutrition and hydration without defying a well-established code of professional conduct. It is likely that any provider who acted in this paternalistic and unequivocally immoral manner would lose his or her license. In the very least, the provider would become a pariah among his colleagues.

A second Church-instigated challenge to medical ethics has arisen as a result of a grass roots protest by anti-abortion organizations in Pennsylvania against the well-regarded St. Mary’s Medical Center of Langhorne. In this case, Dr. Stephen Smith of St. Mary’s performed an ultrasound on an expecting mother and confirmed that the fetus had polycystic kidney disease, a fatal condition in infants. Smith recommended an abortion. When the pregnant women sought a second opinion, a midwife at Mother Bachman Maternity Center in nearby Bensalem, operated by the St. Mary’s, also recommended termination. The mother refused, which was certainly her prerogative, and the infant died two hours after birth. When local abortion opponents publicized Smith’s advice, a private citizen named Joseph Trevington demanded a formal review of St. Mary’s by the local archdiocese. The results of this ethics investigation are not yet publicly known, and may never be revealed, although a diocese spokesman stated that changes in the hospital policies are to be expected.

The very decision to conduct such a moral audit displays a chilling new direction in Church practice. As a matter of doctrine, Catholic hospitals require employees to “respect and uphold the religious mission” of their institutions as “a condition for medical privileges and employment.” So, in theory, any physician endorsing abortion (or vasectomies, birth control, withdrawal of life support, etc.) while on the hospital premises should be relieved of his duties. As a matter of Catholic doctrine, Trevington and his anti-abortion brethren appear to have the better half of the theological argument, at least when it comes to consistency and the letter of the law. At the same time, allowing Church dogma to dictate the medical practices of physicians clearly violates the most basic tenets of healthcare ethics. Dr. Smith had a duty to offer advice to his patient based upon his best independent professional judgment–which he apparently did. The Hobson’s choice that he faced–either to follow the Catholic “law” enshrined as policy or to adhere to medical obligation–was unreasonable and unacceptable.

Both of these events expose the dark and unspoken (although widely understood) secret that enables Catholic hospitals to practice first-class medicine: Official Church policy on matters such as contraception and end-of-life care, like much Catholic doctrine more generally, is largely honored only in the breach. I have known many excellent physicians over the years, both religious and secular, who work at Church-run hospitals. All of them advise women taking medications that cause birth defects to use contraception and tell HIV-infected patients to use condoms. Many offer direct counseling on abortion, certainly when fetal prognosis is grim. I cannot imagine any of these gifted doctors would force-feed an unwilling cancer patient in violation of an advance directive or a health care proxy’s wishes. Much like the absurd loyalty oath that New York’s college professors–myself included–take to uphold the state’s constitution, any pledge to support Catholic doctrine on medical matters is broadly viewed as a formality to be agreed to and then summarily ignored. Historically, the Church has looked the other way. Now, by challenging this longstanding system of benign neglect, bishops and grass roots zealots may believe they will achieve ideological purity. What they are actually doing is jeopardizing both the welfare of Catholic hospitals and the public health.

Some concrete thinkers may argue that since Catholic hospitals are “private” institutions, the Vatican can impose any rules that it wants. The claim belies the inherently public nature of the American hospital system. Catholic hospitals–like virtually all other hospitals in the Unites States–are only able to function as a result of a swath of government handouts and subsidies. Medicare and Medicaid pay the bills of almost half their patients. Federal funding supports the salaries of their medical residents. NIH Grants sponsor their research and clinical care. Many of the hospital buildings themselves were erected will federal construction dollars providing by the Hill-Burton Act of 1946. Private businesses may have a claim to considerable leeway in formulating their own rules and policies–although even “mom & pop” stores are reasonably prevented from excluding African-American customers and are often required to accommodate disabled shoppers. In theological matters, the Pope is certainly free to issue any decree he likes and those who wish to follow his dictates are entitled to do so. In contrast, Catholic hospitals function as public entities that serve people of all faiths and traditions. A patient in a medical emergency is taken by ambulance to the nearest hospital, not the nearest hospital that shares his social values. A system that operated otherwise would lead to logistical chaos and increased mortality. Once one accepts the premise that Catholic hospitals are public institutions, they have a moral obligation to comply with generally accepted standards of patient care and professional ethics. Today’s hospitals are far more Caesar’s than they are God’s.

One of the greatest triumphs of modern health care in the United States is the rise of nonsectarian service. In an earlier era in New York City, for example, Jews sought care at Mount Sinai while Protestants preferred Presbyterian Hospital and Catholics chose St. Vincent’s. Now, most patients–and all wise ones–choose their health care providers for clinical skills and personal attributes, not religious labels. As a result, the majority of patients at Catholic hospitals are not Catholic. To impose orthodox Catholic doctrine on these non-Catholic individuals at the most vulnerable moments of their lives would be the most significant Church intervention in the lives of non-adherents since the Inquisition. Doing so would also threaten the ability of physicians to practice at Catholic hospitals without violating their professional codes of ethics. In light of these developments, any patient currently receiving care in a Catholic-run hospital should immediately clarify with her doctor whether this physician will follow the patient’s own end-of-life wishes regarding so-called heroic measures if they come into conflict with Directive 58.

The Catholic Church has every right to announce and publicize its views on certain medical interventions and to declare that Catholics who engage in certain conduct are violating the rules of the Church. It’s the Pope’s club. He can make the by-laws. He does not have any business imposing such rules on third parties who do not wish to follow them. It will be a sorry day if American patients seeking the best medical care are forced to avoid Catholic hospitals for fear of having their living wills ignored or their doctors’ counsel dictated from Rome. The Church would be wise to focus its energies on theology and to leave the practice of medicine to the professionals.

Read this post at its original site at The Huffington Post.

Bishops vs. Patients Rights

I have written how recent changes to Ethical and Religious Directive (ERD) Number 58 compel Catholic hospitals and nursing homes to either disregard your end-of-life choices or violate the letter of the Directive.

The powerful Catholic Health Association says Compassion & Choices and I are exaggerating; the change is insignificant.

To bolster its claim of “no change” CHA points to another Directive, Number 59, that the free and informed judgment of patients should always be respected. What CHA fails to note is the condition at the end of that sentence, “unless contrary to Catholic moral teaching.”

But, one might ask, what exactly does that mean? How broad is that caveat? Who decides – doctor, bioethicist, Bishop? What sort of request, expressed in a living will, may not be honored in a Catholic hospital or nursing home, even before the recent change in ERD 58?

Picture this situation:

My mom received an Alzheimer’s diagnosis when she was just 59, and we both had a pretty good idea what lay ahead. Not far from my home northwest of Chicago is a fine long-term care facility with a wing dedicated to patients with Alzheimer’s.

My mom has been there ten years. She has been well cared for, getting the day-to-day support I couldn’t give on my own. Even as I have watched and grieved her drifting away, I am grateful for the time we have had together over those ten years.

Then she lost her appetite and her ability to feed herself. It’s hard for her even to swallow. Two days ago her care coordinator asked me about a feeding tube. I knew what Mom would choose. My family was supportive. I told the care coordinator Mom wouldn’t want a feeding tube in this condition and I took another little step down that slow path of grief.

But the care coordinator wants me to meet with their chaplain before making a decision. She says my mom is not actively dying and there’s no indication that she wouldn’t tolerate a feeding tube. Will I have to find another facility and arrange a transfer to honor what I know would be my mother’s wishes?

The recent change to the ERD sets out some narrow exceptions when artificial nutrition and hydration (ANH) is not obligatory: if a patient is actively dying; if the tube causes serious side effects like infection; if the patient’s body cannot assimilate the food and water.

But, “My loved one doesn’t want to eat and can’t swallow. I don’t want to force them to stay alive.”— will that justify an exception?
Here’s another scenario:

The phone rings. It’s the assisted living facility’s care supervisor; my father collapsed just after dinner. “The EMTs are taking him to Mercy Hospital.” An hour later I am driving down Baltimore Pike into southwest Philadelphia.

I find my father in the ICU. Hooked up to all the tubes and equipment he looks so much older than a week ago. Over the next day and a half of tests and waiting – learning it’s a stroke – he doesn’t wake or stir. I’m sitting with him mid-morning when the neurologist arrives. He goes over results and treatments they’ve tried. “It’s unlikely that your father will regain consciousness, and if he did, very unlikely that he would return to normal mental function. We need to think about next steps.”

My father designated me his health care proxy for a moment like this. His advance directive is clear, and he’s been blunt in conversation. “Look, I’m eighty-three years old, and I’ve had all the breaks. If something happens, I don’t want to sit in a chair and drool for years.”

I make an appointment to see the social worker in her office, where we’re joined by a priest. I tell them we’re ready to remove life support. She turns to the priest. He says, “Mercy Hospital is committed to honoring advance directives for health care decisions as long as they do not contradict Catholic principles,” The priest has a copy of my father’s advance directive and reads from it. “If I am ever consistently and permanently unable to communicate, swallow food and water safely, care for myself and recognize my family and other people, and it is very unlikely that my condition will substantially improve, I would want to die rather than have life-sustaining treatments.”

The priest looks up. “Your father’s living will suggests that in his unconscious state his life is no longer worth living. Under these conditions, removing life support would be an act of euthanasia by omission.”

Catholic bioethical thought has evolved over centuries. The ERDs that govern care in Catholic hospitals and nursing homes are extremely nuanced. Your directions about life support may or may not be honored in a Catholic institution. Your concern about the burdens of medical interventions might justify forgoing life-sustaining medical treatment. But a wish to be allowed to die under certain circumstances might not.

Have you talked with your family about end-of-life options? Good.

Is an advance directive in place? Excellent!

Will that directive be honored in a Catholic health care facility? We cannot know for sure.