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Directive says food and water must be give How Many Days After I Told My Ex Girlfriend n to patients in persistent vegetative state

Chicago Tribune
By Judith Graham, Tribune reporter
February 8, 2010

If ever Carol Gaetjens becomes unconscious with no hope of awakening, even if she could live for years in that state, she says she wants her loved ones to discontinue all forms of artificial life support.

But now there’s a catch for this churchgoing Catholic woman. U.S. bishops have decided that it is not permissible to remove a feeding tube from someone who is unconscious but not dying, except in a few circumstances.

Erica Laethem of Resurrection Health Care talks with resident physician Harjyot Sandhu during the rounds at Intensive Care Unit of the St. Marys of Nazareth Hospital in Chicago. (Tribune photo by Zbigniew Bzdak / January 28, 2010)
Erica Laethem of Resurrection Health Care talks with resident physician Harjyot Sandhu during the rounds at Intensive Care Unit of the St. Mary's of Nazareth Hospital in Chicago. (Tribune photo by Zbigniew Bzdak / January 28, 2010)

People in a persistent vegetative state, the bishops say, must be given food and water indefinitely by natural or artificial means as long as they are otherwise healthy. The new directive, which is more definitive than previous church teachings, also appears to apply broadly to any patient with a chronic illness who has lost the ability to eat or drink, including victims of strokes and people with advanced dementia.

Catholic medical institutions – including 46 hospitals and 49 nursing homes in Illinois – are bound to honor the bishops’ directive, issued late last year, as they do church teachings on abortion and birth control. Officials are weighing how to interpret the guideline in various circumstances.

What happens, for example, if a patient’s advance directive, which expresses that individual’s end-of-life wishes, conflicts with a Catholic medical center’s religious obligations?

Gaetjens, 65, said she did not know of the bishops’ position until recently and finds it difficult to accept.

“It seems very authoritarian,” said the Evanston resident. “I believe people’s autonomy to make decisions about their own health care should be respected.”

The guideline addresses the cases of people like Terri Schiavo, a Catholic woman who lived in a persistent vegetative state for 15 years, without consciousness of her surroundings. In a case that inspired a national uproar, Schiavo died five years ago, after her husband won a court battle to have her feeding tube removed, over the objections of her parents.

The directive’s goal is to respect human life, but some bioethicists are skeptical.

“I think many (people) will have difficulty understanding how prolonging the life of someone in a persistent or permanent vegetative state respects the patient’s dignity,” said Dr. Joel Frader, head of academic pediatrics at Children’s Memorial Hospital in Chicago and professor of medical humanities at Northwestern University’s Feinberg School of Medicine.

Gaetjens, a hospice volunteer and instructor at Northwestern University, has thought long and hard about illness and the meaning of life after struggling with multiple sclerosis for 40 years.

She said she has told her sister and a close friend that she does not want “heroic measures” undertaken on her behalf at the end of life. But she acknowledged that she has not studied Catholic teachings on the subject or thought through all the implications of her position.

“My pleasure is in being part of the human race,” she said. “If that’s gone, if I can’t interact with other people, even if they could give me nutrition and keep me hydrated, I’m not interested in being preserved.”

Some experts are advising that a similar stance is no longer tenable for devout Catholics. Church members should steer away from advance directives that make blanket statements such as “I don’t want any tubes or lifesaving measures,” said the Rev. Tadeusz Pacholczyk, director of education for the National Catholic Bioethics Center in Philadelphia.

The church’s view is that giving food and water to a person through a feeding tube is not a medical intervention but basic care, akin to keeping the patient clean and turning him to prevent bedsores, Pacholczyk said.

Pope John Paul II articulated the principle in a 2004 speech, and the Congregation for the Doctrine of the Faith, an arm of the Vatican, expanded on it in a 2007 statement. The new guideline incorporates those positions in Directive 58 of the U.S. bishops’ Ethical and Religious Directives for Catholic Health Care Services.

There are several important exceptions. For one, if a person is actively dying of an underlying medical condition, such as advanced diabetes or cancer, inserting a feeding tube is not required.

“When a patient is drawing close to death from an underlying progressive and fatal condition, sometimes measures that provide artificial nutrition and hydration become excessively burdensome,” said Erica Laethem, a director of clinical ethics at Resurrection Health Care, Chicago’s largest Catholic health care system.

Some ethicists are interpreting that exception strictly. The Rev. William Grogan, a key health care adviser to Cardinal Francis George and an ethicist at Provena Health, based in Mokena, said death must be expected in no more than two weeks – about the time it would take someone deprived of food and water to die.

But Joseph Piccione, senior vice president of mission and ethics at OSF Health Care in Peoria, said that if a patient knows she is dying of, say, incurable metastasized ovarian cancer but is several months from death, she can decline to have a feeding tube inserted if she anticipates significant physical or emotional distress from doing so.

A second exception has to do with bodily discomfort. If infection develops repeatedly at the site of the feeding tube, for instance, artificial nutrition and hydration can be refused or discontinued, Catholic ethicists agree.

A third exception is allowed when inserting or maintaining a feeding tube becomes “excessively burdensome” for a patient. That would apply, for instance, if a person regurgitates the food and develops pneumonia when it enters the lungs, Grogan said.

Under traditional Catholic teachings, patients may refuse medical interventions when anticipated burdens outweigh potential benefits.

“Decisions are made case by case,” and that will continue, said Ron Hamel, senior director of ethics at the Catholic Health Association of the United States.

Of particular concern is whether Catholic medical centers will honor an advance directive stating broadly that a person does not want a feeding tube inserted.

Compassion & Choices, a group that supports the right of dying people to end their lives, suggested the potential for conflict is significant.

“Now, (Catholic) hospitals and nursing homes have no choice but to enforce Catholic doctrine universally over patient wishes,” the group’s president, Barbara Coombs Lee, wrote on her blog.

But most ethicists said they do not see a significant problem. Disagreements, they say, usually can be resolved by discussing people’s end-of-life concerns, such as fear of being abandoned, fear of living in pain or fear of becoming entirely dependent on others.

It is rare for people to be very specific about their wishes.

“I have never seen an advance directive that says, ‘If I am in a persistent vegetative state, I ask that you withdraw food and water,’” Laethem said.

“We will be very attentive to patients’ advance-care planning,” Piccione said.

That offers some solace to people like Jim Lindholm, 69, who is struggling with a recurrence of non- Hodgkin’s lymphoma and attends St. Nicholas Catholic Church in Evanston.

“If there is no hope of recovery for me, if I’ve lost my active mental life, I don’t see any reason to keep my body alive,” he said. “I would prefer to die a peaceful death.”

Lindholm speaks from deep personal experience. A dozen years ago, his father suffered a stroke and lost the ability to feed himself and speak for himself. Attempts to feed him by hand did not succeed. His advance directive was clear: no extraordinary measures.

The doctors offered a feeding tube; Lindholm’s mother said, “My husband wouldn’t want that,” so Lindholm’s dad died of lack of food and water.

Lindholm still struggles with it. Did his father really want to starve to death? If his mother had agreed to the feeding tube, how long might he have lived?

“We owe it to those who survive us to make it very, very clear what we mean by ‘do not resuscitate,’” Lindholm said.

Although medical institutions are legally bound to respect patients’ advance directives, exceptions exist for providers who object by reason of conscience or religious belief, said Charles Sabatino, head of the American Bar Association’s Commission on Law and Aging.

The bishops’ guidelines specify that “advance directives are to be followed, so long as they do not contradict Catholic teachings,” said John Haas, president of the National Catholic Bioethics Center. How those teachings will be interpreted has yet to be resolved.

jegraham@tribune.com

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Questions and answers about Directive 58

Q. What did the bishops actually say?

A. This quote from Directive 58 gives the gist: “In principle, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally. This obligation extends to patients in chronic and presumably irreversible conditions (e.g., the ‘persistent vegetative state’) who can reasonably be expected to live indefinitely if given such care. Medically assisted nutrition and hydration become morally optional when they cannot reasonably be expected to prolong life or when they would be ‘excessively burdensome for the patient or (would) cause significant physical discomfort.’”

Q. Is this an entirely new position?

A. An earlier version of the directive, published in 2001, spoke of a “presumption” in favor of giving food and water to patients in a vegetative state; the new version speaks of an “obligation” to do so and appears to extend to patients with other chronic conditions. Precedent for the position comes from a 2004 statement from Pope John Paul II and a 2007 statement from an important advisory group at the Vatican.

Q. What inspired the change?

A. Church leaders oppose assisted suicide and euthanasia and wanted to affirm strongly that the lives of severely disabled people have value.

Q. Does it apply to Catholics only?

A. The guideline affects all patients who seek care at Catholic medical centers, regardless of their religion, said Stan Kedzior, director of mission integration at Alexian Brothers Health System.

Q. Who decides if a feeding tube is “excessively burdensome” and therefore not warranted?

A. That’s up to the patient, but it isn’t as simple as, “I don’t like it and I don’t want it.” There have to be discernible physical, emotional or financial hardships for the patient, according to Joseph Piccione of OSF Health Care. Those hardships must outweigh the potential benefits.

Q. Does this mean Catholics must pursue all medical interventions at the end of life?

A. “No. We mustn’t all die with tubes,” said John Haas of the National Catholic Bioethics Center. “The Catholic Church has never taken that position.” Church members may refuse interventions they deem excessively burdensome.

For instance, someone with advanced kidney failure is not obligated to pursue dialysis, said the Rev. William Grogan, a health care adviser to Cardinal Francis George. Someone who has lost the ability to breathe is not required to use a ventilator.

Read the story at its original site on the Chicago Tribune website.

Copyright © 2010, Chicago Tribune

Feedings Tubes For All — The Bishops Know What’s Best for You

The enforcement arm of the Catholic Church has ordered feeding tubes to be inserted in all comatose and vegetative patients in Catholic institutions and maintained indefinitely. Compassion & Choices has warned of the impa How To Get Your Your Ex Boyfriend Back ct this will have on your healthcare choices. I want to make clear the sources of the outrage I expressed in my last blog.

For years I have been well-acquainted with the Ethical and Religious Directives for Catholic Health Care Services (ERD’s). But the Bishops’ recent action prompted me to review the document again, and its arrogant presumption of moral superiority struck me anew.

I understand the history and spirit of sectarian health care, and I feel open and accepting of its role in America. In the 1970′s I practiced as a physician assistant in a Seventh Day Adventist healthcare system and I delivered both my children in its hospital. I truly appreciated the staff’s attitude of spiritual calling and the prayers they offered for my safety and my babies’. True, those awful soy patties from cans almost turned me away from vegetarianism for life. But it seemed to me the Adventists ranked service and humility ahead of doctrine and I never saw their religion dominate a conversation or a medical decision.

The ERD’s are different. They are all about dominance. Four aspects are especially chilling in their authoritarian pronouncement.

First, the Bishops explicitly target everyone, of every faith, with the “revealed truth” reflected in their ERD’s. The document specifically directs its mandates beyond hospital employees and Catholics, to every patient, resident or recipient of Catholic services. Everyone — Buddhist, Muslim, Jewish, Protestant or Unitarian — must obey.

Second, the Bishops may acknowledge a pluralistic society where various spiritual disciplines lead to different moral conclusions, but they do not hesitate to over-ride them. Your conscience and religious beliefs just don’t count because, according to the ERD’s, “…Catholic health care does not offend the rights of individual conscience by refusing to provide or permit medical procedures that are judged morally wrong by the teaching authority of the [Catholic] Church.“  Well, those who believe artificial maintenance of an insensate body degrades God’s gift of life might disagree. They might well think insertion of a feeding tube against their will does offend their right of conscience.

Third, doctrine always trumps individual decision-making. Dealing with advance directives, ERD’s specify that hospitals “will not honor an advance directive that is contrary to Catholic teaching.” So, too, “The free and informed health care decision of the person or the person’s surrogate is to be followed so long as it does not contradict Catholic principles.” They’ll honor your decision — but only if they agree with it.

Fourth, many find shocking the exaltation of suffering as “participation in the redemptive power of Christ’s passion“. And few non-Catholics find comfort in Directive #61. There we find that dying patients “experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering.”  Apparently the nurses are to deliver a theology lesson to patients dying in agony.

The ERD’s demonstrate that one purpose of Catholic health care is to coerce people of all faiths into following Catholic moral teachings. Employers facilitate the coercion when the only health plan they offer is Catholic. States facilitate the coercion when they approve hospital mergers rendering large geographic areas devoid of any but Catholic health care. Insurers facilitate the coercion when they fail to offer a broad choice of providers within their coverage.

My sense is the feeding tube mandate finally crossed a line, where states, employers, and insurers will no longer be willing to participate in the coercion. Personal dignity, individual right of conscience and autonomy in healthcare decisions are too important to continue to pretend Catholic healthcare is not prejudicial and discriminatory against non-Catholics.

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Your Final Wish Isn’t Always Your Doctor’s Command

Commentary by Ann Woolner
Bloomberg
December 9, 2009

You think you’ve done the legal paperwork to avoid becoming another Terri Schiavo, who was trapped in a hopeless vegetative state while her family argued over whether to keep her going.

You’ve specified ahead of time that you want nothing artificial to prolong your life, not even a forced-feeding tube, if doctors say you won’t recover from that state.

Don’t rest assured. If that time comes, the documents you labored over won’t count for much if you wind up in the wrong place.

More than 900 hospitals and health-care centers in the U.S. that treated 93 million patients last year are affiliated with the Catholic Church, whose American policy-making body won’t let your end-of-life wishes come true while you are in their care.

Last month the U.S. Conference of Catholic Bishops resolved what had been a debate among clerics and ethicists over the morality of artificially feeding or hydrating patients who are stuck in a vegetative state, possibly for years.

What had been a “presumption” in favor of tube feeding in 2001 became, in the revised policy, an “obligation.”

“This obligation extends to patients in chronic and presumably irreversible conditions (e.g., the ‘persistent vegetative state’) who can reasonably be expected to live indefinitely if given such care,” the bishops announced in the latest version of their Ethical and Religious Directives for Catholic Health Care Services.

If an incapacitated patient has a living will that instructs physicians, it “should always be respected and morally complied with, unless it is contrary to Catholic moral teaching,” the bishops said.

A Big ‘Unless’

 

That’s a big “unless.”

If family members insist that the patient’s directive be followed, they would have to move him to another facility, according to the Reverend Thomas Weinandy, executive director of the Conference of Bishops doctrine committee.

For thousands of Americans, a Catholic hospital is the only one they have, saysCompassion and Choices, a non-profit group that advocates for the terminally ill.

Federal and state laws encourage people to think ahead of time about what medical treatment they would want, and under what circumstances, if they became incapacitated. Hospitals that accept federal funds are required to bring up the subject, and that’s when they advise incoming patients of their policies.

You can spell out your wishes in an advance directive, and you can name a health-care proxy to speak for you on such matters.

Criminal Battery

 

“Where you actually have a medical directive, people are constitutionally entitled to have their wishes given effect,” says Ray Madoff, a law professor at Boston College focusing on end-of-life issues.

The U.S. Supreme Court said so in the Nancy Cruzan case in 1990. But, Madoff asks, who’s going to enforce that right?

Under older case law than Cruzan, if you are given a treatment you specifically declined, it is considered criminal battery under the law. Whether that applies to tubing for food and water, which some see as too basic to human existence to be considered medical treatment, isn’t as clear.

In New York, state law requires an extra level of evidence that the patient didn’t want a feeding tube for it to be denied. An advance directive would accomplish that, and so would a health-care proxy with knowledge of the patient’s wishes.

But I digress.

Larger Issue

 

The conflict between patient and medical personnel speaks to a larger health-care issue that reaches beyond Catholic institutions.

The notion is growing that the institutional or individual conscience of a health professional trumps a patient’s wishes when they conflict, or at least makes them more difficult to carry out.

Health professionals have been winning ever-stronger language in state and federal laws that forbid discrimination against them if their moral or religious beliefs prevent them from assisting or performing abortion or prescribing birth control. You will find some version of it in health-care bills Congress is considering.

And while in most cases of conflict arrangements are made to transfer patients to health-care providers and professionals who will comply with their wishes, that isn’t always possible.

Critical Decisions

 

This tugs at a sacred tenet of American health care: that an informed and competent patient should be allowed to make critical decisions over his own body, even in advance.

Increasingly, the patient’s moral and religious convictions are taking a back seat to the beliefs of people charged with caring for their health.

So it was with the Bishops Conference, which ditched its more ambiguous stance to adopt principles taught by Pope John Paul II.

Catholic hospitals can still follow patient directives that refuse other sorts of medical treatments. The more difficult question was whether food and water are medical treatments and therefore morally optional. And what if the patient could exist for years in a vegetative state?

Or was it something so essential to a person’s humanity that it must be given to affirm the value of human life, indefinitely? Would it be euthanasia to refrain from tubing?

It would, the bishops announced.

“We believe we are upholding the dignity and value of every human life,” Weinandy said in a telephone interview.

And yet, there are others who believe their dignity requires health-care providers to abide by their wishes to keep feeding tubes out of their bodies if they have no hope of ever resuming consciousness.

At a time when the country is in desperate need to reduce health-care costs, surely we could start by agreeing that it’s a good idea for patients not to be given treatment they have specifically refused.

Council of Catholic Bishops Veto Millions of Advance Directives

Catholic Health Care Facilities to Ignore Advance Directives,
Patients will be Force-Fed Against their Will

The United States Council of Catholic Bishops has ordered Catholic healthcare institutions to veto the Advance Directive wishes of millions of Americans on the refusal of tube feeding if they were to become permanently unconscious. Compassion & Choices, the nation’s oldest and largest nonprofit working for end-of-life care and choice, sharply criticized the action as an imposition of dogma over the desires and dignity of patients and families. Polls show that at least three-quarters of Americans report they would not want to be kept alive artificially if they were in a persistent vegetative state. Most people who fill out advance directives indicate they do not want artificial feeding if they become permanently unconscious.

But the revised “Ethical and Religious Directives for Catholic Health Care Services” (ERD) decrees those wishes will not be honored at the 565 Catholic hospitals across the nation, by Catholic HMO’s and health care plans and by millions of nurses, doctors and hospital workers who must follow the bishops’ lead.

“The impact is enormous, for Catholics and non-Catholics alike,” said Barbara Coombs Lee, president of Compassion & Choices. “The USCCB order runs counter to written instructions in hundreds of thousands of Advance Directives and the clear wishes of many individuals with no written document. The primary consideration in healthcare decisions should always be the individual’s values, beliefs and desires, not fixed doctrine of any one religion. We respect the beliefs of all Catholics, but we do not respect an attempt by Catholic Bishops to override the health care decisions of a majority of Americans. This Directive could bring an equivalent of Terri Schiavo’s tragedy to 300,000 families each year.”

Catholic healthcare institutions must abide by a set of rules called “Ethical and Religious Directives, written by the US Bishops. Meeting in Baltimore, the bishops yesterday overwhelmingly approved a revision to the directives with a specific reference to the “persistent vegetative state” that afflicted Terri Schiavo. Removing all flexibility to respect the wishes of a patient or family, the revised directive creates “an obligation to provide patients . . . medically assisted nutrition and hydration” in all instances except when a patient is actively dying. Thus, Catholic hospitals and nursing homes are now obliged to insert and maintain feeding tubes in all patients with severe advanced dementia, permanent unconsciousness and persistent vegetative state.

An estimated 10,000 to 25,000 U.S. adults are in persistent vegetative states (PVS), according to the Multi-society Task Force on the Persistent Vegetative State. Every year, 300,000 feeding tubes are inserted, usually in patients with PVS, advanced Alzheimer’s disease, and permanent unconsciousness from other causes, such as strokes. Decisions must be made to withhold them, withdraw them, or retain them indefinitely. The prior version of the ERD suggested a “presumption in favor” of feeding tubes, balanced against the burdens to the patient. That balancing allowed doctors to give weight to a patient’s previously stated wishes and reports from family of what the patient would want. The new guidelines allow no consideration of the burden to the patient or the testimony of the family.

“When a healthcare institution adopts a conscience provision that effectively invalidates the advance directives of millions of Americans, it calls into question whether federal dollars are funding religious discrimination against Americans who do not share the Catholic view of end-of-life decisions,” said Barbara Coombs Lee, President of Compassion & Choices.

The revision to the ERD reads, “As a general rule, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally. This obligation extends to patients in chronic conditions (e.g., the ‘persistent vegetative state’) who can reasonably be expected to live indefinitely if given such care.”

Compassion & Choices is a nonprofit organization working to improve care and expand choice at the end of life. We support, educate and advocate.