End-of-Life Choice, Palliative Care and Counseling

Posts TaggedChicago

OFFBEAT: Legendary advice columnist ‘Dear Abby’ speaking at Chicago conference

By Philip Potempa
NWI.com
June 25, 2012

Billed as “the most widely syndicated newspaper columnist in the world,” the Dear Abby daily advice column feature appears in 1,400 newspapers worldwide, boasting a daily readership of more than 110 million people.

She also anchors the advice page in a number of our sister newspapers as part our parent Lee Enterprises media chain, from the St. Louis Post-Dispatch to The Citizen in Auburn, N.Y.

Written under the Abigail Van Buren pen name by Jeanne Phillips, the advice column was founded in 1956 by her mother, Pauline “Popo” Phillips, who will celebrate her 94th birthday on July 4. (Popo’s twin sister Eppie Lederer aka the late great Ann Landers of Chicago fame, died of cancer at age 83 in 2002.)

Since Jeanne and the Dear Abby column are based in Los Angeles, it’s not often that we get her for a Chicago visit.

But this week, she’s the keynote speaker for a great conference event open to the public.

Compassion & Choices is the leading group working hard building bridges to improve care and expand choice at the end of life through support, education and advocacy.

The 2012 conference is in Chicago starting Thursday and continuing through Saturday. Held at the Hyatt Regency O’Hare, 9300 Bryn Mawr Ave. in Rosemont, Ill., the conference theme is “Heights of Compassion, Bridges to Choice” and offers a remarkable opportunity to connect with other end-of-life choice supporters, caregivers and activists.

Jeanne and her Dear Abby wit and wisdom opens the conference at 3 p.m. Thursday with her talk “The Common Sense Approach to End-Of-Life Choices” discussing the question: “Will they know what I want if I can’t speak for myself?”

The conference includes a wide choice of speakers, workshops and seminars during the three days, for participants to learn about advance directives, legal end-of-life options, palliative care and aid in dying. Social workers and others can receive training credit by attending.

Compassion & Choices President Barbara Coombs Lee said her organization is the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life.

She said this event is the largest gathering in the nation to connect end-of-life choice supporters, caregivers and activists, along with physicians from across the nation addressing end-of-life issues, as well as family members who will offer personal perspectives on supporting a loved one with a terminal illness. On Saturday, Coombs Lee will conclude the conference with an address on the state of the U.S. end-of-life choice movement.

Other keynote speakers for this conference include actress Megan Cole, news commentator Betty Rollin and palliative care counselor Stephen Jenkinson.

There are both daily rates available to attend to hear speakers, as well as overnight packages available and multiple day attendance options. FYI: compassionandchoices.org or (800) 247-7421.

How Many Days After I Told My Ex Girlfriend

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.

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