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

Archive for January, 2010

How the opinion of one pope became the rule for all Americans

The US Conference of Catholic Bishops (USCCB), as I have written, recently mandated tube-feeding for all permanently unconscious patients in Catholic healthcare institutions. This contradicts the desires of the vast majority of Americans. The Bishops are indifferent and have decided to act as agents of the Vatican, even as they exercise enormous control over healthcare choices in America. How did they arrive at this position of arrogance?

The story of how one pope’s opinion came to control Catholic healthcare throughout America is both fascinating and scary. It is the story of debate squashed, and profound authoritarianism prevailing.  The story ends with absolute obedience to the dictates of Rome by Catholic medical providers who vow to impose the pope’s dictates on Catholic and non-Catholic patients alike, even though they personally disagree with the edict.

For decades after feeding tubes became commonplace, the ethics of Catholic healthcare institutions maintained a generous and merciful position toward their use. Their position rested on a principle that one must employ ordinary means to prolong life but may forego extraordinary means in the same circumstance.

Professor of religion and social ethics Thomas Shannon wrote

. . . the common Catholic tradition has sought to determine what benefits an intervention would provide and whether the burdens of intervention are proportionate or disproportionate to the expected benefits.

In this view, the use of a feeding tube is evaluated considering a patient’s individual views on the quality of life, burdensome medical treatment and what constitutes a faithful and devout relationship with God. Many Catholics were comfortable with the common tradition, and many Catholic ethicists comfortable allowing families to give weight to their loved one’s aversion to living in a state of suspended animation for years or decades.

Extreme pro-life Catholics, however, argued that food and water, even artificially administered, are ordinary and basic, and sustaining life itself of any quality is fundamentally beneficial. Pope John Paul II fostered the ascendancy of the pro-life movement within the Church.

Prompted  by The Terri Schiavo case, the Pope sided with the picketers outside Ms. Schiavo’s hospice room, declaring that tube-feeding patients in a permanent vegetative state “always represents a natural means of preserving life, not a medical act” and should “be considered, in principle, ordinary and proportionate.”

Did the pope’s guidelines allow for the patient’s view of benefits and burdens? Some ethicists still thought yes, but a September, 2007 response from the Congregation for the Doctrine of the Faith (CDF, formerly called the Office of the Inquisition), said:

No. A patient in a ‘permanent vegetative state’ is a person with fundamental human dignity and must, therefore, receive ordinary and proportionate care which includes, in principle, the administration of water and food even by artificial means.

Even then some Catholic bioethicists like John Hardt looked for personal choice in the CDF’s use of the phrase, “in principle.” But in November, the Bishops closed the door: feeding tubes are obligatory.

Why did the bishops make a nationwide rule at odds with the beliefs of many devout Catholics, with a tradition of weighing benefits and burdens on an individual basis, and with established medical practice at most Catholic institutions? My own opinion is the Vatican and the Bishops turned to serious enforcement to impose their dogma precisely because Catholic patients and practitioners were not following their extreme pro-life doctrine in private medical decisions.

My friend Dan Maguire, Professor of Moral Theology at Marquette University, has said,

In Catholicism there are three sources of truth, (or three “magisteria”): the hierarchy, the theologians, and the wisdom and experience of the laity (called in Latin sensus fidelium).

Like a three-legged stool, multiple sources of wisdom have maintained the stability of Catholic wisdom. In the feeding tube decision, I believe the honest observer would see a one-legged stool making all the decisions, and a clear victory for the hardliners.

The moderates have lost the debate, and so have we. The Vatican has cut off the two offending legs of the stool and nullified ethical consideration of individual weighing of burdens and benefits. Cardinal Rigali, chair of the Committee on Pro-Life Activities and Bishop Lori, chair of the USCCB Committee on Doctrine, in stern tones, announced as much:

Even if one judges that such a condition, when prolonged, makes survival itself a burden, such a judgment does not justify removing food and water …

Codification of the Vatican’s ruling in the Ethical and Religious Directives ties the hands of Catholic patients and families, faithful physicians, nurses and caregivers and impacts everyone under care in a Catholic healthcare institution. We must increase public awareness of the threats to their rights in Catholic institutions and take steps to stop the Vatican from unilaterally ignoring legally executed advance directives. There can be no further dissent from within the Church. Daniel Sulmasy, a Franciscan Brother, internist and ethicist at St. Vincent’s hospital in New York, sympathizes with people of deep faith who do not wish to offend God, but nevertheless are horrified at the prospect of years, or even decades, lingering in a state of mere existence, without the ability to think, feel, pray, or relate to loved ones.  Fr. Sulmasy said the restrictive rule would be difficult to follow, though as “an obedient friar and physician” he would do so.

Consumers of Catholic healthcare, don’t say you weren’t warned.

Death of Ruth Proskauer Smith Honors the Life She Led

Ruth Proskauer Smith, a friend and an activist for individual autonomy, died last night, closing her life in the manner she had wished for, planned for and devoted her life to securing as her right.

When I met Ruth in 1996, she was already an icon in the movement for freedom of choice at the end-of-life. She had a long list of accomplishments behind her. But she was not happy. At that time, only Oregon had succeeded in affirmatively legalizing aid in dying, and its Death With Dignity law languished in legal limbo. Ruth was determined to make a difference and joined the work of Compassion & Choices, serving as a dedicated ambassador of end-of-life choice.

Among the things I treasure from my 15-year friendship with Ruth is having had the opportunity to see her growing pleasure with advances we’ve achieved in end-of-life choice. Together Ruth and I witnessed the triumph of justice over repeated legal challenges to Oregon’s law, the passage and implementation of Death With Dignity in Washington, the passage in California of the Terminally Ill Patients’ Right to Know End-of-Life Options Act and a ruling by the Montana Supreme Court to recognize and affirm physician aid in dying.

Ruth was a generous, fierce and dedicated supporter of our movement, as she was for reproductive choice. Her passion for human liberty was not limited to one issue, but spanned from the cradle to the grave. Gloria Steinem summed that up beautifully in a letter she wrote when Compassion & Choices honored Ruth on her 100th birthday.

When I was in South Africa a few years ago, I went to see a wise woman known as the Queen of the Lovedu, a tribal group of about 300,000 that had settled in a remote rural area after a long migratory past.

She was one of the most respected tribal leaders in the country, partly because she, unlike many, had not been put in place by the apartheid government or even by heredity. She was one of a long line of wise leaders who had been chosen communally as a young woman, and then trained for many years by her predecessor until she, too, was ready to become a source of guidance and continuity.

When I came to the remote area and her village, I noticed that all the earthen, thatched-roof structures were as round and smooth as sculptures. So were the central area and the places where livestock were kept.

I entered into a smaller round structure at a little distance from the rest, and was welcomed by a calm woman who seemed to be in her late fifties. She was seated in a large armchair facing me and the two translators who brought us together across three languages.

I learned that she had two paramount duties: keeping the peace and making rain. She was about to begin instructing the young woman who would eventually succeed her-a long course of learning stories that contained their history and customs, ways of governance and healing.

In response to my questions, she said she had heard there was violence against women in other places, but she had not personally witnessed it here. Traditionally, women had understood how to control their own fertility with herbs and abortifacients-how to have children well spaced and no more than they wished-but this knowledge was called sinful by some Europeans and by the church.

Among other rights of the past had been the right to decide when to die. For example, after her duty of transferring her knowledge to the next wise woman was complete, it was up to her to decide when she was ready to leave this life.

At least it had been-until scandalized missionaries punished and put an end to the practice. Only a male god could decide life and death.

I finally realized the obvious: those who take away the power to decide birth also take away the power to decide death. The first one is unique to women; the second is the right of us all. In our country, is it not odd that those who support capital punishment also tend to oppose abortion and birth control. The question is not life or death but who has power over life and death.

Ruth, you knew this long ago-and you set out to empower us all. Your work also restores balance between women and men, between people and nature.

I thank you for being the wise woman of Manhattan.

- Gloria Steinem
from Compassion & Choices Magazine, Spring 2008

Ruth manifested deeply held personal beliefs throughout her life, and she wanted her death to be the same. She gave her family a detailed, written plan of her wishes should she become incapacitated, including guidance on whether and when to call an ambulance and the disposition of her body after death. She discussed her plan with her family and doctors, obtaining their assurance that her wishes were known, and that they would be honored. Her proactive approach gave her children the security of knowing, without question, what was right for Ruth when the time came.

Last night, Ruth died peacefully, as and when she had hoped. Family members at her side remained in touch with a Compassion & Choices counselor throughout Ruth’s dying process. Ruth spent the last chapter of life in her home, in the company of her children, her grandchildren and her great grandchildren.

Ruth’s careful plans and clear communication made it possible to experience a death that honored the life she led. Her courage, advocacy and unfailing support for human liberty will enable millions who follow her to achieve the life, and the death, they choose.

The *D* Word

In most published remembrances, loved ones dance around death — but does that really help anyone?
By Carlos Alcalá
The Sacramento Bee

Death is hard to find in death notices.

This is the time of year – January and February – when death rates are generally highest, according to the National Vital Statistics System.
The Bee and other newspapers tend to run more paid death notices at this time of year, too.

If you read those notices carefully, however, you’ll find many people in them didn’t exactly die.

Most of them “passed away.”

Some “entered into rest.” Others “left the world in God’s hands.”

In a few cases, there isn’t even a verb, only a date and location to indicate the death.

“Death is hard to deal with,” said University of California, Berkeley, linguist Geoffrey Nunberg, explaining why people avoid the four-letter word that starts with ‘d’ – died.

“This is one reality that’s hard to face head-on,” he said. “It happens in the Bible; it happened in Homer.”

Take Genesis: “Abraham gave up the ghost … and was gathered unto his people.”

It happens in the newspaper, too. A lot.

Bill Gaylord is a regular reader of The Bee’s “Remembrances.” That’s because of his age, which he described as “beyond four score.”

Gaylord joked, as George Burns once did, that he scans the notices and, if he isn’t in there, he shaves.

That’s how he noticed the variety of phrases.

“Over the years, I have realized that a fair number of people composing death notices for their loved ones avoid the simple statements of fact,” he said.

He started collecting phrases in The Bee’s paid death notices. They are submitted by survivors or funeral homes, as opposed to news obituaries, which are written by reporters.

In a few short months, Gaylord came up with more than 150 different ways to say a loved one died, fewer than 10 of which used the word “died.”

Among his more elaborate finds:

“At peace and sailing into the sunset.”

“Arrived on his last flight – as he called this final journey.”

“Left us to become an angel in heaven.”

“Slipped away quietly.”

And … “Went on to be with her well-known master, Jesus, where her husband of 57 years was waiting for her arrival. As he took her by the hand and led her up those golden stairs and through those pearly gates he might have said, ‘What took you so long?’ ”

The newspaper representatives who take the ads say they generally use “passed away.” The fancier phrases come from family members, not funeral homes.

When Alvin Joseph Broussard died from cancer in May, his family chose to say he “moved further north to live with his Heavenly father.”

“We believe he is alive and well, just different,” said his son, Joel Broussard.
By “north,” they meant heaven, he said.

Broussard’s family also said he was “fully restored.”

They believe, Joel Broussard said, that death restores the person to his perfect self, not the body that had been damaged by time or disease.

This is not an approach taught in the funeral services program at American River College, according to coordinator Jeffrey W. Stephenson.
“People really need to hear the words ‘dead’ and ‘death,’ ” he said, explaining that it’s a needed part of the mourning process.

Students in classes on the psychology of death and dying hear that, and it’s also conveyed in Funeral Directing 1, during which instructors discuss death notices, Stephenson said.

He prefers to use “died” when preparing an obituary but will change it at the family’s request.

Bea Toney Bailey also prefers a more direct approach to death, which she discusses on “Bea on Bereavement,” her local cable show sponsored by the Interfaith Service Bureau, at 9 p.m. Mondays on Comcast and SureWest.

“We’re a very young culture, and we’re very youth-oriented,” Bailey said.

Death makes us uncomfortable. “If we talk about death,” she said, “we might die.”

So people hedge.

“They say anything except, ‘Hey, they died.’ ”

Beyond death notices, people have developed a lot of slang for death – “kicked the bucket,” “popped their clogs,” “bit the dust.”

It isn’t just death, though. Other unpleasant and pleasant bodily functions – sex, aging, vomiting, defecation – also generate lots of euphemisms, Nunberg said.

Though she is a Christian, the daughter of a minister, Bailey doesn’t think those circumlocutions – roundabout ways of avoiding the point – are helpful to those who are grieving.

It means they are avoiding the reality, she said, but it also doesn’t help anyone to say, “Snap out of it! He’s gone!”

That only serves to alleviate the discomfort of the person who says it, not the mourner, Bailey said.

She also thinks people should prepare their obituaries ahead of time – as a favor to their families.

“Mine’s already done,” she said.

Although she says she favors the direct approach, what she’s written is not blunt.

It opens with no equivocation: “If you’re reading this document, it means I’m no longer with you.”

It continues, however, with one of those indirect phrases: “I’ve gone on to be with the Lord.”

Avoiding the ‘D’ word

People use many phrases to express death in death notices. Here are a few more examples collected by Bill Gaylord:
• Absent from the body – present with the Lord
• He was called home.

• As God swept His hand across the earth, He took his angel home.

• Fell asleep in the Lord
• Crossed over

• His spirit soars off to a new adventure.

• Joined his wife

• Left us suddenly

• Passed over to his reward

• Returned home

• Went to sleep peacefully

• Budded on earth, blossomed in heaven

• Taken away from us

Those looking for more information on death, dying and bereavement may want to look at Bea Bailey’s Web site, farewellmyfriend.net.

Elizabeth Kubler-Ross’ 1969 book “On Death and Dying” is still considered a classic in the field, and most bookstores will have a section of titles on mortality issues.

Kathryn Tucker in The Journal of Legal Medicine

Compassion & Choices Legal Director Kathryn Tucker’s latest piece in The Journal of Legal Medicine is now available! “The Campaign to Deny Terminally Ill Patients Information and Choices at the End Of Life” takes a hard look at emerging trends showing anti-choice organizations moving more deeply into activism, policy promotion, and politics.

You can read Kathryn’s excellent article here. (PDF)

Media Shine Light on New Mandate from Bishops

We have been spreading the word since the US Council of Catholic Bishops (USCCB) adopted new rules in November, obligating feeding tubes for permanently unconscious patients in Catholic healthcare facilities. David Dayen at firedoglake and Ann Neumann at otherspoon have reported the story. Now traditional media sources are picking up the story.

On December 20th, Charles Stanley of Atlanta’s Sunday Paper reported on the new directive, its potential conflict with patients’ stated wishes, and the potential legal conflicts.

In yesterday’s San Francisco Chronicle, Bob Egelko reports on the new mandate’s impact on Bay Area Catholic care facilities and the families who could face unexpected challenges in making decisions about care for a loved one.

The directive plunges the bishops into another health care controversy, on the heels of their lobbying for tight restrictions on abortion coverage in health legislation pending in Congress.

Catholic hospital officials say the November decree isn’t rigid and leaves room for accommodating patients’ wishes. But the bishops’ language appears to conflict with a hospital’s legal duty to follow a patient’s instructions to withdraw life support, as expressed in an advance written directive or by a close relative or friend who knows the patient’s intentions.

Courts have ordered hospitals to disconnect feeding tubes when an unconscious patient’s wishes were clearly established. The best-known case involved Terri Schiavo, the Florida woman who died in 2005 after 15 years in a coma and unsuccessful attempts by her parents and Republicans in Congress to keep her alive.

The bishops’ order “fails to respect settled law that empowers patients with the right to refuse or direct the withdrawal of life-prolonging care,” said Barbara Coombs Lee, president of Compassion & Choices, which advocates for the right of terminally ill patients to make life-or-death decisions.

“It will apply irrespective of your religious faith, your stated wishes in an advance directive, or the instructions of your family.”

That’s not how the bishops’ decree will be carried out, Catholic hospital organizations insist.

The decree itself does not require life-sustaining care that would be “excessively burdensome for the patient” or would cause “significant physical discomfort.” If those exemptions don’t apply, a hospital will send a patient elsewhere rather than violate his or her expressed wishes, the organizations said.

“If it was unresolvable … we would transfer them or find some other means to accommodate them,” said Lori Dangberg, spokeswoman for the Alliance of Catholic Health Care, which represents California’s 55 Catholic hospitals.

There you go. “the November decree isn’t rigid and leaves room for accommodating patients’ wishes.” Because you can do what the Bishops tell you to do, or go somewhere else.

You can read the full San Francisco Chronicle article here.