End-of-Life Choice, Palliative Care and Counseling

Posts Taggedpermanent vegetative state

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.

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.

Catholic Bishops Lay Down the Law on Feeding Tubes

On November 17, 2009, with little fanfare, the United States Conference of Catholic Bishops issued a directive for Catholic health care that could bring distress and grief to hundreds of thousands of American families each year. Compassion & Choices wants you to know how this limits your healthcare choices.

“This won’t affect my family,” you may say to yourself. “We aren’t even Catholic.”

That doesn’t matter. Approximately 30% of Americans receive healthcare or reside in Catholic institutions, and this edict could affect any of them.

A little known but far reaching aspect of the Church’s organizational structure requires every hospital, nursing home, assisted living center, etc., with a Catholic charter to abide by a set of rules called “Ethical and Religious Directives for Catholic Health Care Services.” The 72 directives itemize exactly how the services you receive will conform to Catholic doctrine, as promulgated by the Holy See and enforced by its Congregation for the Doctrine of the Faith (formerly known as the Holy Office of the Inquisition.)

The Bishops’ latest change to Directive #58 says everyone who needs a feeding tube to stay alive must have one surgically implanted, and must keep it indefinitely. This will apply to anyone in a permanent coma from stroke or trauma, in persistent vegetative state or with advanced dementia, having lost the ability to eat along with other sentient activity. It will apply irrespective of your religious faith, your stated wishes in an advance directive, or the instructions of your family.

The Catholic Healthcare Association was quick to point out the new Directive does not apply to patients who are actively dying. But those are not the usual recipients of feeding tubes anyway. Rest assured, it applies in all situations where we most cherish our own authority to make healthcare decisions.

Catholic hospitals probably hoped this day would never come. The Bishops put them in a real bind. Ever since Pope Benedict XVI (Formerly Joseph Cardinal Ratzinger, Prefect of the Congregation for the Doctrine of the Faith) articulated this rule during the Terri Schiavo fiasco, hospital spokespeople have held tenaciously to a balancing rationale that allowed them to honor a person’s stated wishes in these matters. Last month the Bishops pointedly dismissed the “untenable positions” of “some Catholic ethicists” and made Benedict’s strict rule official and binding. Now hospitals and nursing homes have no choice but to enforce Catholic doctrine universally over patient wishes.

What had been Directive #58′s “presumption” in favor of feeding tubes is now an “obligation” and the language about balancing is gone. Pity the poor hospital administrators. As much as they may wish to honor the advance directives of patients and the heartfelt decisions of grieving families, the Church just won’t let them do that anymore.

I know a lot of readers are incredulous. “Surely,” you think, “no sane church would force hundreds of hospitals to systematically trump established principles of patient autonomy and force disruption, adversity and grief on families.” It seems unfeeling, unethical, and hardly good for business.

Well, think again, for when it comes to settled dogma, this church does not compromise.

Let me describe a precedent, and a clue to what lies ahead for families: For decades Catholic hospitals have subjected new mothers to unnecessary inconvenience, pain and surgical risk to enforce Directive #53, which forbids sterilization. Every doctor knows the safest, most convenient time to perform an elective tubal ligation is immediately following delivery of a baby. The uterus is high and fallopian tubes readily accessible. Yet women delivering in Catholic centers who request this simple operation must recover from delivery, then submit to a second hospitalization, a second anesthetic and surgical risk and the pain of a second procedure, at a non-Catholic institution. Not to mention the cost of the second operation, routinely borne either by insurers or tax payers — that is to say, all of us.

From the Bishops’ perspective, this is a small price to pay to maintain what they call “the distinctive Catholic identity of the Church’s …health care ministry.” Central to that ministry is imposition of the Church’s “moral teaching” on all its patients.

Many of us view Catholic hierarchy as having long ago squandered any moral authority they might once have had. Church officials cannot engage in conspiracies to hide crimes of sexual molestation and protect child abusers on one hand, and on the other, presume to dictate legitimate healthcare decisions. Certainly they have no authority over decisions as central to personal dignity as whether I will accept or reject medical feeding to keep my comatose body alive. The sanctimonious audacity of these Bishops simply takes my breath away.