Ethics of living with brain damage

		Making Sense  Out of Bioethics  Fr. Tad  Pacholczyk

Many families are faced with decisions about what to do when their loved ones suffer serious brain injury. When individuals are unlikely to come out of so-called "vegetative states," should we discontinue nourishing them by tube feeding? Is there anything wrong with causing patients in compromised states to die from starvation and dehydration under these circumstances?

We all lived through such a decision when Terri Schiavo died in 2005 in Florida. Her death raised disturbing ethical questions which continue to reverberate in society today.

I remember discussing her situation with somebody who remarked, "Well, I wouldn't want to live the way Terri did, with such poor quality of life." My response was, "Nobody would want to live the way she did - yet we all face deficits and disabilities that we have to live with. The bigger question is whether other people should be taking it upon themselves to remove feeding tubes that are effectively nourishing individuals who are compromised or disabled."

Not actively dying

Oftentimes people fail to grasp several of the key factors regarding Terri's condition.

First, they may mistakenly assume that she was actively dying from something, that she was hanging onto life by a mere thread. But Terri was not dying of any particular disease; she was living with a disability, surrounded by the love of her parents, siblings, and friends.

She had been living reasonably well with her disability for nearly 15 years, before her estranged husband made the decision to stop feeding her. Terri was an otherwise healthy young person who suffered under the burden of a serious brain injury, which left her unable to do many things on her own. In many ways, she was like a young, helpless child because of her injury. But she was not actively dying from anything.

Not brain dead

A second error that is sometimes made is to imagine that Terri was brain dead. I once did a segment for a national news program where the reporter asked me why Catholics were required to do everything in their power to keep people alive who were basically brain dead, like Terri Schiavo.

I had to spend a moment explaining how Terri was not even close to being brain dead, and that she had significant brain function. This was evident from her ability to initiate movement, her ability to breathe on her own (she was not on a ventilator), and her ability to pass through sleep-wake cycles.

Brain dead individuals can never perform these kinds of activities because the organ of the brain has died, and such individuals are, in fact, dead.

Death by dehydration

A third error that is made in analyzing Terri's situation is to suppose that tube feeding would be required only if it might improve or cure her vegetative state. Some bioethicists, including sadly some priests, seem to pursue this erroneous line of thought. One of them has written:

"Even though her parents disagreed, her spouse . . . asked that life support in the form of ANH [artificial nutrition and hydration] be removed. Was it ethical or sound? It seems it was. First of all, he maintained that this was her wish. Moreover, given the history of the case and sound medical opinion, he would be on sound ethical grounds if he requested that ANH be removed because it did not offer her hope of benefit."

Tube feeding, of course, cannot offer hope of benefit or cure for the vegetative state. Tube feeding is not meant to be a therapy for brain damage. Rather it offers a different kind of benefit, namely, the very real benefit of preventing dehydration and starvation, which nobody ought to die from.

Generally speaking, we ought to die from a particular pathology or a sickness, not from a state of dehydration or starvation that could easily be prevented by tube feeding. Thus, tube feeding was very effective for Terri, and did offer her benefit. In fact, it enabled her to be nourished for 15 years before being disconnected on March 18, 2005, resulting in her death nearly two weeks later.

'Proportionate to its purpose'

A Commentary issued by the Vatican's Congregation for the Doctrine of the Faith in 2007 describes the benefits of tube feeding:

"It does not involve excessive expense; it is within the capacity of an average health-care system, does not of itself require hospitalization, and is proportionate to accomplishing its purpose, which is to keep the patient from dying of starvation and dehydration. It is not, nor is it meant to be, a treatment that cures the patient, but is rather ordinary care aimed at the preservation of life."

Sometimes patients suppose that tube feeding can be generically declined, by specifying it beforehand in a living will. It would never be ethical, however, to decline an ordinary or proportionate means that is oriented towards preserving life.

We are morally obligated to use all such ordinary means, because we must take care of the life we have received as a gift. It is not ours to dispose of or act against, and we cannot ever ethically engage in suicide or euthanasia, nor specify such actions beforehand in written instruments, like living wills.

Absolute dignity of the human person

On the other hand, we should not draw the conclusion that tube feeding will always be required. There will be circumstances and situations where tube feeding may become extraordinary or disproportionate, as when it is no longer effective (the food is not absorbed), when it causes extreme discomfort, pain, or serious infection, or when it causes other grave difficulties such as repetitive aspiration (vomiting and breathing the vomit into the lungs, often resulting in pneumonia).

Normally, however, tube feeding is not unduly burdensome and is not unduly expensive or difficult, and therefore should be presumed necessary for patients who might need it, unless and until it is shown to no longer provide the benefit of nourishment, or to cause significant complications and harmful side-effects.

Often what lies at the heart of these debates is the view that a life must have a certain amount of "quality" or else it need not be continued. But every life has imperfect qualities, and some have more than others. It is never our place to judge whether another's life is "worth living."

Our duty is to provide loving care and strong support to those whose "quality of life" may be less than perfect, including those who are sick or those who may be struggling with serious disabilities like those in Terri Schiavo's situation, rather than targeting them for an early demise through the withholding of food and water.

Fr. Tadeusz Pacholczyk earned his doctorate in neuroscience from Yale and did post-doctoral work at Harvard. He is a priest of the Diocese of Fall River, Mass., and serves as the director of education at the National Catholic Bioethics Center in Philadelphia, Pa.

A 'right of conscience' decision affects others

		Eye on the  Capitol  Kim Wadas

Over the past several years, there has been increasing debate on the right of conscience.

As a legal standard, the right of conscience protects individuals from being forced to engage in actions that may violate deeply held moral or religious beliefs.

The most recognized example of the right of conscience is the conscientious objector, a person who refrains from engaging in combat or military service based on moral or ethical grounds. Our nation's government, its laws, and the Catholic Church have long recognized this right of conscience.

General right of conscience

However, a general right of conscience based on religious belief is not new or revolutionary. In fact, our state constitution explicitly upholds the right of conscience and has since the Constitution's enactment in 1848.

Article I, Section 18 of the Wisconsin Constitution protects the freedom of worship. Within this section, the Constitution specifically speaks to the liberty of conscience. The first portion of Section 18 states:

"The right of every person to worship Almighty God according to the dictates of conscience shall never be infringed . . . nor shall any control of, or interference with, the rights of conscience be permitted . . . "

The legal tradition of recognizing a person's right of conscience, and directly tying one's conscience to one's faith, is well established.

In Wisconsin, legislators recognized this when they enacted Wisconsin Statute s. 253.09, a provision that allows both hospitals and hospital staff to refrain from participating in procedures that would result in sterilization or abortion based on religious or moral objections. Several other states have similar protections as part of their laws. And, in federal law, provisions exist that provide conscientious protection for numerous procedures, including those involving abortion, sterilization, and execution.

Conscience in health care

Lately this topic has emerged in situations involving physicians and pharmacists and the provision of health care services. Providers, believing participation in a practice would violate their faith or moral beliefs, have refrained from performing certain procedures relying on their right of conscience. Certain commentators have even dubbed these individuals as the new "conscientious objectors."

However, some would argue that a right of conscience for professionals, especially health care providers, somehow deviates from the traditional view of conscience rights.

Those opposed to medical professionals refraining from performing procedures based on conscience objection say this goes beyond the standard used for military service. After all, an objection to engaging in combat does not affect the ability of others to exercise their rights. Others remain free to participate in military service.

Such an argument fails to recognize that the exercise of conscience will always affect others. When a person is allowed to forgo military service due to conscientious objection, the federal government must seek out another person to serve in the objector's spot. The objector's exercise of conscience directly affects this person.

The value of conscience

As a nation we continue to recognize the right of conscience because the promotion of conscience, even when it restrains the acts of society, serves us all. Conscience makes certain that scientific research stays within the bounds of human decency; that advocates represent their clients and not self-interests; and that justice, rather than punishment, is promoted by our legal system.

The exercise of conscience serves a purpose, and the right of conscience is both established and essential. By protecting its exercise, we affirm our constitutional tradition, ensure the worth of human action, and in so doing, protect our own dignity.

Kim Wadas is associate director of the Wisconsin Catholic Conference.

Tim Russert: The joyful warrior

		Grand Mom  Audrey  Mettel Fixmer

Tim Russert is dead.

Not since the assassination of President Kennedy have I seen such a stunning and thorough reporting of a celebrity death.

That's a slight exaggeration, of course, but it had a similar impact on me, and in the following hours the airwaves were filled with reflections on his life.

Now the famed reporter of the headlines was the headliner himself. On into the week the journalists delivered minute-by-minute accounts of Russert's wake and funeral.

Ironically, I was in my husband's room at the Blackhawk Senior Residence sharing a book about Kennedy's assassination, when the news flashed on TV announcing the fatal heart attack of this beloved NBC host of Meet the Press.

Just as I will always remember that on that fateful November day in 1963 I was in my dining room ironing when the TV news broke about Kennedy, I will probably always remember the setting for this shocking news story, too.

As with Kennedy, Tim Russert was more than a fallen hero to us. It was after reading his best selling book about his father, Big Russ and Me, we felt that we knew and loved him in a personal way.

The book was not only a hymn of praise for his father, a city worker in Buffalo, N.Y., but for his Catholic faith as well.

Catholic schools

It describes the kind of Catholic schools that our sons and daughters grew up in during the 50s and 60s. An education of the first class. When someone asked Russert how much of his childhood resembled the movie Going My Way, he replied, "Just about all of it."

Russert credits his Catholic school and particularly a Sister of Mercy, Sr. Mary Lucille, with booting him into journalism. He reported that he was a mischievous lad, who after one prank was called to the front of the room where Sister Lucille informed him that she was going to "channel some of that energy." He would be the editor of their school newspaper, which until that moment did not exist.

This was 1963 and the biggest news of the century was about to happen, the assassination of President Kennedy, Russert's idol.

He wrote emotionally about Kennedy, calling him "a martyr." Afterwards he sent a copy of the school newspaper to Kennedy's widow, his brother Robert, and to President Johnson.

"Some months later we received responses from all of them, which changed our lives," he recalled.

'A man of faith'

The best commentary I have read about the life and death of Tim Russert appeared in this week's Newsweek, "God, Politics, and the Joyful Warrior" by Jon Meacham. He writes, "In a capital that can seems soulless and even godless, Russert was a man of faith . . . The son of working class south Buffalo, N.Y., Russert moved among popes and presidents with an easy grace, and he was sweetly grateful for, and a little amazed at, his success . . . Russert's rise and reign can be best understood in the context of his religion, for his religion was not just a part of his life but his whole life, and his story is a common one for ethnic Catholics of his generation."

Meacham recounts how he had once told Russert that many people in Washington try to escape their roots and firmly close the door on where they came from, but a bishop he knew used to say that such insecurity was horribly debilitating. Russert pumped his fist and shouted, "Amen!"

He ends the Newsweek piece with an inside story about the moments just before Russert collapsed in his Washington newsroom. One of his final acts was to send a rosary he had just had blessed by Pope Benedict XVI to his friend, Senator Ted Kennedy. He adds, "'The Hail Mary' that Russert recited so often ends this way, 'Holy Mary, Mother of God, pray for us sinners now, and at the hour of our death.'"

What a man!

"Grandmom" likes hearing from other senior citizens who enjoy aging -- contact information.