Katie’s Story- Voices Online Edition Lent-Easter 2002

Autor’s note: The following was published in the November, 2001 issue of the New York State Nurses for Life’s newsletter.

Eileen Doyle, RN, president of New York Nurses, is one of my favorite people as well as a tremendous resource for me. I had called her about reprinting the pamphlet mentioned in the article and during our conversation, I told her Katie’s story. She asked me to write it up but, as I told her, I was not writing articles for awhile in order to help with my dying Aunt Jane.

But one night, I woke up at 3 am and felt compelled to write this story. I didn’t know why I felt such an urgency. It was as if something or Someone wanted it written right then.

I sent the story to Eileen the next day and she e-mailed me back that it was just in time for the next newsletter.

Four days later, the planes flew into the World Trade Center.

I am so grateful to have been able to contribute something — anything — to such a fine organization, especially at such a time of crisis.

KATIE’S STORY

In over 30 years of being a nurse, I’ve seen many amazing recoveries. But none were as gratifying as that of a woman I will call “Katie”.

I was working in an oncology unit when we were notified that we would be receiving an 84-year-old woman who was comatose from a massive CVA (stroke). Due to unusual circumstances, she was a permanent resident at our acute care hospital but the orthopedic unit where she stayed was being remodeled and we had an empty bed.

When Katie had her stroke, the doctors soon felt it was a terminal event and recommended to her out-of-town family that she just be allowed to die. IVs were stopped and Katie appeared to be in a coma. She wound up in the orthopedic unit to die. But one nurse told the doctor that Katie would open her eyes if “ice cream” was shouted into her ear and begged the doctor to at least give her IV fluids for awhile. The doctor reluctantly agreed and allowed a peripheral IV with a protein solution we called “TPN lite”. The IV could not sustain her indefinitely but it was something at least.

When Katie came to us, I was told by the off-going nurse that Katie was indeed totally unresponsive and I was warned that no one wanted to hear me say that she wasn’t. You see, for many years, both in ICU and this unit, I had been an advocate of talking to comatose patients and many of them unexpectedly “woke up” or improved. I was often teased about this and, after one incident, a fellow nurse half-seriously asked if I was a witch. Of course I wasn’t; I’m a practicing Catholic. I just believed that hearing was probably the last sense to leave a person and so I always talked to apparently comatose patients as if they were awake. I was surprised myself when many such patients eventually started to respond. Some even made a full recovery.

When I first met Katie, she did indeed seem unresponsive. But when I turned her to wash her back, I felt a slight resistance from her. I told the other nurses that I felt there was some consciousness there but they just laughed. But I felt it also helped preserve her dignity to be treated as if she could hear everything.

Katie was incontinent of stool constantly so we nurses were cleaning her up several times a shift. Some of the nurses resented that we had to spend such a large amount of time with a high-care patient as well as care for our very ill cancer patients..

Then something amazing happened. Within a few weeks Katie started to respond and even to speak.

At first, she just would just mutter nonsense but she would look at us when we spoke to her. The other nurses were delighted with this progress and soon Katie became our unit’s “project”. The IVs were getting harder and harder to maintain with time, so an order was received that we could try to feed her by mouth. It turned out she was really hungry and soon the IVs were stopped completely.

Katie was still confused but she was obviously responding to us. She seemed to plateau indefinitely at that stage when I got the idea of getting her a doll. I had heard that such doll therapy had helped some Alzheimer’s patients and I thought “Why not try it on a stroke patient?”

My daughters contributed one of their soft, washable dolls and Katie’s progress escalated and she became less confused. She clutched the doll constantly. We nurses couldn’t wait until her doctor saw her.

It was a couple of months after we received Katie before her medical doctor came by. I was told by the other nurses that his response after seeing Katie was “Well, ladies, I don’t think you did her any favors”. The nurses were disheartened and wondered how he could say that. I said that he was obviously a bit biased because she was still 84 years old and didn’t have a job. I said we would just have to work harder with Katie.

And thus began a kind of “charm school” for Katie. We nurses demanded that she say “please” and “thank you” appropriately and two nurses worked on teaching her how to flirt. Katie’s confusion was eventually totally resolved and she even seemed to recover most of her long-term memory. She could finally even feed herself with a spoon! However, our requests for physical therapy were rebuffed so she still had to travel by wheelchair.

It was a couple of months later when her doctor returned and this time Katie just astounded him. I was there when he came out of her room and said, “Ladies, write this up! It’s a miracle!” Straight-faced, I replied that it was really no miracle and that we accomplished such things every day. I predicted that if he gave us another week, Katie “would have a man AND a job”. The doctor laughed and said that he didn’t doubt this.

Katie became part of our unit’s family and everyone loved her. Unfortunately, we never heard from her real family and Katie never asked. But our unit had changed and Katie inspired us all.

Even our patients in supposed comas at the end of life would often wake up to acknowledge their loved ones before they died because we talked to them and encouraged family members to try to communicate with them. What a priceless gift!

It seemed that Katie’s story was having a happy ending and she would stay with us forever. But that was not to be.

Apparently, our medical director had never been informed that we had a non-cancer patient on our unit. Despite our pleas when he found out about Katie, he wrote a transfer order back to the orthopedic unit and even though we told the orthopedic nurses about Katie’s mental recovery, they were very unhappy about the transfer. There were many tears when Katie left us.

We oncology nurses continued to visit her but the trauma of the transfer took its toll. Katie soon regressed. She finally became confused again and would only mutter “I want a beer”. She stopped feeding herself and it wasn’t long before we heard she was found dead in bed. We oncology nurses all felt like we had lost one of our own family members.

But Katie’s story is a true testament to the power of love and respect for life. In our “right to die” society, it is not surprising that Katie was slated for death by withdrawal of treatment because she was considered a hopeless case. She only lived because we nurses took on the system and we won, not only for Katie but also for other patients written off by a callous new medical ethic that insists such people are “better off dead.”

It’s been several years since Katie died and I am now back working full-time in a general ICU. Once again, I’m having to fight attitudes that some patients are better off dead than possibly severely brain injured. One of my colleagues has even nicknamed me “cutie pie”, not for my looks (obviously), but because he laughingly says that when I refer to patients as “cutie pies”, these patients are usually “confused, combative, or demented”.

But I have seen the power of labels such as “hopeless” or “difficult” when applied to patients and I have seen the power of affirmation even save a life.

I remember Katie and smile.

Several months ago, I was called by a mother see her 19-year-old daughter in a nursing home, who had been severely brain-injured in a car accident nine months earlier. At the time of the accident, “Chris” (as I will call her) was so critical that her mother said she had even been approached about donating her daughter’s organs. (And this was a Catholic hospital!)

However, after a few days, Chris was able to get off the ventilator and progressed to what the doctors labeled a hopeless, “vegetative” state. Rehab efforts were considered futile at that point and, like many patients, the choice was between removing the feeding tube or sending Chris to a nursing home after a couple of months. What a choice! Death or ‘warehousing’. Why are there so few long-term rehab facilities for such patients or support for families who want to take their loved ones home? It seems that such severely brain-injured patients are the only ones doctors routinely give up on so soon and label family members who resist withdrawing basic medical care as “in denial”.

When I started with Chris, her eyes were often open but her mom said no one knew if she could see or hear. I started working with her as a volunteer for about a half hour once a week. I told the mom I couldn’t promise anything.

That was last winter.

Now, Chris has made so much progress that no one doubts that she is conscious. She smiles, cries, moves her legs on command, turns her head to look at people talking to her and now appears to be trying to vocalize! Just this week, a tech said she seemed to laugh when he choked on a soda. Chris’s doctor now recommends that she be taken home for more stimulation than she gets at the nursing home. (Since I wrote this in September, Chris has improved even more. She now eats yogurt by mouth and today when I visited her, she finally said Hi! )

Many of Chris’s nurses and techs are really excited. I brought them Jane Hoyt’s wonderful pamphlet “A Gentle Approach: Interacting with a Person who is Semi-conscious or Presumed in Coma” and the head nurse was interested in reprinting it for the other employees. I discovered this pamphlet through New York Nurses for Life and I believe it is a wonderful tool for nurses and families.

Chris’s story — like Katie’s — show that when nurses get ‘turned on’ to a ‘hopeless’ patient, great things can unexpectedly happen!

Nancy Valko, RN


The foregoing essay was published in the November, 2001 issue of the New York State Nurses for Life’s newsletter. Reprinted by author’s permission.

Enforcing the “Right to Die” The Case of Terri Schiavo

Voices Online Edition
Vol. XVIII: No. 3 – Michaelmas 2003

Enforcing the “Right to Die”
The Case of Terri Schiavo

by Nancy Valko, RN

By the time this article is published, Terri Schiavo may be dead.

Terri is not a convicted murderer. She is not terminally ill. Instead, she is a 39-year-old severely brain-injured woman whose parents and siblings, the Schindler family, have been waging a long legal battle to prevent Terri’s husband and the legal system from ending her life.1

In July, 2003, Terri was granted perhaps her last “stay of execution” by a Florida appeals court before her case is returned to Judge George Greer, a Florida judge who has previously and repeatedly ordered Terri’s tube feedings stopped. Although this will give the family’s lawyers some time to file an appeal with the Florida Supreme Court, hope is slim because that court has declined to even hear Terri’s case in the past.

The final hope to save Terri Schiavo’s life may lay with Florida Governor Jeb Bush, who has recently received thousands of petitions for him to intervene to save Terri’s life.2

 

Who is Terri Schiavo and Why Do Some People Believe She Should Die?
In 1990, 26-year-old Terri Schiavo mysteriously collapsed at home and suffered brain damage as a result of oxygen deprivation. A medical malpractice suit ensued and a trust fund was established to pay for Terri’s lifetime care. After the case was resolved, Terri’s husband, Michael, claimed that he now remembered statements his wife had made in the past about not want-ing to be kept alive in such a condition. (A former girlfriend has since disputed that claim because of statements Michael Schiavo made to her.) He petitioned a court for permission to stop her tube feedings and claimed that Terri was in a so-called “vegetative state”, despite videotape evidence of Terri, showing her smiling, responding to her mother and even apparently trying to talk.

Florida law allows food and water to be withheld if a person meets the state’s definition of “vegetative state” as “the absence of voluntary action or cognitive behavior of any kind” and “an inability to communicate or interact purposefully with the environment”. Experts for the husband claim that Terri’s visible responses are mere “reflexes” and disagree with other medical experts who have testified that Terri has at least some basic awareness and could possibly be helped with therapy.

Terri’s parents and siblings volunteered to take responsibility for Terri’s care, but Michael Schiavo has refused to relinquish guardianship or divorce Terri, despite living with and fathering a child by a girlfriend. He has also refused to allow rehabilitation services and, despite the fact that Terri is not terminally ill, had her transferred to a hospice facility three years ago.

Nevertheless, Judge Greer and the Florida courts have so far dismissed all concerns about the circumstances surrounding this case and maintain that the only issues are Terri’s disabled condition and her alleged desire to die. As a Florida probate court said in June, “we understand why a parent who had raised and nurtured a child from conception would hold out hope that some level of cognitive function remained. If Mrs. Schiavo were our own daughter, we could not but hold to such a faith. But in the end, this case is not about the aspirations that loving parents have for their children. It is about Theresa Schiavo’s right to make her own decision, independent of her parents and independent of her husband”.3

While the Schindler family endures such portrayals of themselves as being in denial over Terri’s condition — and incurs enormous legal bills fighting to save her — the courts have allowed Michael Schiavo to use the funds for Terri’s care to pay legal bills. George Felos, Mr. Schiavo’s lawyer who has been involved in several other “right to die” cases, has reportedly received more than $600,000 so far from the fund. His main medical expert was Dr. Ronald Cranford, who has testified in many “right to die” cases and who does not support even spoon-feeding for the so-called “vegetative” and people he terms “minimally conscious”.

Although Terri Schiavo’s case has received only a smattering of national media coverage, disability, pro-life, and other groups throughout the country have expressed outrage and alarm over this precedent-setting case. Terri’s case is being seen as the final dismantling of any legal safeguards to protect the mentally disabled from the deliberate starvation and dehydration that would be unthinkable for a convicted murderer or even an animal. 


The Catholic Connection
As Catholics, Terri’s parents Bob and Mary Schindler requested the help of their local bishop, Bishop Robert Lynch of the Diocese of St. Petersburg, Florida, to help save their daughter’s life.4 Instead, Bishop Lynch issued a statement that “The Catholic Church would prefer to see all parties take the safer path but it must and will refrain from characterizing the actions of anyone in this tragic moment”.5

This statement was particularly discouraging since Father Gerard Murphy, a pastor and former hospital chaplain, had already testified for Terri’s husband that withdrawing Terri’s tube feedings “would be consistent with the teaching of the Catholic church”.6

Unfortunately, there is a long history of Catholic priests and ethicists who have given similar testimony in other public “right to die” cases without rebuttal by the local bishop, despite Church documents and a 1998 statement by Pope John Paul II emphasizing that “the omission of nutrition and hydration intended to cause a patient’s death must be rejected”.7 Instead, these priests and ethicists uniformly mischaracterize people like Terri Schiavo as “gravely ill” and simple feeding tubes as “prolonging death”.

Unfortunately, these ethicists have often held prominent positions in Catholic health care and education for years. It has now become harder and harder to find a Catholic health facility that does more than provide mere lip service to principle on this crucial issue. It is telling that when Archbishop Justin Rigali of St. Louis issued a statement quoting Church teaching during the Steven Becker “right to die” case in 2000, many Catholic priests and ethicists from around the country criticized him for taking such an uninformed and “extreme” position in defense of life.8

Therefore, it is welcome news that Catholic groups are now challenging such misrepresentations in the Terri Schiavo case. Women for Faith & Family president Helen Hitchcock sent a letter to Florida Governor Jeb Bush asking him to “review Terri Schiavo’s case and to intercede on her behalf”, noting that Women for Faith & Family has filed amicus briefs in the similar Cruzan and Busalacchi cases.9 A Catholic media coalition sent a public letter to all the Florida bishops calling for them “to publicly condemn the injustice and moral evil of this deliberate act of euthanasia and to issue a plea for mercy to the Florida courts and to Governor Jeb Bush”.10 The Catholic Medical Association issued a statement that “discontinuing nutrition and hydration in this circumstance violates in its intention the distinction between ‘causing death’ and ‘allowing death'” and quotes the 1989 pastoral statement of the Bishops of Florida that states “We can never justify the withdrawal of sustenance on the basis of the quality of life of the patient”.11

The National Catholic Partnership on Disability, which includes Cardinal Francis George on its board, has highlighted the differences between Terry Wallis, a man who recently regained full consciousness after 19 years when his family refused to give up, and Terri Schiavo, whose husband is seeking to end her life. In their press release, Mary Jane Owen, executive director of the partnership, states, “those of us who live with assorted disabilities are aware that when any of us is deprived of their essential dignity and worth, each of us face that same discounting by the judgments of the culture of death”.12


A Precedent-Setting Case
The importance of saving Terri cannot be overestimated, not only for her right to live but also to apply a brake to the current “right to die” movement that seems bent on terminating people with severe brain injuries or conditions. It is no accident that people like Terri are put into hospices and cases like hers are included in “end of life” education programs for health care professionals and the public. It is no coincidence that withdrawal of treatment decisions have become the justification for the new non-heartbeating organ donation policies.13 And it is the ultimate irony that even families and patients who choose to live can now be overruled by medical futility policies being instituted at hospitals throughout the country.

Terri’s family has put up a courageous fight to save their daughter’s life and, if they finally lose, a terrible precedent will be set for coercing other families to give up fighting for their loved ones. If evidence of Terri’s responsiveness, as well as questions of possible perjury and bias, continue to be ignored by the courts, no one with a disability is ultimately safe from medical or legal discrimination.

Bob Schindler, Terri’s father, poignantly observes, “We pay great lip service in this country to disability rights, but as the degree of a person’s disability increases, the level of legal protection that person receives decreases”.

Notes
1 Schindler family’s website, www.terrisfight.org.
2 Petition to Issue a Stay in Florida Court Proceedings Regarding Theresa Schindler-Schiavo, available online at: www.terrisfight.org/Framesets/CNewsFrame.htm.
3 “Court Says Woman Has Right To Die” by Hugo Kugiya, Newsday, June 3, 2003.
4 “US Supreme Court Rules Woman Can Be Starved to Death over Parents’ Objections”, LifeSite News, 4/26/01. Available online at: www.lifesite.net/ldn/2001/apr/01042602.html.
5 “Husband Seeks to End Life of Brain-Damaged Wife” by Eve Tushnet, National Catholic Register, May 20-26, 2001.
6 Trial testimony of Father Gerard Murphy, January 24, 2000.
7 “Pope Tells American Bishops: Fight Death”, October 2, 1998. Includes full text of ad limina address delivered by Pope John Paul II in Rome to the bishops of California, Nevada, and Hawaii. Available online at www.petersnet.net/browse/553.htm.
8 See “Steven Becker and the Fight for the Soul of Catholic Health Care”, Nancy Valko, Voices Advent 2000. Available online at: www.wf-f.org/valkoadvent.html.
9 WFF’s July 21 Letter to Governor Jeb Bush concerning Terri Schiavo case. Available online at: www.wf-f.org/Bush-Schiavo.html. See text below.
10 “Catholic Media Group Calls on Florida Bishops To Defend Terri”, press release, July 23, 2003. Available online at: www.missionsun.org/faithwatch.htm.
11 Statement of the Catholic Medical Association on the case of Mrs. Terry Schiavo, by Robert J. Saxer, M.D, President of Catholic Medical Association and Steven White, M.D., President of Florida Catholic Medical Association.
12 “National Catholic Partnership on Disability Highlights Differences Between Two Neurologically Disabled Individuals”, press release July 10, 2003. Available online under Recent Headlines at: www.terrisfight.org.
13 See “Ethical Implications of Non-Heart-Beating Organ Donation”, Nancy Valko, Voices Michaelmas 2002. Available online at: www.wf-f.org/02-3-OrganDonation.html.


Nancy Valko, a registered nurse, is president of Missouri Nurses for Life, a spokesperson for the National Association of Pro-life Nurses and a Voices contributing editor.

The Issue is Equality (1993)

The following is an op-ed published in the St. Louis Post-Dispatch newspaper Friday, March 19, 1993 and reprinted on LifeIssues.net on 12/01/2001

By Nancy Valko, RN
Reproduced with Permission

It happened more than 10 years ago. I was pregnant with my third child and the controversy over Baby Doe was still swirling.

Baby Doe was a newborn boy who was born with Down Syndrome and a defect in his esophagus that needed surgical correction before he could drink from a bottle. Although this operation was routine for newborns with this problem, Baby Doe’s parents refused it, and a court upheld their decision. Several parents came forward offering to adopt Baby Doe and even pay for the operation. They were rebuffed, and Baby Doe died six days later without being fed.

I was shocked. Why didn’t the court or the law protect Baby Doe from such obvious discrimination? How could the parents’ lawyer maintain that it was a “loving decision”? Did that mean that parents who make sure their disabled children receive life–saving treatment are unloving?

Four months later I gained a new understanding of the gravity of those questions when my daughter, Karen, was born with Down Syndrome and an even more serious condition than Baby Doe’s: a life–threatening heart defect. I was stunned when Karen’s doctor said that there was an operation available with an 80 to 90 percent success rate, but that he would support my husband and me “100 percent” even if we chose not to operate.

I was furious. As a nurse, I knew that such an operation would have been presented as a technological blessing, not an option, if my baby were not mentally retarded. I told the doctor that I resented such discrimination, that my daughter had rights of her own, and that if he was prejudiced against children with Down Syndrome, he could not touch her.

To the doctor’s credit, he recognized his well–intentioned mistake and promised that he would do his absolute best for my daughter. And he did.

But it frightened me that there was such a biased attitude among even good, caring doctors. Could I really trust any of those health–care providers on whom my child and I depended? I came to realize that Baby Doe’s parents “private” decision had an enormous impact on public policy and attitudes, leaving my baby at risk if I did not protect her.

Even though both Baby Doe and my Karen died several years ago (one by parental decree, one despite the best medical care), I found them often on my mind as I followed the Christine Busalacchi controversy. She, like Baby Doe and Karen, had mental disabilities, although at different points on the disability spectrum. Christine’s father, like Baby Doe’s parents, felt his child had no quality of life and went to court to prevent feeding. Mr. Busalacchi also “won” the right not by changing the law but by political and judicial acquiescence.

But the same question raised in the Baby Doe case must be raised again: Should parents have absolute power over their children’s lives or do the state and society have an obligation to ensure that everyone, disabled or able–bodied, has a right to necessary care and treatment?

We have forgotten that, before the Baby Doe case, the answer used to be obvious.

Why do we view harm to children and the elderly as an issue that the state and society must address regardless of family involvement, while maintaining that no one may even question whether a father has a right to act on his opinion that his mentally disabled daughter would be better off dead? Are mentally disabled people any less vulnerable?

The Busalacchi controversy was not about making a medical decision: Christine was neither dying nor too sick to receive food. In fact, in 1991, she was able to take most of her food by mouth before her father insisted that only the feeding tube be used.

The controversy was not about the severity of disability: There are many people who cannot smile, eat, or laugh like Christine could (even as a so–called “reflex”) who are currently receiving care and treatment. And despite the offensive and medically untestable label of “vegetative,” a recent study showed that most of the families studied were unwilling to withdraw food and water.

No, the issue is really about equality. No one should be denied care or treatment required for others just because he or she has a mental disability.

But for now, the Missouri Supreme Court and the state administration have refused to act on cases such as Busalacchi’s, allowing family choice to be the overriding issue. And, as I personally found out, it is not hard to find doctors or others who would be willing to concur with the family in death decisions.

It is families like mine who have tried to give their mentally disabled loved ones the best quality of life possible who must now watch sadly as the planned death of Christine Busalacchi is portrayed as a victory for family rights.

The disability rights movement has had great success in ensuring access to parking spots, public buildings and education for the disabled. It’s a tragedy when the disabled cannot be ensured access to something as simple as food and water.

Awakenings: Coma Patients Can Recover

Nancy Valko
National Catholic Register
12.03.00-12.09.00
by Eve Tushnet
Reproduced with Permission

In her 30 years of nursing, Nancy Valko brought so many patients out of comas that other nurses started asking if she was a witch.

But Valko, president of Missouri Nurses for Life and spokeswoman for the National Association of Pro-Life Nurses, said that her methods were simple: talking to the patients, playing their favorite music, making simple requests.

Valko recounted, “I used to get teased for talking to comatose patients. I was even asked if I talked to my refrigerator.”

But her talk got results: One day, a 17-year-old boy came to the hospital in a deep coma. The neurosurgeon on duty said, “He won’t live until morning and it’s a good thing, because he’d be a vegetable.”

The boy lived, and soon he could even move at the nurses’ request — but he would never respond when the neurosurgeon was present.

Eventually he was released, and Valko never expected to see him again. But one day a handsome young man walked into the ward and said, “Do you remember me?”

The 17-year-old had come back to thank them for saving his life. When Valko mentioned the neurosurgeon, she recalled, “He got very serious.” The boy said, “I remember him calling me a vegetable. I wouldn’t move for him.”

Valko‚s experience is not unique. Dr. Mihai Dimancescu, a Long Island neurosurgeon who has worked with many patients in comas, noted a growing “recognition that people who have some kind of a brain injury, even if they’re in a coma for several weeks, do have the potential for recovery. A lot of hospitals are more aggressive in the early days of treatment, particularly the university hospitals and some of the larger community hospitals.”

Although Dimancescu stressed that no technique was at all certain, he explained that new knowledge of the brain has shown that “new connections can be made between brain cells where connections have been lost. Parts of the brain can take over the function of other parts that have been lost.”

And the techniques are improving constantly. Paulette Demato, program coordinator for the New York-based Coma Recovery Association, said that a flu medication called amantadine has had a few successes. One woman in New Mexico was given amantadine as a routine flu treatment and awoke from a 16-year-long coma, Demato said (see sidebar).

Give Them a Chance

These treatments are rare and uncertain. But bigger hospitals are starting to change the basic way they treat comatose patients.

In the smaller hospitals, though, many doctors and patient advocates say that the financial pressures of managed care lead doctors to push for withdrawal of costly treatments.

And even doctors can be misinformed about coma recovery.

Demato said, “Particularly with older patients, the medical community will say, ‘They’re not going to wake up, and they’ve already lived their lives’, so how about we disconnect them from all the machinery?”

She added that families are often “not given the opportunity to wait and see what happens. Very often the medical community will try to force a family’s hand and convince the family to cut off care.”

Dimancescu warned that patients in comas may not get proper nutrition or treatment for infections because they have been, in essence, written off by the medical staff.

Pope John Paul II stressed that withdrawal of nutrition and routine medical care is morally unacceptable during his Oct. 2, 1998, ad limina meeting with bishops from California, Nevada and Hawaii. “As ecumenical witness in defense of life develops, a great teaching effort is needed to clarify the substantive moral difference between discontinuing medical procedures that may be burdensome, dangerous or disproportionate to the expected outcome, and taking away the ordinary means of preserving life such as feeding, hydration and normal medical care,” the Pope said.

Valko said that she had seen an 84-year-old woman recover after her doctor and family almost decided to withdraw feeding. “We brought her all the way back,” Valko said. “She was feeding herself Jell-O with a spoon. We taught her how to flirt.”

Valko noted, “That was a woman who was supposedly totally gone; in fact, she was marked for no feeding.”

Valko said that some patients are unresponsive because they are “a little like turtles. They withdraw, out of fright.”

Hanging On Too Long?

But Joanne Lynn, president of Americans for Better Care for the Dying, said that anyone “in coma long enough to have been treated with some vigor” was so unlikely to recover that an awakening would be in “the range of the miraculous.”

“On the average, the error is to hang on too long and put families through too much,” Lynn said. She said that someone who had been in a coma for “a few weeks or a month or two” was extremely unlikely to recover, and that families should act accordingly. She compared dramatic coma-recovery stories to “tales of people who awake from the dead. We do not wait three days before we bury people.”

But neurosurgeon Dimancescu argued that “misconception number one” about patients in comas was the belief that “once somebody’s been in a coma for a week or more the situation is irreversible.”

He added, “A lot of people are diagnosed in a coma when they’re not. They do understand some things.” He urged doctors to “look for a response in an unusual way: eye-blinks, one for yes, two for no; or they might be able to respond by moving a finger.”

He stressed that people in comas may be able to hear: “The last thing to go is the hearing, and the first thing to come back is the hearing. What one has to do is try to be imaginative. Put yourself in the position of somebody who’s had a severe insult to the brain, in a hospital bed, probably very frightened.”

Dimancescu said that some people are skeptical of coma stimulation because they “believe that stimulation and therapy is recommended ad infinitum, no matter what the person’s progress is. That would be a waste of resources and create false hopes in the family.” In practice, he said, intense care was “usually recommended for about three months.”

He added that doctors‚ predictions were often wrong — patients who did not seem badly injured might never recover, but patients with greater injuries could awaken.

Valko summed it up: “We don’t know as much as we think we do, doctors and nurses.”

2004 Voices: The Pope’s Address on Feeding and the “Vegetative” State

Voices Online Edition Vol. XIX No. 3 Michaelmas 2004

Bioethics Watch The Pope’s Address on Feeding and the “Vegetative” State

 

by Nancy Valko, RN

“When someone suffers an illness or injury that puts them in a persistent vegetative state, they have put their first foot on the path to eternal life. When we remove artificial nutrition and hydration, we open the door and say, ‘Have a wonderful journey'”.

Sister Jean deBlois, ethicist, Aquinas Institute, Spring, 2004

“The sick person in a ‘vegetative state’, awaiting recovery or a natural end, still has the right to basic health care (nutrition, hydration, cleanliness, warmth, etc.), and to the prevention of complications related to his confinement to bed. He also has the right to appropriate rehabilitative care and to be monitored for clinical signs of eventual recovery”.

Pope John Paul II, March 20, 2004

Before 1972, when influential neurologists Drs. Fred Plum and Bryan Jennett coined the term “persistent vegetative state” (PVS) to describe a condition in which a person was presumed awake but unaware because of an injury or illness involving the brain, the idea of removing a feeding tube from a brain-injured person was simply unthinkable. The experience of the Nazi euthanasia program — which used medical personnel to end the lives of the disabled, mentally ill and others characterized as “useless eaters” — was considered the ultimate betrayal of medical ethics and still fresh in many minds.
But around this same time, the euthanasia movement was finally gaining traction with its “living will” document, where a person could request no heroic measures when he or she was dying. Because traditional ethics held that medical treatment could be withheld or withdrawn if it was futile or excessively burdensome, there were few objections to such a document and state legislatures started passing laws giving legal status to such documents.

However, it wasn’t long before “right to die” court cases involving people considered in PVS started to result in feeding tubes being withdrawn with the support and court testimony of some doctors and ethicists who maintained that PVS patients would never recover and that such patients would refuse medically assisted food and water. As a result, PVS began to be added to state “living will” laws and eventually such laws expanded to include documents allowing the withdrawal of virtually any kind of medical treatment or care by a designated surrogate when a patient was mentally unable to make decisions.
Some influential Catholic ethicists developed theological justifications for withdrawing food and water in the special case of PVS by arguing that there was no moral obligation to maintain the lives of such people who could supposedly no longer achieve the spiritual and cognitive purpose of life. Terms like “futile” and “burdensome” — the traditional ethical standard for withdrawing treatment or care — were redefined . “Futility” was now to mean little or no chance of mental not physical improvement, and “burdensome” to the patient, was extended to include family distress, medical costs and even social fairness in distributing “scarce health care resources”.

Despite myriad Church statements supporting the basic right to food and water (see sidebar page 34), some of these Catholic ethicists even testified in “right to die” court cases that their view was consistent with Church teaching, insisting that there was no intention to cause death by starvation and dehydration but rather merely withdrawing unwanted and useless treatment.

Unfortunately, some Catholic ethicists have moved even beyond PVS, and now include conditions such as Alzheimer’s and the newly named “minimally conscious state” (in which patients are mentally impaired but not unconscious) as additional circumstances in which giving a person medically assisted food and water, antibiotics, etc., is no longer obligatory.

Pope’s Address on “Vegetative State” Surprises Many

Against such a backdrop, Pope John Paul II’s March 20 address to the International Congress “Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas“, affirming the obligation to feed and care for patients considered in PVS, was, in the words of one Catholic ethicist, a “stunner”. Not surprisingly, reactions to the pope’s statement varied widely and some were scathing.

For example, ethicists Arthur Caplan and Dominic Sisti described the pope’s statement as “flawed”, “at odds with the way medicine has been practiced in the United States for well over a decade” and “fundamentally at odds with the American values of self-determination, freedom and autonomy”.2

Sister Jean deBlois, C.S.J., director of a master’s degree program for health care executives at Aquinas Institute in St. Louis, said that the pope’s statement places “an unnecessary and unfounded burden on family members faced with treatment decisions on behalf of their loved ones” and that “artificial nutrition and hydration… holds no comparison to a meal”.3

Father John F. Tuohey, who holds the endowed chair in applied health-care ethics at Providence St. Vincent Medical Center in Portland, Oregon, wrote an article in the June issue of Commonweal magazine treating the pope’s statement as a poorly argued thesis proposal by a misinformed student.4

Peggy Wilkers, president of Fitzgerald Mercy Hospital Nurses Association of Pennsylvania was quoted as saying the pope’s statement “will change very, very little” and that she and other nurses would base their patient care “not on what the pope says but on what the family wants”. She defended families “who would love to keep their loved one alive knowing full well that they will never be who they were before” but can’t take care of them at home and can’t find affordable long-term care.5

However, many others applauded the pope and at least one ethicist changed his opinion about withdrawing feedings as a result of the pope’s statement.6

Pro-life groups like The National Right to Life Committee and the American Life League welcomed the pope’s statement, especially in view of the ongoing Terri Schiavo “right to die” case in Florida. Women for Faith & Family posted the statement on its web site as soon as it appeared.

The World Federation of Catholic Medical Associations and The Pontifical Academy for Life issued a joint statement calling the pope’s words “deeply inspiring”.7
The National Catholic Bioethics Center described the pope’s statement as “a welcome clarification of Catholic thinking on one of the most vexing and controversial issues in health care”.8

Richard Doerflinger, Deputy Director of the Secretariat for Pro-Life Activities, US Conference of Catholic Bishops, wrote that the pope’s statement was not only an affirmation of human dignity but also “a recognition of the latest medical and scientific findings on the ‘vegetative’ state, reviewed at length during the congress itself. Misdiagnosis of the ‘vegetative’ state is common, prognoses (including predictions that patients can never recover) are far from reliable, and the assumption that this state of unresponsiveness entails complete absence of internal sensation or awareness is being seriously questioned”.9

However, the Catholic Health Association (CHA), a national group of more than 2000 hospitals and health organizations, was less enthusiastic.

As USA Today reported, “Until now, the 565 hospitals in the Catholic Health Association considered feeding tubes for people in a persistent vegetative state ‘medical treatment’, which could be provided or discontinued, based on evaluating the benefits and burdens on patient and family”.10

Thus, the pope’s words could have a profound impact on practices and policies in Catholic health institutions, many of which had relied on ethicists like Dominican Father Kevin O’Rourke of St. Louis University, who have long maintained that there is no benefit possible in maintaining the mere physical existence of PVS patients.

Father Michael Place, president of the CHA, said that the pope’s statement “has significant ethical, legal, clinical, and pastoral implications” that might even affect “those patients who are not in a persistent vegetative state” and will continue to be studied by CHA.11

In the meantime, CHA is advising its members that “Until such time as we have a greater understanding of the meaning and intent of the pope’s allocution, Catholic hospitals and long-term care facilities should continue to follow the United States Conference of Catholic Bishops’ Ethical and Religious Directives for Catholic Health Care Services as interpreted by the diocesan bishop”.12

Ironically, just a few weeks ago, a reporter from a national secular newspaper called me about Pope John Paul II’s statement. A self-described “cafeteria Catholic”, he was perplexed after talking to several Catholic health experts who maintained that the pope’s statement needed months of intensive study to understand its intent and meaning. Even this reporter said that he found the pope’s statement very clear and explicit and he could not understand the apparent evasiveness of these Catholic experts.

Challenge – and Opportunity While the average person might assume that the pope’s eloquent defense of the most severely disabled in our society would finally resolve the controversy over PVS and feeding tubes in at least Catholic health facilities, the battle is far from over.

Not only do we need consistent, unambiguous policies in Catholic health facilities that protect the lives of the severely brain-injured but, as the pope points out, we also need better support for such patients and their families. This is an area where the Catholic health system has a real opportunity to take a powerful leadership role in health care.

Patients and their families cannot help but benefit from new opportunities for appropriate rehabilitative care as well as spiritual, physical and emotional assistance.

And whether we are clergy, health care providers, ethicists or laypeople, we do well to heed the words of Jesus that the pope included in his statement: “Amen, I say to you, whatever you did for one of these least brothers of mine, you did for me”. (Mt 25:40)

FOOD AND WATER: Some excerpts from Catholic sources
“Ultimately, the word euthanasia is used in a more particular sense to mean ‘mercy killing’, for the purpose of putting an end to extreme suffering, or having abnormal babies, the mentally ill or the incurably sick from the prolongation, perhaps for many years of a miserable life, which could impose too heavy a burden on their families or on society”.13 Declaration on Euthanasia, May 1980

“Nutrition and hydration (whether orally administered or medically assisted) are sometimes withdrawn not because a patient is dying, but precisely because a patient is not dying (or not dying quickly enough) and someone believes it would be better if he or she did, generally because the patient is perceived as having an unacceptably low ‘quality of life’ or as imposing burdens on others”.14 NCCB Committee for Pro-Life Activities, 1992.

“The administration of food and liquids, even artificially, is part of the normal treatment always due to the patient when this is not burdensome for him: their undue suspension could be real and properly so-called euthanasia”.15 The Charter for Health Care Workers, 1995.

” the presumption should be in favor of providing medically assisted nutrition and hydration to all patients who need them”.16 Pope John Paul II, 1998

NOTES 1 “Prolonging Life or Interrupting Dying? Opinions differ on Artificial Nutrition and Hydration”, Aquinas Institute, Spring 2004 newsletter. Available online at Aquinas Institute website at http://www.ai.edu
2 “Do Not Resuscitate” by Arthur Caplan and Dominic Sisti, Philadelphia Inquirer, April, 1, 2004. Available online at: http://www.philly.com/mld/inquirer/news/editorial/8324997.htm?1c (registration required) broken link 6/27/2005

3 “Prolonging Life or Interrupting Dying?”
4 “The Pope on PVS — Does JPII’s statement make the grade?” by Fr. John F. Tuohey, Commonweal, June 18, 2004.
5 “Pope’s feeding-tube declaration pits religion, medicine” by Virginia A. Smith, Philadelphia Inquirer, April 16, 2004. Available online at: http://www.philly.com/mld/inquirer/news/ nation/8442625.htm broken link 6/27/2005

6 “Australian ethicist Rethinks Position on ‘Vegetative State'”, Catholic News. Available online at: www.cathnews.com/news/ 407/57.php
7 “Considerations on the Scientific and Ethical Problems Related to Vegetative State”, Joint statement by the Pontifical Academy for Life and the World Federation of Catholic Medical Associations. Available online at: http://www.vegetativestate.org/documento_FIAMC.htm [link broken 12/3/2007]
8 Statement of the NCBC on Pope John Paul II’s Address on Nutrition and Hydration for Comatose Patients. Available online at: www.ncbcenter.org/press/04-04-23-NCBCStatementon NutritionandHydration.html
9 “John Paul II on the ‘Vegetative State'” by Richard M. Doerflinger, Ethics and Medics, June 2004, Vol. 29 No. 6. Available online at: www.ethicsandmedics.com/0406-2.html 10 “Pope declares feeding tubes a ‘moral obligation'” by Cathy Lynn Grossman, USA Today, 4/1/04. Available online at: http://www.usatoday.com/news/religion/2004-04-01-pope-usat_x.htm no longer available, 6/27/2005

11 Ibid.
12 “Persistent Vegetative State and Artificial Nutrition and Hydration: Questions and Answers”, Resources for Understanding the Pope’s Allocution on Persons in a Persistent Vegetative State. Online for CHA members on website www.chausa.org
13 Declaration on Euthanasia, Sacred Congregation for the Doctrine of the Faith, May 5, 1980. Available on the WFF web site at: www.wf-f.org/declarationoneuthanasia.html 14 “Nutrition and Hydration: Moral and Pastoral Reflections”, NCCB Committee for Pro-Life Activities, 1992. Available online at: www.usccb.org/prolife/issues/euthanas/nutindex.htm
15 Charter for Health Care Workers by the Pontifical Council for Pastoral Assistance to Health Care Workers, 1995. Available online at: www.wf-f.org/healthcarecharter.html
16 Ad limina address of the Holy Father to US Bishops of California, Nevada and Hawaii, October 2, 1998. Available online at: www.wf-f.org/JPII-Bishops-Life-Issues.html

Nancy Valko, a registered nurse, is president of Missouri Nurses for Life, a spokesperson for the National Association of Pro-life Nurses and a Voices contributing editor. She is based in St. Louis, MO.

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September 2000: Do Hospitals Give Up on Severely Impaired Patients Too Soon?

Do hospitals give up on severely impaired patients too soon?

By Sandy Caspersen And Nancy Valko

Editor’s note: Following an operation in March 2000 to relieve pressure on the brain brought on by a cyst, Steven G. Becker, 28, of suburban St. Louis, was diagnosed as being in a “persistent vegetative state”. In late May, Becker’s wife, the attending physician, and St. John’s Mercy Medical Center decided to end assisted nutrition and hydration (administration of food and water by feeding tube). Becker’s mother sued to stay that decision and to require continued health care. A hearing on the matter is scheduled in mid-September.

Nancy Valko, R.N., was contacted by Sandy Caspersen, the aunt of Steven Becker, and together they wrote the editorial below which appeared in the St. Louis Post-Dispatch. At the demand of the Commentary Page editor, they deleted all references to Catholicism (“too narrow”). The Post-Dispatch “balanced” this pro-life editorial by another by Father Kevin O’Rourke, an influential St. Louis ethicist who gained national prominence in the Nancy Cruzan case, in support of her parents who wanted their daughter’s food and water discontinued. Father O’Rourke opposes continuing nutrition and hydration for disabled patients who seem unlikely to recover full “cognitive function”. In his view, food and water delivered by feeding tube is not “ordinary care” that we are obliged to give every disabled patient, even if full recovery seems dim.

THERE are many ways to kill a sick or disabled person. Removing food and water is only one.

Since Steven Becker’s March operation to relieve pressure on his brain, discussion has revolved around eliminating food and water, provided through a tube into his digestive tract. This medically assisted food and water was correctly called “comfort care” in records at St. John’s Mercy Medical Center before the decision was made to end his life. Now the hospital — as well as the media — calls it “life support”.

But St. John’s and its ethics committee have also decreed that other treatments — antibiotics, other beneficial medications, physical therapy and a possible operation to correct his now-infected brain shunt — can also be denied to Becker even though the legal process is still proceeding.

Becker has been deemed by his doctors to be in a “permanent vegetative state”, defined as “awake but (assumed) unaware”. That diagnosis is disputed by at least one other doctor. But pain medications and muscle relaxants, which can cause sedation, are among the few treatments that may be provided. Why would a supposedly unresponsive person even need pain medication?

With the kind of “death ethics” mentality promulgated by the hospital’s ethics committee, it isn’t surprising that even Becker’s hygiene has suffered. When family members have offered to help by bathing him themselves during their visits, their requests for washcloths were unmet, and family members now bring their own.

It is outrageous that St. John’s ethics committee can sanction the denial of beneficial treatment, which had helped Becker progress and fight infection, while continuing Becker’s feedings until a September hearing only because of a court order.

Is this where the “right to die” has brought us?

Becker’s case must be setting a speed record for such public cases, but this ignores the studies and news reports showing that many severely brain-injured people eventually recover — sometimes even fully recover — with time and treatment.

Some members of the family asked for this time for Becker. However, the ethics committee decided that he would not make a good enough recovery. Becker’s wife, Christie, has accepted its recommendations to end his life. Other family members were then offered similar counseling to induce them to accept the recommendations and thus avoid controversy, but they resisted. Now Becker’s fate will be decided by a judge.

Becker never chose this situation. He had taken courses toward a possible career as a nurse. The court-appointed guardian’s report stated that because he was medically sophisticated enough to understand ethical dilemmas and had allegedly made comments that he wouldn’t want to live like people in other public “right to die” cases, this constituted “clear and convincing” evidence that he would rather die than potentially live with severe disabilities. However, some members of his family say that, even after he had consulted with a neurosurgeon and knew brain surgery was being considered, he adamantly refused to sign a living will or other advance directive. If he had signed such a directive, this would have made his wishes known about refusing treatment if he were unable to speak for himself.

Becker’s wife supposedly disputes this incident now, but the fact remains (and the hospital record proves) that he did not sign an advance directive, which the law required he be offered. This should confirm that he did not choose to refuse treatment even though he was aware of the possibilities. This refusal is his last known health-care decision, so why should alleged comments from years ago be considered more persuasive?

What does it take to refuse the “right to die”? We all should be asking this question.

With the push to contain costs, coupled with multi-million-dollar malpractice suits when a person survives but is disabled, we must also be alert to an inherent conflict of interest when a hospital’s ethics committee urges withdrawing or limiting necessary care. Also, doctors and nurses have the right and the responsibility to resist a “death ethics” mentality and protect their most vulnerable patients who cannot defend themselves due to age, disability or mental impairment.

Steven Becker isn’t the first person to face death by denial of basic care — despite refusing to sign a living will or other advance directive.

But, please, let him be the last.

Editor’s note: for a follow-up on Steven Becker’s story, see “A Lethal Evolution”.

Nancy Valko is president of Missouri Nurses for Life, and writes “Bioethics Watch” for Women for Faith & Family. (The above editorial is reprinted with the permission of the author.)

1994: An Exchange on”The Sanctity of Life Seduced”

In April 1994, First Things magazine published an article titled “The Sanctity of Life Seduced: A Symposium on Medical Ethics”. The article consisted of an essay by Daniel Callahan, then president of the Hastings Center,  on the so-called “persistent vegetative state” and the issue of tube feedings. The article also contained several responses by some prominent ethicists.

I wrote my my own lengthy response to Mr. Callahan in a letter to the editor and, to my surprise, it was published in the August edition of the magazine along with his response to my letter.

Here is the published exchange:

An Exchange on Life and Death

While I was fascinated by Daniel Callahan’s article in  “The Sanctity of Life Seduced”  and the responses to it (April), I was concerned by the automatic acceptance of some facts and conclusions that do not hold up under scrutiny. As we all know, good ethics must be backed by accurate facts.

Take the “persistent vegetative state,” an offensive and dehumanizing term coined in 1972 and used to describe a level of brain injury that assumes the permanent loss of upper brain function. Proponents of not feeding the “vegetative” have long been frustrated by the lack of a diagnostic test for this condition and the surprising number of reports of “vegetative” people who recover, sometimes even to full mental function. This includes not only media stories about people such as Carrie Coons, but also studies like the one reported in the June 1991 issue of Archives of Neurology which found that 58 percent of people with a firm diagnosis of PVS recovered consciousness within the three-year follow-up interval of the study. Just as importantly, the researchers were unable to identify factors that could predict in advance which patients will ultimately wake up. It is hard to escape the conclusion that PVS has become a political, rather than a medical, diagnosis.

As a nurse who has personally witnessed the recovery of supposedly hope less patients, I am not surprised by these studies and reports. What has surprised and frightened me is the practical reality that many brain- injured people are no longer even given the chance to recover. For example, families have been told that their brain-injured loved one has a nil or virtually nil chance of recovery within hours after the precipitating event despite the lack of certitude. The false picture of Nancy Cruzan as an unmoving, unresponsive corpse hooked up to an array of machinery is a powerful and terrifying image to these families in crisis. It does a terrible injustice to people for us doctors, nurses, and ethicists to pretend to know things we cannot know- presumably in order to spare patients and their families potential further suffering. Have we become so callous about death that we can be comfortable with denying a person even a chance at recovery?

Another fact Mr. Callahan’s article fails to mention is that the controversy over assisted feeding has spilled over to other care and other conditions. For example, the non-technological spoon-feeding of the supposedly “vegetative” Christine Busalacchi was considered just as ethically useless as tube feeding by Fr. Kevin O’Rourke, the director of the Center for Health Care Ethics at St. Louis University . . . . It has proved both legally and ethically impossible to limit non-feeding to just the “vegetative.” The result has been the opening of a virtual Pandora’s box of ethically rationalized death decisions such as rationing and even, in some cases, physician-assisted suicide.

I also must take issue with the anti-technology conclusions of Mr. Callahan. I fear he forgets that medical innovations, both technological and non-technological, result from a desire to cure, treat, or palliate suffering conditions, not out of a desire to torture people. For example, feeding tubes were not invented over one hundred years ago to “cure death” or interfere with the peaceful, painless deaths our ancestors supposedly had. Feeding tubes were invented to relieve real cases of real suffering. For example, it would be maddening to watch a three-year-old starve to death because his throat was irreparably burned. It is thus not surprising that some compassionate person would invent a way to feed people who cannot swallow.

Mr. Callahan is right when he describes an “inability to eat” or “a failing desire to eat” as a part of the natural dying process. This is true, for example, in end-stage cancer when, as organs fail, the body cannot assimilate or excrete food and fluids. In these cases, we do not deny food and fluids, but rather we give people what little they desire or need. Feeding tubes are not instituted in these cases because food and water are futile and would cause more discomfort as fluids build up in the body. These people do not dehydrate to death; they die of their cancer.

However, it is a very different matter in situations of anorexia nervosa, obstruction, paralysis, diminished consciousness, etc. To equate the inability to walk to a refrigerator or to get food past a damaged esophagus, etc., with a true dying process is patently false. Moreover, while truly dying people experience little if any discomfort from a reduced intake, dehydration is a miserable condition for the non- dying. I often care for people with an admitting diagnosis of dehydration. Quite frankly, these people feel and look rotten. They are weak, frightened, and often confused. After successful treatment, they perk up and are elated with the change in their condition. We are not prolonging death, we are treating an uncomfortable condition.

After twenty-five years of nursing, dealing with bioethical issues on both a personal and professional basis, and serving on both medical and nursing ethics committees, I have witnessed a sea change in ethics from what is right to what is legal to now what is cost-effective . Even the newly sacrosanct ethic of family or individual “choice” regarding a right to die is fast eroding under the juggernaut of new ethical thought that redefines “futility” and agonizes over “wasting” health care resources. Witness the recent case where a young Detroit couple were replaced as guardians after failed attempts by health care providers to induce them to discontinue the treatment of their critically ill, brain-damaged two-month-old.

Recovery is now being redefined as full or near-normal return of mental and physical function, which flies in the face of the reality all of us in health care know and reinforces the unhappy bias that the disabled have long tried to dispel.

Mr. Callahan presents us a false choice between either an awful, technologically prolonged death or a simple, painless passage into the Great Beyond without “technology.” Instead, I have often presided at the deaths of people where the only medical interventions employed were to provide comfort. I have often silently blessed the discoverers of morphine, oxygen tubes, and air beds as I held hands with the dying patient and his or her family.

I have also silently wondered at the great gift of life as I fed, washed, and talked to the comatose, the confused, the severely disabled, and the truly dying. I have often sat with families and patients discussing do-not-resuscitate orders, the pros and cons of treatments, hopes and dreams, and inevitably, in some cases, how death will come. Not once did I feel that the patient or I was diminished in dignity or wasting health care resources.

Thus, I must take exception to Mr. Callahan’s view that health care providers are prone to a “technological seduction.” I am just one of many doctors and nurses who advocate against overtreatment just as strongly as we advocate against undertreatment. But medicine is not perfect; mistakes do happen. Just as some people die during a simple appendectomy, outcomes are often unpredictable. Decisions about technology are not automatically wrong if the outcome is less than hoped for or expected.

Rather than fighting a supposed “technological seduction,” I submit that the biggest problem in ethics today is a “death seduction.” I suspect that it is a fear of loss of control and a disdain for dependency, as well as a fascination with cost/benefit analysis, rather than an acceptance of inevitable death that leads many ethicists to support the so-called “right to die.” (Oddly, the development of newer and exotic technologies such as in vitro fertilization have been virtually immune from a similar cost/analysis and criticism of technological seduction.)

Sadly, Mr. Callahan’s views inevitably distort the reality of inevitable death for all of us into a “duty to die” for some of us.

Nancy Guilfoy Valko, R.N.
St. Louis, MO

Daniel Callahan replies:

I find Ms. Valko’s letter somewhat baffling, uncertain whether we disagree as much as she implies or whether I have made the factual errors she attributes to me. She begins by talking about the persistent vegetative state, noting that there have been many mistaken diagnoses. But at no place in my article did I discuss the special problem of diagnosing the condition. In fact, I fully agree with her about the many mistakes that have been made, and no less agree that it’s wrong to give up on patients too quickly; of course every patient should have a chance at recovery.

I think she is herself wrong, however, to say that “PVS has become a political, rather than a medical, diagnosis.” The problem is that any diagnosis of the syndrome (it is not a specific disease) must be probabilistic and based on indirect evidence. This is also true of Alzheimer’s Disease, definitively diagnosable only in a postmortem autopsy-but no one doubts the existence of such a condition. As Ms. Valko herself says at the end of her letter, “medicine is not perfect; mistakes do happen.” Why does she not apply her own standard in the case of mistaken diagnoses of PVS, instead of implying it is a fictitious condition?

It is quite true that I did not mention that “the controversy over assisted feeding has spilled over to other care and other conditions.” I was not trying to write an article on the full range of conditions under which it might, or might not, be justified to terminate treatment. I have done that in The Troubled Dream of Life and, with her, I do not believe it right to limit feeding under any of the circumstances she mentions. I also agree that a person who cannot walk to a refrigerator is not dying and I have explicitly denied there is evidence to show we are “wasting” money on the dying (in Setting Limits , pp. 130-133).

I do not believe that I come to anti-technological conclusions. Technology can not only helpfully and validly save and extend life, but it can also provide many means of comfort for the critically ill and dying. My concern is our culture’s obsession with technology, which too often leads us to use it unthinkingly and insensitively. As I said in the article, “If technology threatens to leave us worse off, and we nonetheless feel obliged to use it, we have then indeed become its slaves.” I also argued that “doctors should feel as great an anxiety that a patient will die a poor death from technological excess as the present anxiety that the patient will die because there is too little technology.” When she says that she worries both about undertreatment as well as overtreatment, it seems to me that Ms. Valko and I are not that far apart.

Finally, I find no basis whatever in the article I wrote for saying that my “views inevitably distort the reality of inevitable death for all of us into a ‘duty to die’ for some of us.” I reject totally the idea of a duty to die, and always have. It is unwarranted and insulting to attribute that view to me.