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.)

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2009 Mercatornet: Have death panels already arrived?

Have death panels already arrived?

The case against: an experienced nurse worries that Obamacare will entrench an existing quality-of-life ethic.

Nancy Valko | Nov 12 2009 | comment

Medical ethics are concerned with care for a patient’s welfare, something huge institutions are not very good at. The controversy about “death panels” in proposed health care reform legislation is to be expected. As a nurse, despite all the soothing noises from the Obama administration, I do believe there is cause for serious concern.
For example, Compassion and Choices (the name of the pro-euthanasia Hemlock Society after its merger with another “right to die” group) boasted that it “has worked tirelessly with supportive members of Congress to include in proposed reform legislation a provision requiring Medicare to cover patient consultation with their doctors about end-of-life choice.”

“End-of-life choice” might have been an innocent term a generation ago, but now in three American states “end-of-life choice” includes legal assisted suicide. No wonder people were worried when they read these words in HR 3962 (also known as the Pelosi bill). It even includes a whole section on “Dissemination of Advance Care Planning Information” that is problematic and misleading.

In addition, although the idea of health care rationing was originally dismissed as a myth, ethicists and the mainstream media admit that health care rationing is necessary. Government committees have been proposed to set rules for health care services.

Is ethical health care reform needed? Of course. In 2003, I was privileged to serve on a Catholic Medical Association task force on health care reform. Many good ideas, such as health-savings accounts, ways to help the uninsured poor, and strong conscience-rights protections, were discussed. The results were published in a 2004 report entitled “Health Care in America: A Catholic Proposal for Renewal”. The Obama Administration has rejected most of these proposals.

Ethics and health care reform

Since I first started writing about medical ethics and serving on hospital ethics committees, I have seen ethics discussions evolve from “what is right?” to “what is legal?” to “how can we tweak the rules to get the result we think is best?” This attitude is not very reassuring when we are considering a massive overhaul of the US health care system.

Former vice-presidential candidate Sarah Palin has been ridiculed for coining the term “death panels”. But it resonated with me. In 1983 my daughter Karen was born with Down syndrome and a severe heart defect. Even though Karen’s father and I were told that her chances for survival were 80 to 90 percent after open heart surgery, we were also told that the doctors would support us if we refused surgery and “let” Karen die. We refused to allow such medical discrimination against our daughter.

Later on we were shocked to learn that one doctor had written a “do not resuscitate” order without our knowledge. Apparently he thought I “was too emotionally involved with that retarded baby”.

In later years, I was asked if I was going to feed my mother with Alzheimer’s. And then, after my oldest daughter died from an apparently deliberate drug overdose, I was told that it is usually a waste of time to save suicide attempters.

Did evil people say these things? No. These doctors and nurses were otherwise compassionate, caring, health care professionals. But they are just as vulnerable as the general public to the seductive myth that choosing death is better than living with terminal illness, serious disability or poor “quality of life”.

When government committees and accountants take over health care, will things get better?

Common sense and ethics

Health care does not occur in a vacuum. Real people — patients, families and health care providers alike — are affected when economics and new ethical rationales trump basic needs. The Good Samaritan did not ask whether the man lying on the road had health insurance. The Hippocratic Oath established a sacred covenant between doctor and patient, not health care rationing protocols. I strongly disagree with ethicists who contend that new technologies and economics demand new ethics.

I am tired of hearing some of my medical colleagues talk about patients who “need to die”. I am saddened to hear many of my elderly, frail patients fret about being an emotional and financial burden on their families. I am outraged when I read editorials arguing that those of us who refuse to participate in abortion or premature death should find another line of work.

I recently attended a 40th anniversary nursing school reunion. We remarked on how much has changed. Some things are better — uniforms, equipment and technologies, for example. But some things are worse, especially ethics.

People are often surprised that even back in the late 1960s, we had do-not-resuscitate orders and spoke to families about forgoing aggressive medical treatment when patients seemed to be on the terminal trajectory to death.

But, unlike today, we did not immediately ask them whether we could withdraw food, water and antibiotics to get the death over with as soon as possible. Back then, we were often surprised and humbled when some patients recovered. Today, too many patients don’t even get a chance. Doctors and nurses are too quick to give up hope.

Back then, ethics was easily understood. We didn’t ever cause or hasten death. We protected our patients’ privacy and rights. We were prohibited from lying or covering up mistakes. We assumed that everyone had “quality of life”; our mission was to improve it, not judge it.

Medical treatment was withdrawn when it became futile or excessively burdensome for the patient — not for society. Food and water was never referred to as “artificial” even when it was delivered through a tube. Doctor and nurses knew that removing food and water from a non-dying person was as much euthanasia as a lethal injection.

“Vegetable” was a pejorative term that was never used in front of patients or their families. And suicide was a tragedy to be prevented, not an alleged constitutional right to be assisted by doctor and nurses.

Today we have ethics committees developing futility guidelines to overrule patients and/or their families even when they want treatment continued. We have three states with legal assisted suicide. We have even non-brain dead organ donation policies (called non-heartbeating organ donation or donation after cardiac death). Some ethicists even argue that we should drop the dead donor rule.

We see living wills and other advance directives with check-offs for even basic medical care and for incapacitated conditions like being unable to regularly recognize relatives. We are willing to sacrifice living human beings at the earliest stages of development to fund research for cures for conditions like Parkinson’s rather than promote research on ethical and effective adult stem cell therapies.

We are inspired by the Special Olympics but support abortion for birth defects. We now talk about a newborn child as another carbon footprint instead of as a blessing and sacred responsibility.

I could go on and on but I think you get the idea.

Death panels are not the overwrought fantasy of right-wing nut cases. Real “death panels” are already at work. They have been created by apathy, misplaced sympathy, a skewed view of tolerance and an inordinate fear of a less than perfect life. Death panels? In the famous words of the comic strip character Pogo, “We have met the enemy and he is us.”

Nancy Valko is president of Missouri Nurses for Life and a spokeswoman for the National Association of Pro-life Nurses.

1996 National Catholic Register: A Compassionate Response

A Compassionate Response

 Sunday, Nov 10, 1996 1:00 PM Comment

In 1992, David and Anne Andis had a little girl with anencephaly whom they named Emma. Although an ultrasound showed the possibility of anencephaly only 10 weeks into the pregnancy, David and Anne, who are not Catholic, made the decision not to abort but found little support or information on dealing with their family’s crisis.

Although Emma lived only five days after birth, the Andises found that being able to know and love Emma during her short life was a meaningful and healing experience for them and their family. In response to their situation, they helped to start the Anencephaly Support Foundation to help other parents, families, and friends deal with the physical and emotional challenges of having (and losing) a baby with anencephaly. They now give such practical tips as the best kind of bottle to use if the baby can suckle and how to care for the skull defect as well as linking parents with other parents who have had children with anencephaly.

David and Anne are also spearheading an effort to establish a national birth defects registry and federal funding to study the causes of birth defects, hoping this information will lead to some answers and help prevent future babies from dying. Currently, low levels of the vitamin folic acid has been linked to the incidence of anencephaly but further research is considered warranted.

The Andises maintain an Internet site and also recently produced a videotape called The Anencephalic: A Suitable Donor? which deals with the controversial subject of using anencephalic infants as organ donors before death.

The Anecephaly Support Foundation can be reached by the Internet address http://www.asfhelp.com or by the toll-free phone number 1-888-206-7526.

Nancy Valko

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.

2008 Voices: Catholic San Fransisco article on the End of Life Conference. Nancy was one of the three speakers.

Catholic San Fransisco article on the End of Life Conference. Nancy was one of the three speakers.

Conference spotlights thorny end – of – life questions
By Michael Vick

Nancy Valko, one of three speakers at the Sept. 13 End – of – Life Issues Conference held at St. Mary’s Cathedral in San Francisco, came to the field of bioethics through deep personal tragedy. In 1982, Valko gave birth to her daughter Karen, born with Down syndrome and a rare heart defect.

Valko’s doctor gave the child only two months to live, saying the defect was so severe it seemed inoperable. She refused to accept the prognosis, and decided to use her training as a nurse to research other alternatives. She found a surgery that could correct the defect that had a 90 percent chance of success.

Reviewing the surgery, the doctor agreed, but made it clear to Valko he would support her either way.

“Either way for what?” Valko asked. She then realized the doctor would approve of withholding treatment, not because it had no potential for success, but because her child had Down syndrome.

Click links below for complete article.

http://www.catholic-sf.org/default.htm

http://www.catholic-sf.org/FPArticle215.htm

2012 Voices: Special Needs, Special Gifts

Voices Online Edition
Vol. XXVII, No. 1
Lent – Eastertide 2012

Special Needs, Special Gifts

by Nancy Valko, RN

Last October during National Down Syndrome Awareness month, a new test for detecting Down syndrome as early as 10 weeks into pregnancy was announced with great fanfare by many news organizations.1 Routinely mentioned was also the sad fact that around 90% of babies diagnosed with this condition are then aborted. Indeed, although more people than ever identify themselves as pro-life in public opinion polls, there is still majority support for abortions in the so-called “hard case” of birth defect.

Ironically and also in October, a new study was published in the American Journal of Medical Genetics2 on how the vast majority of people with Down syndrome and their parents viewed their lives as happy. For example, 99% of people with Down syndrome said they were happy with their lives, 96% of siblings expressed affection, and 97% of parents said they were proud of the child with Down syndrome.

These statistics might surprise the average person but not those of us who have had a child with special needs. And while Down syndrome has become the template of public attitudes toward abortion for unborn babies with birth defects, Down syndrome is only one of thousands of conditions that can result in special needs.

When I was a young student nurse, I had part of my training at Cardinal Glennon Children’s Hospital here in St. Louis. I met many parents who were caring for children with a variety of problems, some devastating or even lethal. I was amazed and inspired by the parents I met but I knew for sure that I could never do what they did.

When I started my family, I wondered how I would cope if one of my children was born with special needs but I was reassured by the old axiom that “God never gives you more than you can handle”. Since I didn’t think I could handle a child with special needs very well, I decided I was “safe”.

But in 1982, with the birth of my daughter Karen, I discovered the real truth about the old axiom: God is always ready to give us the grace, joy, and love to deal with any situation.

This is why I was so honored to be asked to contribute to an extraordinary new book titled A Special Mother is Born: Parents Share How God Called Them to the Extraordinary Vocation of Parenting a Special Needs Child by Leticia Velasquez. Leticia is a talented Catholic writer and mother of three girls, one of whom has Down syndrome. She is also the cofounder of Keep Infants with Down Syndrome (http://keepinfantswithdownsyndrome.blogspot.com/)

This book is not only a memorable collection of stories about families responding to a variety of conditions affecting their children but also a great resource for parishes, pro-lifers, educators, health care professionals, parents, and virtually anyone whose life has been touched by a person with special needs. The book can be purchased at aspecialmotherisborn.blogspot.com/ as well as other sites such as Amazon.com and Barnes and Noble.

One thing I have learned over the years is that special needs are not limited to children at birth. Some of our children are affected by conditions or problems that can occur long after birth. But the truth remains the same: God is always with us.

With permission from Leticia, the following is my contribution to her book.

CHAPTER 15-THE HOSPITAL VISIT

I didn’t have a plan for this.

It was 1982 and I just stayed awake, crying and smoking five packs a day in my hospital bed after my daughter was born. The fact that Karen had Down syndrome was a shock but the news that, according to the cardiologist, she only had two weeks to two months to live because of an inoperable heart defect was unbearable.

At the time, I had a 5-year-old son and a 3-year-old daughter excitedly waiting for their new sister and a husband recovering from depression. I was sure we could all adjust to the Down syndrome but I couldn’t imagine any of us capable of watching our baby die. In desperation, I asked the nurses if they knew of anyone who had gone through the death of a child. No one knew of anyone like that but one nurse did suggest a co-worker who took in foster children. I couldn’t understand how that nurse could possibly help but, as I said, I was desperate.

Anna came in late one night and I poured my heart out to her. I admitted that I was afraid to get close to my baby because of the pain of losing her and I agonized about letting my other children get too attached to Karen. And, of course, I was worried about my husband’s depression spiraling out of control.

Anna told me that every time she gave up a foster child to adoption, it was like a little death to her because that child was gone, possibly forever. Then she told me something surprising. She told me that she could tell I was the kind of person who would automatically give my heart to my child. I remember thinking at the time that she had more faith in me than I had in myself.

Then she told me something I would never forget. Anna said that giving my heart to my child was a no-lose proposition. “If Karen dies, you will have the comfort of knowing that you gave her everything possible and, if she lives, you will have the comfort of knowing that you didn’t waste any time”, she said. Anna also told me to trust God.

Those words were like a healing balm because they were so true and just what I needed.

It turned out that the doctors were wrong and 3 weeks after Karen was born, we found out that her heart defect was indeed operable. Unfortunately, Karen died at 5 1/5 months from complications of pneumonia and just before her open-heart surgery. But her short, precious life did indeed prove the wisdom of Anna’s words.

Not long after Karen died, I went back to the hospital to thank Anna for her advice. But even though I had graduated from nursing school at that hospital and knew the nurses there, no one could remember Anna or even anyone like her.

I finally talked to the supervisor, an old friend who came to see me after Karen was born. She was positive that no one like Anna was there at the time but — and this made the hairs on both our necks stand up — she suggested that perhaps Anna was an angel.

Of course, we’ll never know for sure but Saint Ann is not only my namesake but also the mother of the Blessed Virgin herself. And I can certainly imagine Saint Ann speaking those same words of wisdom to one of her suffering children like me.

Notes:

1 “A Less Risky Down Syndrome Test Is Developed” by Andrew Pollack. New York Times. October 17, 2011. online at: http://www.nytimes.com/2011/10/18/business/sequenom-test-for-down-syndrome-raises-hopes-and-questions.html

2 “Self-perceptions from people with Down syndrome” by Brian G. Skotko, et al. American Journal of Medical Genetics. October 2011. onlinelibrary.wiley.com/doi/10.1002/ajmg.a.34235/full

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

Voices copyright © 1999-Present Women for Faith & Family. All rights reserved.

2009 Voices: A Nurse’s View of Ethics and Health Care Legislation

Voices Online Edition
Vol. XXIV, No. 3
Michaelmas 2009

Women for Faith & Family
Celebrating 25 years of service to the Church
1984-2009

A Nurse’s View of Ethics and Health Care Legislation
by Nancy Valko, RN

As a nurse for 40 years, I have long been very concerned about the direction our health system has been taking. Now, I am becoming truly frightened by the significant changes that government’s proposed health care reform would cause.

I’ve read much of HR 32001, the 1000+-page proposed health care reform bill currently being pushed by the Obama administration and I agree with the critics who worry about potential taxpayer-funded abortion, rationing of care and promotion of the “right to die”. Like them, I am also concerned about a massive governmental overhaul of our health care at an exorbitant financial as well as moral cost.

Much of the bill’s language is murky legalese that is hard to understand. Much of the language is vague enough to allow all sorts of interpretations — and consequences. Worse yet, efforts to insert limits on such issues as taxpayer-funded abortion-on- demand so far have been rebuffed — or concealed in various ways. Government officials who advocate the proposed health- care-reform legislation are furiously trying to allay the fears of the increasing number of citizens who oppose the bill — but we have only to look at the statements and philosophy of the people supporting this bill to recognize potential dangers. Here are some examples:

— Compassion and Choices (the newest name for the pro-euthanasia Hemlock Society) boasted that it “has worked tirelessly with supportive members of congress to include in proposed reform legislation a provision requiring Medicare to cover patient consultation with their doctors about end-of-life choice (section 1233 of House Bill 3200).”2

— On abortion, President Barack Obama not only said “I remain committed to protecting a woman’s right to choose” on the January 22, 2009 anniversary of Roe v. Wade, but he also moved to rescind the recently strengthened federal conscience-rights protections for doctors and nurses who object to participating in abortion.

— On rationing: Dr. Ezekiel Emanuel, President Obama’s health care advisor, wrote in the January 2009 issue of the British medical journal Lancet about using a “complete lives system” to allocate “scarce medical interventions”. He wrote that “When implemented, the complete lives system produces a priority curve on which individuals aged between roughly 15 and 40 years get the most substantial chance, whereas the youngest and oldest people get chances that are attenuated.”3 Dr. Emanuel wrote a 2005 article on the Terri Schiavo case, bemoaning the low percentage of people signing “living wills” and other advance directives and stated, “Cases such as these also introduce economic issues, as the costs of keeping people alive — especially in the ICU — are substantial.”4

END-OF-LIFE ISSUES A MAJOR CONCERN

Just recently, a judge in Montana, acting alone, declared assisted suicide legal, making Montana the third state with legalized assisted suicide.5 Last year, cancer patient Barbara Wagner received a letter from the state-run Oregon Health Plan that denied coverage for an expensive drug for her recurrent lung cancer, but agreed to cover drugs for assisted suicide as “palliative” or comfort care that would cost around $50.6 This past July, a New York nurse sued her hospital after she allegedly was pressured into participating in a late-term abortion.7

Around the country there are instances where judges refuse to allow the implementation of state laws mandating parental notification, women’s right to know information and abortion clinic safety regulations.

Unfortunately, those of us who try to be ethical health-care professionals cannot turn to the mainstream national organizations like the American Medical Association (AMA) and the American Nurses Association (ANA) for help. I’ve been particularly alarmed that the ANA, like Planned Parenthood, is so vocal in its support of the newly proposed health-care-reform legislation.

Like most nurses, I do not belong to the ANA. Though I was formerly a member of ANA, and tried to work for change, I withdrew my membership when the ANA opposed the ban on partial- birth abortion. Since then, the ANA has also opposed strengthened conscience clause protections8 and supported the “right to die” in the Terri Schiavo case.9

As a nurse, I believe that not participating in abortion is a moral and natural imperative, not a “choice”. And also as a nurse, I’ve seen the effects of the “right-to-die” movement on health-care providers and their education over the years. Personally, I have become sick of hearing that this or that patient “needs to die” when the patient or family chooses not to withdraw basic care or treatment. Unfortunately, there are a lot of medical people and prominent ethicists who don’t really believe in free choice when it comes to the “right to die” and who actually do think some patients are a drain on the health care system and society. Not surprisingly, many of them also support direct euthanasia.

President Obama said in an April interview, “The chronically ill and those toward the end of their lives are accounting for potentially 80 percent of the total health care bill out here.”10

The present context of the moral and ethical issues makes it particularly worrisome for the proposed health-care-reform legislation’s plan to mandate “end-of-life counseling”.

Mounting concern about what is really involved in the administration’s health care reform proposals has met with unexpected resistance. It’s been amazing to watch the throngs of people of all ages making their voices heard at town hall meetings. I’ve been especially impressed by the older citizens. It seems that seniors who may once have told their children that they didn’t want to ever be a burden have now awakened to the realization that soon government-appointed ethicists may decide when a person is “too burdensome” to be allowed to live.

Some of the criticism of HR 3200 now seems to be finding its mark. Dr. Emmanuel, who at first maintained that critics were taking quotes from his writings out of context, now says that his views have “evolved”, and that he no longer supports health care rationing.11 And Iowa Senator Chuck Grassley now says, regarding the upcoming Senate version of health care reform, “We dropped end-of-life provisions from consideration entirely because of the way they could be misinterpreted and implemented incorrectly.”12

These are hopeful developments — much, much more is necessary. The architects of what is now often termed “Obamacare” are still determined to win passage of a comprehensive health- care bill, and pro-abortion groups demand unlimited abortion coverage. Politicians’ continued reassurances are most often mere repackaging of bad ideas. Influential ethicists who support abortion and the “right to die” can be expected to resist opposition as vigorously as ever.

GOOD HEALTH-CARE REFORM

Of course, we must continue to be serious about making health care better, especially when it comes to the moral and ethical foundation of our health-care system. It can be done.

A few years ago, I was privileged to serve on a Catholic Medical Association task force on health-care reform. Many great ideas, such as health-savings accounts, ways to help the uninsured poor, and better conscience-rights protections, were developed and published in a 2004 report entitled “Health Care in America: A Catholic Proposal for Renewal”.13 Some of these ideas already have support in Congress.

In early August, the National Association of Pro-life Nurses (NAPN), of which I am a member, issued a statement of guiding principles necessary for any ethical health care reform (see sidebar).14

Many of our bishops have been addressing these crucial issues, as well. The US Conference of Catholic Bishops has a Health Care Reform web section to provide information, action alerts, statistics, statements and other resources (www.usccb.org/ healthcare/).

As I write this in August 2009, the future of HR 3200 and the government’s proposed reform of health care in general are still in dispute, as voting was delayed until after the August recess of the US Congress. The proposal may well be changed before a vote is taken. What is indisputable is that all citizens need to be informed and especially to be heard on this crucial issue that affects all of us.

POSITION STATEMENT ON HEALTH CARE LEGISLATION OF THE NATIONAL ASSOCIATION OF PRO-LIFE NURSES

Because proposed health-care legislation affects those of us in the nursing profession directly, the National Association of Pro-life Nurses issues the following guidelines to be included in any approved proposal.

• The bill must not include any mandate for abortion

• Abortion funding prohibitions must be included to reflect long-standing bans in place

• State laws regulating abortion must be upheld

• There must be protection of the conscience rights of health care workers, and

• Any plan adopted must include full prenatal and delivery care for all pregnancies.

In addition, we are opposed to mandating end-of-life consultation for anyone regardless of age or condition because of the message it sends that they are no longer of value to society. Such consults place pressure on the individual or guardian to opt for requests for measures to end their lives.

We believe those lives and ALL lives are valuable and to be respected and cared for to the best of our abilities. Care must be provided for any human being in need of care regardless of disability or level of function or dependence on others in accordance with the 1999 Supreme Court decision in the Olmstead v. L. C. Decision.

Adopted by the Board of Directors
August 3, 2009

WRITER’S NOTE:

On 25 Years of Women for Faith & Family

Twenty-five years ago, militant feminism seemed to be taking over our culture, and WFF started as a small beacon of light for Catholic women struggling to live their faith in an increasingly callous and dispiriting society. Today we are growing in numbers, stronger and better able to bring God’s message of hope and love to all through an organization of dedicated and devout women.

Congratulations to Women for Faith & Family for 25 great years! I am both proud and humbly inspired to be part of the WFF family!
NOTES

1 H.R. 3200 – America’s Affordable Health Choices Act of 2009, available online at: www.opencongress.org/bill/111-h3200/text or www.govtrack.us/congress/bill.xpd?bill=h111-3200.

2 “Anti-Choice Extremists Mislead On End-Of-Life Conversation Provision in Health Care Reform”. Compassion and Choices. Monday, July 27, 2009. Online: compassionandchoices.org/blog/?p=445.

3 “Principles for allocation of scarce medical interventions” by Govind Persad BS, Alan Werthheimer PhD, Ezekiel J Emanuel MD, The Lancet, Volume 373, Issue 9661, Pages 423-431, January 31, 2009. Available online: www.thelancet.com/journals/lancet/article/PIIS0140-6736(09)60137-9/fulltext.

4 “The Prognosis for Changes in End-Of-Life Care after the Schiavo Case” by Lindsay A. Hampson and Ezekiel J. Emanuel. Health Affairs, 24, no. 4 (2005): 972-975. Online: content.healthaffairs.org/cgi/content/full/24/4/972.

5 “Montana judge rejects stay of physician-assisted suicide ruling” by Kevin B. O’Reilly. AMNews. January 29, 2009. Online: www.ama-assn.org/amednews/2009/01/26/prsd0129.htm.

6 “Death Drugs Cause Uproar in Oregon: Terminally Ill Denied Drugs for Life, But Can Opt for Suicide”, by Susan Donaldson James. ABC News. August 6, 2008. Online: abcnews.go.com/Health/story?id=5517492&page=1.

7 “Nurse ‘Forced’ to Help Abort — Faith Objector Sues Mt. Sinai” by Kathianne Boniello. New York Post. July 26, 2009. Available online: www.nypost.com/seven/07262009/news/regionalnews/nurse_forced_to_help_abort_181426.htm.

8 “Bush-Era Provider Conscience Act Rules Under Scrutiny” by Cathryn Domrose. August 3, 2009. Nurse.com. Available online: news.nurse.com/article/20090803/NATIONAL01/108030001/-1/frontpage

9 American Nurses Association Statement on the Terri Schiavo Case. American Nurses Association. March 23, 2005. Available online: nursingworld.org/FunctionalMenuCategories/MediaResources/PressReleases/2005/pr03238523.aspx.

10 “Obama Says Grandmother’s Hip Replacement Raises Cost Questions” by Hans Nichols. April 29, 2009. Bloomberg Press. Available online at: www.bloomberg.com/apps/news?pid=20601070&sid=aGrKbfWkzTqc.

11 “Palin target renounces care rationing” by Jon Ward. Washington Times. August 14, 2009. Online: www.washtimes.com/news/2009/aug/14/white-house-adviser-backs-off-rationing/print/.

12 “Grassley: End-of-life care concerns, other concerns in House health care legislation”. Press release by Senator Chuck Grassley of Iowa, August 13, 2009. Online: grassley.senate.gov/news/Article.cfm?customel_dataPageID_1502=22465.

13 “Health Care in America: A Catholic Proposal for Renewal”. Statement of the Catholic Medical Association. September 2004. Available online at: http://cathmed.org/resources/position-papers/2004-statement-on-health-care-reform

14 Position Statement of the National Association of Pro-life Nurses on Health Care Legislation. August 3, 2009. Available online at: http://catholicexchange.com/position-statement-of-the-national-association-of-pro-life-nurses-on-health-care-legislation
Nancy Valko, a registered nurse from St. Louis, is president of Missouri Nurses for Life, a spokesperson for the National Association of Pro-Life Nurses and a Voices contributing editor.

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