Welcome!

Women for Faith and Family has published Voices magazine until 2014, the 30th anniversary of Women for Faith and Family.

I have been privileged to be a contributing editor for this magazine. It has been one of the best experiences of my life.

Women for Faith and Family was kind enough to start a webpage for me with my articles, interviews, etc. and I am preserving these articles on this website.

I have two blogsites, the one here is for my older articles from my Women for Faith and Family webpage titled “Nancy Valko” up to 2014 and one titled “Nancy Valko-A Nurse’s Perspective on Life, Healthcare and Ethics” at www.nancyvalko.com for blogs since June, 2015. Please feel free to visit both sites.

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Thank you for visiting!

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

A Nurse’s View of Ethics and Health Care Legislation -Michaelmas 2009

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


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://www.cathmed.org/assets/files/CMA%20Healthcare%20Task%20Force%20Statement%209.04%20Website.pdf

14 Position Statement of the National Association of Pro-life Nurses on Health Care Legislation. August 3, 2009. Available online at: www.nursesforlife.org/napnstatement.pdf.


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.

National Catholic Register 1996: Anencephaly Newest Frontier in Prenatal-Testing, Abortion Battle

Anencephaly Newest Frontier in Prenatal-Testing, Abortion Battle

Sunday, Nov 10, 1996 2:00 PM Comment

EVERY YEAR in the United States, approximately 800 babies are born with a birth defect known as anencephaly. It is a condition where, early in pregnancy, an error in development occurs which prevents the top portion of the brain and skull from forming correctly. Such babies have only a brain stem in place of the entire brain and lack part of the skull. Despite the severity of the defect, about half of such babies are born alive. However, almost all die shortly after birth, with only a rare few living months or years.

In years past, anencephaly was not detected until birth. However, with the advent of routine ultrasound and a newer blood test for the mother called AFP screening, the condition can often be detected during pregnancy.

Although abortion for unborn babies with terminal illness or disabilities has long been condemned by the Catholic Church, in the past few years some ethicists have developed a rationale by which pregnancies involving babies with anencephaly could be terminated by inducing labor as soon as the diagnosis is made.

Such terminations are called “early inductions of labor”rather than abortions by proponents, as anencephaly is usually not discovered until midway through the pregnancy. As justification, these ethicists have cited the possibility of difficulties during labor and delivery, the emotional trauma of the parents, and the apparent absence of mental development in babies who have the fatal condition. Reports of such terminations occurring at Catholic hospitals have prompted anger in the pro-life movement and calls for reexamination of the issue by other ethicists and doctors.

In an ironic twist, at the same time these ethicists were proposing ending anencephalic pregnancies prematurely, the Council for Ethical and Judicial Affairs of the American Medical Association (AMA) proposed the continuation of such pregnancies at the parents’ discretion so that the babies’ organs could be harvested shortly after birth and before death. Earlier this year, the council reluctantly withdrew its proposal after strong opposition from AMA members, legal experts, pro-lifers, and parents of infants with anencephaly. These critics argued that taking organs before death should remain legally and ethically forbidden.

Moral Principles

In a definitive statement issued Sept. 16, 1996 and titled “Moral Principles Concerning Infants with Anencephaly,”the National Conference of Catholic Bishops (NCCB) Committee on Doctrine condemns both practices. The NCCB statement reaffirms the Church’s position that “it can never be morally justified directly to cause the death of an innocent person no matter the age or condition of that person.”

Specifically, the Committee on Doctrine states: “The fact that the life of a child suffering from anencephaly will probably be brief cannot excuse direct causing death before ‘viability'(the ability of a baby to live outside the womb) or gravely endangering the child’s life after ‘viability’ as a result of the complications of prematurity.”

As the statement points out, while it is permitted to treat a life-threatening pathology of the mother even when this has the unintended side-effect of causing the death of her child, “[a]nencehpaly is not a pathology of the mother, but of the child, and terminating her pregnancy cannot be a treatment of a pathology she does not have.”

Because the child has an ultimately fatal condition, the statement says that babies with anencephaly “should be given the comfort and palliative care appropriate to all the dying” but that “extraordinary means to prolong life”can be foregone.

The statement also recognizes that while a wish to help other children by donating organs from babies with anencephaly is commendable, “this may never be permitted before the donor child is certainly dead.”

In the August 1996 issue of the Linacre Quarterly, Father Kevin O’Rourke, director of the Center for Health Care Ethics at St. Louis University, reversed his previously held opinion that premature delivery for unborn babies with anencephaly was justified. He now states that “because intervention in the pregnancy of an anencephalic infant results in a direct killing of an innocent human being, the only suitable, ethical opinion seems to be to allow the pregnancy to go to term, …”thus concurring with the NCCB Committee on Doctrine’s conclusions.

Prenatal Testing and Anencephaly

With the advent of prenatal testing, particularly AFP or “triple screen”testing of the mother’s blood, more and more parents are faced with the possibility of learning before birth that their baby has anencephaly or other birth defects. In 1994, the American College of Obstetricians and Gynecologists officially recommended that a “triple screen”test of the mother’s blood be offered to pregnant patients of all ages.

This implies a legal mandate to practicing physicians who cannot afford the liability of not offering such a test after a national recommendation has been made. This has resulted in “triple screen”testing becoming a common routine during pregnancy.

The “triple screen”test is done around 16-18 weeks into pregnancy when levels of certain substances produced by the baby can be detected in the mother’s blood. An abnormally high result suggests such conditions as anencephaly or spina bifida (an opening in the spine). An abnormally low result primarily suggests Down’s syndrome.

However, the rate of false-positive results is quite high and the vast majority of women with abnormal test results will be carrying perfectly healthy babies. Further testing is supposed to be recommended when an abnormal result is obtained, but there have been reports of mothers being offered the option of abortion after only the initial test.

Routine “triple screen”testing remains controversial. The anxiety engendered in pregnant women by abnormal but usually false-positive test results, the financial cost of testing all pregnant women as well as the costs of retests, and the implicit support for aborting so-called “defective” infants have spawned criticism of this policy. Supporters of the policy point to the potential cost savings of abortion over the costs of caring for infants with severe birth defects and the parents’ right to know all information currently available as justifying the policy.

As the 1987 Congregation for the Doctrine of the Faith’s document Donum Vitae makes clear, the Church’s position is that prenatal testing which does not pose disproportionate risks to the unborn child or mother is permitted if the intention is not to abort but rather to safeguard or heal the child.

Nancy Valko, R.N., is based in St. Louis, Mo.

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.)

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.

2012 Ethics and Medics: Is Catholics a “House Divided”?Ethics “

In the May 2012, Ethics and Medics, a publication of the National Catholic Bioethics Center (NCBC), published my article Is Catholic Ethics a “House Divided?”:

There is no question that traditional Catholic healthcare ethics is under fire, especially in the media. From nightly crime and medical dramas to the standard news stories of the day, Catholic ethics is routinely portrayed as
cruelly rigid, inscrutable, or even outright dangerous to public health. A case in point is the December 4, 2011, lead story for the CBS Sunday Morning show. The story, titled “The Catholic Church: A House Divided?,”focused onthe 2010 decision of Bishop Thomas Olmstead of Phoenix, Arizona, to remove the Catholic status of St.Joseph’sHospital and Medical Center in Phoenix, because of an abortionerformed there on an eleven-week-old unborn child whose mother was ill with life-threatening pulmonary hypertension.The chief medical officer at St.Joseph’sHospital stated in an interview that the abortion was medically necessary to save the mother’s life. Adding fuel to the media fire, the CBS show reported that Bishop Olmstead excommunicated Sister Margaret Mary McBride, RSM, administrator and member of the ethics committee at St. Joseph’s Hospital for approving the abortion.
The story portrayed the issue as one where abortion was the only medical solution. But was this true? CBS suggested that Sr. McBride, and American women religious in general, were being punished by a dogmatic and out-of-touch Catholic hierarchy. Again, was thistrue?  And what exactly were the details surrounding the excommunication of Sr. McBride? Was it, as the CBS show implied, an arbitrary exercise of power?
The Untold Story
The real story behind the St. Joseph’s Hospital abortion tragedy and its consequences is much more complicated than that depicted by the CBS show. Unfortunately, the average Catholic is unlikely to encounter clear and thoughtful explanations of the Church’s governing principles in cases such as this, especially if he or she depends primarily on the media for information. Thus it is not surprising that Catholic patients and families who are suddenly faced with ethical dilemmas find themselves

confused and troubled by differing opinions about what is the best course of action, even at Catholic hospitals. This is a grave problem that I have seen often during my forty-two years as a nurse.
In the case of the abortion at St. Joseph’s Hospital, not surprisingly, given media hostility toward the Catholic Church, quite a lot of information was left out of the CBS Sunday Morning report, that is, facts that would have
been helpful to future patients and families who will face similar decisions. Too often, Catholics find themselves on the defensive because they do not know the actual teaching of their own moral tradition. The Church’s prohibition against direct abortion makes both moral and practical
sense because it is rooted in natural moral law and in scientific fact.
In the case at St. Joseph’s Hospital, the Church’s prohibition against direct abortion was not a hard-hearted dogma designed to force the death of a mother, but rather it was a commitment to both lives involved. There is an
enormous difference between terminating the life of an unborn child (a direct abortion) and treating a serious or even life-threatening condition of the mother that may lead to the unfortunate but foreseeable death of
the unborn. The classic example of a pregnant woman with uterine cancer, where the diseased organ must be removed along with the unborn child, is justifiable under the principle of double effect. The object of the act is the
removal of an unhealthy organ. The death of the child is foreseen but not intended.
In the case at St. Joseph’s Hospital, there was no diseased organ to be removed, and the child, of course, was healthy. Although women with pulmonary hypertension are advised to avoid pregnancy because the risk of
pregnancy-related death is substantial (reported to be 30to 50 percent 1), tremendous advances have been made in treating pulmonary hypertension in pregnant and nonpregnant patients. In addition, although the media

rarely report it, abortion poses physical and emotional risks to even a healthy mother in the first trimester of pregnancy. Bishop Olmstead determined that the hospital’s medical staff and ethics committee had decided to perform an abortion rather than treat the woman’s disease.2
The CBS program ignored these facts. The other major controversy presented in the report was whether Bishop Olmstead had overstepped his bounds by revoking the Catholic status of the hospital and by  excommunicating Sr.McBride. Were these actions a sudden and rash decisionof an authoritarian monarch, as most secular media and
even some Catholic critics claimed? Hardly. There was along and complex history behind these events, a history that continues to show itself in Catholic Healthcare West’s recent decision to abandon its Catholic identity.
As Bishop Olmstead made clear in his December 2010 statement, he spent months discussing with officials of the hospital and Catholic Healthcare West not just this abortion but what the bishop determined to be a pattern
of behavior that violated the Ethical and Religious Directives for Catholic Health Care Services, the governing document for Catholic health care institutions. According to Bishop Olmstead’s, this behavior included administering contraceptives, contraceptive counseling, voluntary
sterilizations, and abortions in cases of rape, incest, and even for
the benefit of the mental health of the mother—a dubious medical claim. Bishop Olmstead expressed his reluctance to remove the Catholic status of the hospital and stated that “the Catholic faithful are free to seek care or to offer care at St. Joseph’s Hospital, but I cannot guarantee thatthe care provided will be in full accord with the teachingsof the Church.”3
Bishop Olmstead said that he had had discussions for years with Catholic Healthcare West, the parent company of St. Joseph’s Hospital, about resolving violations of the Ethical and Religious Directives but that CHW had refused to comply. Those directives recognize a bishop’s essential
responsibility over Catholic health care institutions:“As teacher, the diocesan bishop ensures the moral and religious identity of the health care ministry in whatever setting it is carried out in the diocese.”4
The CBS Sunday Morning show criticized Bishop Olmstead for excommunicating Sr. McBride, but in fact he privately informed her that she had incurred an excommunication latae sententiae, that is, that it
happened automatically at the procurement of the completed abortion. Canon 1398 states, “a person who procures a completed abortion incurs a
latae sententiae excommunication.” Of course, there are extenuating
circumstances, such as intention or coercion, that could mitigate the penalty of excommunication, but this is far from the liberal feminist cause célèbre that the CBS Sunday Morning show would have its viewers believe.
A Deeper Problem
As troubling as is the media criticism and lack of depth, it is the confusion spread by Catholic sources that is arguably the most damaging, for Catholics and non-Catholics alike. The United States Conference of
Catholic Bishops issued a thoughtful statement on the case, ignored, of course, by the media.5 But it was also ignored by prominent Catholic organizations and theologians.
The Catholic Health Association, claiming to include more than six hundred hospitals and 1,400 long-term care and other health facilities in all fifty states, issued a strong statement in support of the abortion and of the hospital.6 Marquette University professor and theologian M. Therese
Lysaught, hired by St. Joseph’s Hospital to provide an “independent” analysis, denied that the termination was a direct abortion.7 Such events lead many devout Catholics to scratch their heads. They wonder whom they can trust when it comes to making health care decisions in the light
of Catholic teaching.
The real-world consequences of such division within the Church are frightening. The American Civil Liberties Union, citing the abortion case at St. Joseph’s Hospital,already complained to federal health officials that “no hospital—religious or otherwise—should be prohibited from saving women’s lives and from following federal law.”8 The Obama administration’s February 2011 revision of a federal protection of conscience rights regulation has left both health care professionals and institutions vulnerable to litigation and coercion.
A consistent ethical standard of care is crucial for protecting patients as well as Catholic health care itself. Reliability builds trust, an indispensable component of good health care that appeals to both Catholics and non-
Catholics alike in this uncertain health care environment. At a time when hospitals are competing for patients,Catholic hospitals can stand out by offering both the best technology and the best standard of ethics.
Bishop Olmstead’s difficult decision to revoke the Catholic status of St. Joseph’s Hospital exposed the problem of Catholic institutions and ethicists who ignore or reinterpret many of the clear and definitive principles of the Ethical and Religious Directives to justify certain
practices. Generations have gratefully entrusted their confidence, respect, and donations to Catholic health care institutions in order to build up the wonderful system of care that we have. Catholic institutions must now prove themselves worthy of that trust.
Nancy Valko, RN, is a contributing editor for Voices, president
of Missouri Nurses for Life, and a spokesman for the National
Association of Pro-Life Nurses.
1
Scientific Leadership Council, “Birth Control and Hormonal Thera-
py in Pulmonary Arterial Hypertension,” Consensus statement,
2
Thomas J. Olmsted, “St. Joseph’s Hospital No Longer Catholic:
Statement of Bishop Thomas J. Olmsted,” December 21, 2010,
3
Ibid., 3.
4
U.S. Conference of Catholic Bishops,
Ethical and Religious Directives
for Catholic Health Care Services,
5th ed. (Washington, DC: USCCB,
2009), General Introduction.
5
USCCB Committee on Doctrine, “The Distinction between Direct
Abortion and Legitimate Medical Procedures,” June 23, 2010.
6
Catholic Health Association, “Catholic Health Association State
-ment regarding St. Joseph’s Hospital and Medical Center in
Phoenix,” December 22, 2010, http://chausa.org/newsdetail.
aspx?id=2147488971.
7
Jerry Filteau, “No Direct Abortion at Phoenix Hospital, Theologian
Says,”National Catholic Reporter, December 23, 2010, ncronline.
org/news/no-direct-abortion-phoenix-hospital-theologian-says.
8
Rob Stein, “Abortion Fight at Catholic Hospital Pushes ACLU
to Seek Federal Help,”Washington Post, December 22, 2010,
/AR2010122206219.ht

 

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