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 Because traditional ethics held that medical treatment could be withheld or withdrawn if it was futile or excessively burdensome, there were few objections to such a document and state legislatures started passing laws giving legal status to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long before “right to die” court cases involving people considered in PVS started to result in feeding tubes being withdrawn with the support and court testimony of some doctors and ethicists who maintained that PVS patients would never recover and that such patients would refuse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 Catholic Ethics a “House Divided”?

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 on the 2010 decision of Bishop Thomas Olmstead of Phoenix, Arizona, to remove the Catholic status of St.
Joseph’s Hospital and Medical Center in Phoenix, because of an abortion performed there on an eleven-week-old unborn child whose mother was ill with life-threatening pulmonary hypertension.The chief medical officer at St. Joseph’s Hospital 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 this true?  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 30 to 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 decision of 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 that the care provided will be in full accord with the teachings of 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

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.

“Non-heart beating organ donation” and the “vegetative state”

 

 

Editor’s Note: The following was presented by Dr. George Isajiw to the participants in the International Congress on “Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas”, held in Rome March 17-20, 2004. To read the text of the Holy Father’s address to the Congress, click here. Since this article was published in 2004, non-heartbeating organ donation (NHBD) has been renamed donation by ethicists and organ transplant organization as” death after cardiac or circulatory death (DCD)”  but the issues remain the same.

By George Isajiw, M.D. and Nancy Valko, RN

On May 23, 2003, the newspaper of the Archdiocese of St. Louis, the St. Louis Review, published an editorial stating that “the NHBD (non-heart beating organ donation) protocol is cruel and dangerous and does not meet standards of respect for human life” and called for an immediate moratorium on NHBD at all St. Louis hospitals.

Reaction was swift and critical. The St. Louis Post-Dispatch cited transplant surgeons and others who defended NHBD as a way to increase organ donations by taking organs from patients who “have little brain activity and are in a vegetative state with no hope of recovery and whose families decide to discontinue life support.1 Michael Panicola, vice president of ethics for the Catholic SSM Healthcare System, defended NHBD as “an opportunity for people to give the gift of life when they don’t meet brain death criteria.”

FACTS ABOUT NON-HEART BEATING ORGAN DONATION
For the past several years, a little-known but disturbing revolution has been occurring in organ donation. In the understandable but sometimes alarming zeal to obtain more organs, a new procedure called “non-heart-beating organ donation” has been quietly added to brain death organ donation in more and more hospitals in the United States and in other countries.2

Here, we are referring only to so-called “controlled NHBD protocols, although the “uncontrolled NHBD protocols, which are used for patients who have failed resuscitation efforts, have their own set of ethical problems which overlap with “controlled” NHBD, such as cannulation for preservation of organs before consent can be obtained.

While brain death organ donation means that the person is legally dead but still has a heartbeat when organs are harvested, the potential NHBD patient does not meet the brain death criteria but is termed “hopeless” or “vegetative” soon after suffering a devastating condition such as a severe stroke or trauma, and while still needing a ventilator to breathe. Because of the legal acceptance of the so-called “right to die”, families or other surrogates then agree to have the ventilator turned off, a “do not resuscitate” order is written, and when the patient’s breathing and heartbeat stops, the organs are removed.

In NHBD, the ventilator is usually stopped in an operating room while a doctor watches for up to one hour until the heartbeat and breathing stops. After an interval of usually just 2 to 5 minutes, the patient is declared dead and the transplant team takes over to remove the organs. A determination of brain death is considered unnecessary even though one of the inventors of the NHBD protocol, Dr. Michael DeVita has admitted, “the possibility of [brain function] recovery exists for at least 15 minutes”. Nonetheless, Dr. DeVita defends waiting only 2 minutes before harvesting the organs because he believes that the person is unconscious and, as he writes, “the 2-minute time span probably fits with the layperson’s conception of how death ought to be determined”.3

A recent article in the New England Journal of Medicine illustrates the disturbing lack of objective medical standards for withdrawal of ventilators.4 This article, published in September of 2003, admits that no study was done to “validate physicians’ predictions of patients, future functional status and cognitive function”, and the researchers did not ask doctors to ”justify their predictions of the likelihood of death or future function”.

With such subjective standards being used for withdrawal of ventilators, it should not be surprising that the potential NHBD patient will unexpectedly continue to breathe for longer than the usual one hour time limit required for the organ transplant to be successful. In these cases of failed NHBD, the transplant is then cancelled but, rather than resuming care, the patient is just returned to his or her room to eventually die without any treatment or further life support.

The recent case of Jason Childress illustrates the lethal problems with this non-treatment plan and the lack of objective medical or ethical standards for withdrawing ventilators.5

Jason is a young man who was severely brain-injured in a car accident and became the subject of a “right to die” case in which the judge ordered the removal of his ventilator 2 months after his accident. Against all predictions and because his tube feedings were not also stopped, Jason continued to breathe on his own and is now showing signs of improvement and receiving treatment. Ominously, the doctors, initial recommendation to withdraw the ventilator 2 days after his accident could have made him a prime candidate for NHBD since he would have possibly been too injured to breathe on his own that soon after his accident. The rush to declare patients “hopeless or “vegetative soon after illness or injury can thus deprive at least some patients of the chance of survival or even recovery.6

Some NHBD protocols do not even require that the donor be mentally impaired at all. For example, one ethicist wrote about the case of a fully conscious man with ALS who decided to check himself into a hospital, have his ventilator removed and donated his organs under NHBD criteria. The ethicist wrote, “An operating room nurse reported feeling that the procedure was ‘Kevorkian-like'”.7

CONCLUSION
Even more pressure to increase the use of NHBD is apparently coming in the US, even though the public has been kept largely uninformed about this new method of obtaining organs. For example, last November, an advisory committee to the US Health and Human Services department recommended that, in the future, all hospitals should establish policies and procedures to “manage and maximize” NHBD and also be required to “notify organ procurement organizations prior to the withdrawal of life support to a patient, so as to determine that patient’s potential for organ donation”8. Unknown to most of the public, hospitals are now already required to report every death to the local transplant organization even when tissue or organ donation is refused and, if enacted, this new proposal will put further pressure on medical personnel and distraught families.

Ironically, at the same time, new information is coming forward about these so-called “hopeless” patients who are considered potential NHBD candidates. A September 2003 article in the New York Times featured the work of Dr. Joseph T. Giacino and others with people who have had severe brain damage but who are now showing signs of “complex mental activity even after months or years with little sign of consciousness”.9 And, of course, there are many reported cases even in the media of brain-injured people who improve or even recover long after the doctors declared them hopeless.

Yet, even this may not be enough for some ethicists like Dr. Robert Truog, who recently proposed that “individuals who desire to donate their organs and who are either neurologically devastated or imminently dying should be allowed to donate their organs, without first being declared dead.”10 In other words, Dr. Truog wants to eliminate even the controversial NHBD protocol in favor of just taking organs from incapacitated or dying patients while they are obviously still alive.

Linking the so-called “right to die” with organ donation, as NHBD does, has truly opened a terrible Pandora’s box. While organ donation can be a gift of life and a worthy goal, we must not allow the deaths of some people to be manipulated to obtain organs for others. The position of Cardinal Justin Rigali, now Archbishop of Philadelphia, who was at that time the Archbishop of St. Louis and who asked for an immediate moratorium and re-evaluation of NHBD, is eminently sensible and should be replicated worldwide.

================================================================

NOTES

[1] “Archdiocese criticizes some organ retrievals” by Deborah L. Shelton, St. Louis Post-Dispatch, 6/10/03.

[2] “It is difficult to determine whether other countries such as Holland and Japan adopt a uniform defensible template in their practice of controlled NHBOD and information from the UK is also extremely limited as to the extent and nature of practice”. From “Non-heart beating organ donation: old procurement strategy” new ethical problems by M. D. Bell, Journal of Medical Ethics 2003; 29:176-181. Online at:

[3] “The Death Watch: Certifying Death Using Cardiac Criteria” by Michael A. DeVita, MD, University of Pittsburgh Medical Center, Pittsburgh, Pa. Prog. Transplant 11(1):58-66, 2001. © 2001 North American Transplant Coordinators Organization

[4] “Withdrawal of Mechanical Ventilation in Anticipation of Death in the Intensive Care Unit” by Deborah Cook, M.D., et al. New England Journal of Medicine, Volume 349:1123-1132, September 18, 2003, Number 12.

[5] “Jason Childress Still Breathing, Receives Proper Medical Care” by Steven Ertelt, LifeNews.com Editor, September 25, 2003. :

[6] “Ethical Implication of Non-Heart Beating Organ Donation” by Nancy Valko, RN. Voices magazine, Michaelmas 2002 Volume XVII, No. 3.

[7] A Primer for Health Care Ethics by Kevin O’Rourke, O.P., Georgetown University Press, 2000, p. 182

[8] US Department of Health and Human Services Advisory Committee on Organ Transplantation, Recommendations to the Secretary. November 2002. Recommendation 14

[9] “What if There Is Something Going On in There?” by Carl Zimmer. New York Times, 9/28/03

[10] “Role of brain death and the dead-donor rule in the ethics of organ transplantation” by Robert D. Truog, MD, FCCM; Walter M. Robinson, MD, MPH. Critical Care Medicine Journal, September 2003; 31(9):2391-2396

George Isajiw, M.D., is based in Washington, DC, and is Internal Medicine Consultant to the Linacre Institute of the Catholic Medical Association. He is also past president of the Catholic Medical Association, USA. His 2002 paper “Advance ‘Mis-Directives’: Euthanasia in Catholic Hospitals in the United States” appears here.

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

1996 Catholic Ethicists Draw Scrutiny-Prolifers worry about abuses at Church-sponsored health-care institutions

 

by Nancy Valko
National Catholic Register
April 28, 1996. p. 1


A woman who finds out that her unborn baby has a severe brain abnormality has the pregnancy terminated in the second trimester. A hospital goes to court for permission to remove a feeding tube from a brain-injured, homeless man.

Cases like these are so commonplace today that they barely raise an eyebrow. But they have rarely involved Catholic institutions. However, in a trend that worries the pro-life movement, some Church-supported health care institutions and Catholic ethicists have begun to challenge Church practice and teaching.

Abortion and Anencephaly

In a 1993 article, “Anencephaly and the Management of Pregnancy”, Sr. Jean deBlois, CSJ, senior associate for clinical ethics at The Catholic Health Association, cites anencephaly, a condition in which an unborn baby is missing major portions of the brain and skull, as a case where “the pregnancy may be terminated at any time”. Although Sr. deBlois admits that “there is no life-threatening maternal pathology”, she cites the possibility of difficulties during labor and delivery, the “emotional trauma” of the diagnosis on parents, and the lack of mental development in the baby as justification for “inducing labor to end the pregnancy”. Emplying the principles of proportionality and double effect, she reasons that “the resulting fetal death is indirect” and thus not a directly intended abortion. Sr. deBlois further states that because “human life involves more than simply biologic life” and infants with anencephaly lack “psychologic, social, and creative capacities”, such babies “can never acquire the quality of viability, properly understood” — despite the traditional definition of viability as the ability to live outside the womb. Thus, she says, the termination of pregnancy is allowable at any point in pregnancy.

The article was later included in the 1994 book A Primer for Health Care Ethics — Essays for a Pluralistic Society (deBlois, O’Rourke, and Norris) and there have been reports of such “terminations” being proposed and even occurring in Catholic hospitals, raising strong objections from both prolife and medical groups.

Dr. T. Murphy Goodwin, assistant professor of maternal-fetal medicine at the University of Southern California, writing in the March 1996 issue of Ethics and Medics, notes that “Even in Catholic institutions, early induction has been proposed as a humane option with the reasoning that the proportionate benefit to the fetus of living a few more weeks is outweighed by almost any burden on the mother and the family.” But, he counters, “there is rarely any physical risk to the mother of carrying through an anencephalic gestation compared to early induction (of labor)” “Early induction before viability ,” Dr. Goodwin wrote, “hastens the death of the child for the purpose of ending the parents’ grief.”

Dr. William Burke, a neurologist and associate professor of neurology at St. Louis University, concurs with Dr. Goodwin’s opinion and told the Register that “the diagnosis of anencephaly cannot be made with absolute certainty prior to birth and, even after birth, errors in diagnosis have been described in (medical) literature”. He also strongly objected to Sr. deBlois’ new definition of viability and says that “anencephalic infants have the same intrinsic value as any other human being, normal or disabled”. Dr. Burke said he was “outraged” when other doctors told him that such abortions had already occurred at a Catholic hospital.

Mary Kay Culp, president of Missouri Right to Life, says “I worry that arguments like Sr. deBlois’ will be used to undermine our efforts to protect the lives of all unborn babies with disabilities. This article gives tacit support to many pro-abortion arguments and I am deeply disturbed that this is coming from a Catholic source.”

Archbishop Justin Rigali of St. Louis, writing in the June 2, 1995 edition of the St. Louis Review, underlined the “extreme importance (of) is the witness of the Catholic health care community of the Archdiocese in not cooperating in any abortion of anencephalic fetuses or in the donation of the infants’ organs before they’re dead.”

Nutrition and Hydration: Agressive Care?

Prolifers were also stunned when the Jan. 21, 1996 edition of the St. Louis Post-Dispatch reported that St. Anthony’s Medical Center was going to court to ask permission to remove the feeding tube from Lucio Bretana, a 44-year-old homeless man, who sustained severe head injuries following a beating and had been a patient at the Catholic institution for six months. Because Mr. Bretana could not speak for himself and no relatives were found, a court-appointed guardian and lawyer, Robert Weis, was appointed. Mr. Weis opposed the removal of Mr. Bretana’s feeding tube based on Missouri law requiring “clear and convincing” evidence of a prior decision by a person that he or she would want food and water withdrawn in such a situation. The court ultimately agreed and Mr. Bretana was transferred to a non-Catholic long-term health facility where he is today.

After the court hearing, Thomas Hooyman, Ph.d., the Catholic ethicist for St. Anthony’s, said that the hospital “was comfortable” with the court’s decision despite his support of the petition for removal of food and water. Dr. Hooyman further stated that such a case showed the importance of having an advance directive which would allow removal of tube feedings.

Dr. Karen Pentella, chairperson of the Medical Ethics Committee of Christian Hospital Northeast/Northwest, criticized the court decision to continue feedings. In her letter to the editor of the St. Louis Post-Dispatch, she maintained that “Each human being has a right, and perhaps even a obligation, to die when life no longer has any quality or meaning.”

For pro-lifers, this calls to mind the similar Nancy Cruan case, which figured prominently in both recent federal circuit court decisions that favored a right to physician-assisted suicide. As the Ninth Circuit Court stated last month, “When Nancy Cruzan’s nutrition and hydration tube was removed, she did not die of an underlying disease. Rather, she was allowed to starve to death. In fact, Ms. Cruzan was not even terminally ill at the time, but had a life expectancy of 30 years… (t)he removal of her gastrostomy tube, which was clearly the precipitating cause of her death, is not considered to be the legal cause only because a judicial judgment has been made that removing the feeding tube is permissible.”

Fr. Kevin O’Rourke, director of the Center for Health Care Ethics in St. Louis, who supported the Cruzan parents’ efforts to remove their daughter’s feeding tube, has argued that removing feeding tubes in such a case is not intended to cause death but that death “may be anticipated”. He stated that the ethical standard of withdrawing care or treatment that is futile or burdensome is met in the Cruzan case because food and water would not restore Nancy Cruzan to “some degree of cognitive-affective function” and that “the Cruzan family is burdened by the condition of Nancy”. He further cited “persistent vegetative state (as) a psychic burden for a person”.

In a 1991 interview with Our Sunday Visitor magazine, Fr. O’Rourke said that the moral imperative to spoon-feed or provide food and water by tube would arise “if there is medical evidence that the injury is reversible — that she would be able to know, love, relate to people” and that the treatment would have a clear benefit for the patient. Fr. O’Rourke was referring to Christine Busalacchi, another young woman said to be in a “vegetative state”, but who was being retrained to eat by mouth. Fr. O’Rourke later testified in her court case that removal of her feeding tube was consistent with Catholic teaching. She died in March, 1993 after her feeding tube was removed.

More recently, in a March 1996 essay in the Center for Health Care Ethics’ newsletter, Father Patrick Norris, OP discussed the case of Michael Martin, a Michigan man who was severely brain-injured after a car-train accident, but who is conscious and able to “nod, smile and grip with his right hand”. The Michigan Supreme Court recently refused to allow Mr. Martin’s wife to order his feeding tube removed. Fr. Norris criticized the court’s decision because, he maintained, the court ignored “the best interests of the patient”. He theorizes that “the reluctance to discontinue treatment often originates from the emotional reluctance to remove artificial nutrition and hydration from a conscious patient, even though the removal of nutrition and hydration need not cause pain nor suffering during the dying process if proper care is given (e.g., proper mouth care)”. He also worries that “sentencing patients to medical limbo has already helped to generate calls for euthanasia.”

Thomas Marzen, J.D. and Dan Avila, J.D., of the National Legal Center for the Medically Dependent and Disabled, wrote in the University of Detroit Mercy Law Review, “the wordless language of Mr. Martin — conveyed by gesture and affect rather than by noun and verb — attests just as eloquently to the indomitable will to live.”

———————-

Food and Water: Some Excerpts From Catholic Sources

1. “By euthanasia is understood an action or an omission which of itself or by intention causes death, in order that all suffering may in this way be eliminated. Euthanasia’s terms of reference, therefore, are to be found in the intention of the will and in the methods used.” Declaration on Euthanasia. Prepared by the Sacred Congregation for the Doctrine of the Faith. May 5, 1980.

2. “Negative judgments about the ‘quality of life’ of unconscious or otherwise disabled patients have led some in our society to propose withholding nourishment precisely in order to end these patients’ lives. Society must take special care to protect against such discrimination. Laws dealing with medical treatment may have to take account of exceptional circumstances, when even means for providing nourishment may become too ineffective or burdensome to be obligatory. But such laws must establish clear safeguards against intentionally hastening the deaths of vulnerable patients by starvation or dehydration.” Statement on Uniform Right of the Terminally Ill Act. NCCB Committee for Pro-Life Activities. June, 1986.

3. “(I)t is our considered judgment that while legitimate Catholic moral debate continues, decisions about these (persistent vegetative state) patients should be guided by a presumption in favor of medically assisted nutrition and hydration… Such measures must not be withdrawn in order to cause death, but they may be withdrawn if they offer no reasonable hope of sustaining life or pose excessive risks or burdens”. “Nutrition and Hydration: Moral and Pastoral Reflections” U.S. bishops’ Pro-Life Committee. 1992.

4. “Some state Catholic conferences, individual bishops and the NCCB Committee on Pro-Life Activities have addressed the moral issues concerning medically assisted hydration and nutrition… These statements agree that hydration and nutrition are not morally obligatory either when they bring no comfort to a person who is imminently dying or when they cannot be assimilated by a person’s body. The NCCB Committee on Pro-life Activities report, in addition, points out the necessary distinctions between questions already resolved by the magisterium and those requiring further reflection, as, for example, the morality of withdrawing medically assisted hydration and nutrition from a person who is in the condition which is recognized by physicians as the ‘persistent vegetative state’… There should be a presumption in favor of providing nutrition and hydration to all patients, including patients who require medically assisted nutrition and hydration, as long as this is of sufficient benefit to outweigh the burdens involved to the patient.” Ethical and Religious Directives for Catholic Health Care Services, U.S.Bishops meeting. 1994.

5. “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.” Charter for Health Care Workers by the Pontifical Council for Assistance to Health Care Workers. Approved by the Congregation for the Doctrine of the Faith. Published 1995.

1996: NO BLANK BULLETS

No Blank Bullets

Commentary by Nancy Valko, RN

This was originally published in the January-March 1996 edition of the Patients Rights Council newsletter.

Commentary: No Blank Bullets: By Nancy Valko

Ready… aim… fire!

All the B-movie scenes I watched as a child flashed through my mind when I heard that a convicted murderer had been recently executed by firing squad. My visceral reaction was to cringe, instantly imagining the terror of being blindfolded and waiting for the bullets to hit. What I couldn’t imagine, though, were the feelings of being one of the men called to pick up and aim a piece of cold, hard steel at another human being. Would the man cope by pretending it was just another round of target practice? Would he try to remember the details of the murders and the tears of the victims’ families to muster the outrage that such crimes call for? What did he feel after the execution — sadness or satisfaction?

I was not surprised to later learn that one of the firing squad guns contained only blank bullets. In such circumstances, it is sensible to protect each executioner from the certain knowledge that he personally ended another’s life. In the more common lethal injection executions, the process is said to include at least two people and two buttons to start the process. Again, the procedure for legally terminating another life tries to protect those whom society asks to perform the awful task.

It is ironic, therefore, that society is considering the addition of yet another kind of execution to the legal list — assisted suicide — but this time without the blank bullets.

Few people would seriously consider legalizing relative– or family-assisted suicide. The inherent dangers of this type of private killing are much too obvious. Thus, the goal must be physician-assisted suicide or, more accurately, health care professional-assisted suicide, since nurses also must necessarily be involved when the assisted suicide occurs in a health facility or home health situation. We doctors and nurses are the ones society is now considering asking to perform the act of terminating lives, but unlike the firing squad or the lethal injection team, we will know and have to live with the certain knowledge that we caused death.

It is doubly ironic that when a convicted murderer tries to discourage efforts by lawyers to stop his or her execution, this is considered as a sign of stress or mental disorder, while a sick person’s willingness to die is considered an understandable and even courageous decision! How do we reconcile the two views that killing is the ultimate punishment for a convicted murderer and, at the same time, the ultimate blessing for an innocent dying or disabled person?

Both the American Medical Association and the American Nurses Association have recently issued strong statements against assisted suicide and euthanasia. While acknowledging the very real deficiencies too often found in care at the end of life, these organizations call for more education and access to help instead of the simple but dangerous option of killing terminally-ill or severely-disabled people or helping such people kill themselves. It is eminently logical that our concern for life should not be limited to just the curable.

And, although some polls show that a significant number of doctors and nurses, like the general public, say they could support assisted suicide in a hypothetical case, when faced with the realities and ramifications of legalizing the practice, most express deep concerns and fears regarding its implementation.

Society has long insisted that health care professionals adhere to the highest standards of ethics as a form of protection for society. The vulnerability of a sick person and the inability of society to monitor every health care decision or action are powerful motivators to enforce such standards. For thousands of years doctors (and nurses) have embraced the Hippocratic standard that “I will give no deadly medicine to any one, nor suggest any such counsel.” Should the bright line doctors and nurses themselves have drawn to separate killing from caring now be erased by legislators or judges?

As a nurse, I am willing to do anything for my patients — except kill them. In my work with the terminally ill, I have been struck by how rarely these people say something like, “I want to end my life.” And the few who do express such thoughts are visibly relieved when their concerns and fears are addressed and dealt with instead of finding support for the suicide option. I have yet to see such a patient go on to commit suicide.

This should not be surprising. Think about it. All of us have had at least fleeting thoughts of suicide in a time of crisis. Imagine how we would feel if we confided this to a close friend or relative who replied, “You’re right. I can’t see any other way out either.” Would we consider this reply as compassionate or, instead, desperately discouraging? The terminally-ill or disabled person is no different from the rest of us in this respect.

I often wonder if right-to-die supporters really expect us doctors and nurses to be able to assist the suicide of one patient and then go on to care for a similar patient who wants to live without this having an effect on our ethics or our empathy. Do they really want to risk more Jack Kevorkians setting their own standards of who should live and who should die?

The excuse that the only real issue is the patient’s choice would be cold comfort to us doctors and nurses when we have to go home and face the fact that we helped kill another human being or had to remain silently powerless while some of us legally participated. There will be no blank bullets then for us — or for society.

Nancy Valko, R.N., is an oncology nurse and the author of numerous articles on bioethical issues. She is also listed in the 1996-1997 edition of Who’s Who in American Nursing.

2001 Voices: Hard Sell on Stem Cells

Voices Online Edition
Michaelmas 2001, Volume XVI No. 3

Bioethics Watch:
Hard Sell on Stem Cells
by Nancy Valko, RN

“My life is more important than the life on a few cells in a petri dish”.

— Letter to the editor from a woman with a spinal cord injury, New York Times. 8/11/01.

“To use human embryos or fetuses as the object or instrument of experimentation constitutes a crime against their dignity as human beings having a right to the same respect that is due to the child already born and to every human person… ”

–Donum Vitae

(Instruction on Respect for Human Life In its Origin and on the Dignity of Procreation: Replies to Certain Questions of the Day, Sacred Congregation for the Doctrine of the Faith, 1987)

This summer, the entire country has been involved in an extraordinary discussion about the beginning of life and what that means. The topic is stem cell research on human embryos and the two statements above illustrate the stark differences and high stakes involved.

The origin of the current controversy began with the little-noticed Dickey amendment passed by Congress in 1995, which prohibited federal funding of research which involved destroying human embryos.

In 1999, however, the Clinton administration approved new National Institutes of Health (NIH) guidelines that would allow funding for research using stem cells obtained from excess embryos developed from in vitro fertilization (IVF, the so-called “test tube baby” technology).

Ironically, IVF long ago disproved the US Supreme Court Roe v. Wade decision’s contention that we do not know when life begins.

With IVF, the actual moment of conception can be observed as well as the development of the unique new human being over several days before the embryo is either destroyed, frozen or introduced into a womb.

In natural motherhood, the newly conceived embryo continues to grow during its ride down the fallopian tube instead of in a petri dish — for those several days before it reaches the womb and implants.

Although this simple scientific fact has long been known, the American College of Obstetrics and Gynecology redefined conception as “the implantation of the fertilized ovum” in 1965. This was a linguistic maneuver intended to separate artificial contraception, that prevented the new life from implanting in the womb, from abortion, which was illegal at that time.

The redefinition did not change the reality, however, and later consequences have included not only widespread ignorance about artificial contraception but also legal and social confusion over the status of the embryo conceived outside the mother by artificial reproduction.

The issues of surrogate motherhood, cloning, custody battles over frozen embryos, and the current controversy over destroying human embryos for their stem cells are all by-products of this scientifically inaccurate redefinition of conception.

Pope Paul VI’s 1968 encyclical Humanae Vitae is was prescient when it condemned the separation of physical union from reproduction and predicted dire consequences.

Science vs. Humanity

It was inevitable that IVF would lead to scientists experimenting on the “leftover” embryos. Just in the past few years, scientists have been able to separate cells from the early embryo before they become differentiated into brain, heart, muscle or any other of the 200+ kinds of cells in the human body. By manipulating these cells, known as embryonic stem (ES) cells, scientists hope that these cells can be developed into specific organs and tissues to cure a multitude of diseases and conditions. The ethical problem is that taking these cells causes the death of the embryo.

Despite the publicity, so far such research (now done by private research groups both in the US and other countries) has yet to yield such cures. And, despite massive public relations efforts to frame the ethical issue as “only” involving excess embryos from IVF that “would be discarded anyway”, scientists are now experimenting with stem cells from aborted babies and even creating embryos in the lab expressly for the purpose of “harvesting” their stem cells.

On the other hand, stem cells discovered in adults and other alternative sources have already resulted in new therapies and even cures. For example, umbilical cords obtained after delivery have proven to be a rich source of stem cells and have already restored the immune systems of several children that had been destroyed by cancer. Using these stem cells does not involve the destruction of life and thus presents no ethical problem. Such stem cells are usually referred to as adult stem cells.

Despite the fact that scientists are discovering that such adult stem cells, like embryonic stem cells, can be manipulated to grow into various other types of cells, supporters of destructive embryo research maintain that embryonic stem cells are superior because of a theoretical ability to develop into any kind of cell.

But even that theoretical ability seems to have some troubling drawbacks. Scientists do not yet know how to “switch off” the growth of such cells and this presents the potential for causing tumors and other problems instead of cures.

This was most recently demonstrated in March of this year when it was reported that cells from aborted babies injected into the brains of Parkinson’s patients resulted in devastating and permanent complications in a number of these patients while it did not cure any of them.

The Bush Decision

The new NIH guidelines allowing federal funding for the use of embryonic stem cells were immediately condemned by pro-life groups and others concerned with research ethics. The guidelines became a campaign issue in the last presidential election, with George W. Bush opposing federal funding of destructive embryo research and Al Gore supporting such funding.

Congressional hearings were held, with Michael J. Fox, Christopher Reeve and other famous people with currently incurable conditions weighing in with their support of using embryos to try to find cures for their diseases.

Even formerly staunch pro-life people — such as Senator Orrin Hatch — supported the research, claiming that embryos outside the womb do not have the same moral status as those within the womb. He maintained this position despite the congressional testimony of a couple who adopted two such “unwanted” embryos and now have 2 healthy sons.

Many other arguments were also tried: The victim embryo was referred to as a “pre-embryo”, blastocyst, or “potential human life” by many scientists and liberal commentators in an effort to portray the embryo as something less than human. The long-discredited argument that we may as well get some benefit from lives that would soon be terminated anyway was resurrected. And talk shows were inundated with calls from relatives of people with diabetes, Alzheimer’s disease, etc. who maintained that anyone with personal knowledge of the suffering of sick people would surely support such research.

As a last resort, newspaper editorials began to appear, defending the NIH guidelines as a way to “regulate” the ethics of private research groups in the US, which were already performing destructive embryo research using other sources of funding instead of government funding.

The controversy had reached fever pitch when, on August 9, President George W. Bush presented a “compromise” solution that eloquently defended the sanctity of life and prohibited federal funding for further destructive embryo research but allowed the use of already existing stem cell lines (stem cells from already destroyed embryos cultured to reproduce indefinitely) for research.

The US Conference of Catholic Bishops and many pro-life groups condemned the Bush decision as “immoral”, while some other pro-life groups cautiously endorsed the decision to prohibit federal funding involving further destruction of embryos. (The USCCB statement is available at http://www.nccbuscc.org/pro-life/issues/bioethic/fact801.htm).

A poll taken just after the Bush decision showed that more than 60% of those polled supported the Bush compromise, a reversal of previous polls showing up to 70% support for embryo research.

The good news is that the president’s speech announcing the decision seems to have resonated with the majority of the public against the destruction of human life. The bad news is that the decision allows funding for research already unethically performed. This provides a kind of amnesty for unethical research that might later be considered useful, and opens a whole Pandora’s box of legal maneuvering to find loopholes or expand the compromise on the already existing stem cell lines.

The embryonic stem cell debate is far from over, but it is becoming increasingly clear that the wise caveat that the end does not justify the means is no longer recognized as a universal principle in science.

Nancy Valko, RN, of St. Louis, is a contributing editor for Voices.