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

Voices Online Edition Vol. XIX No. 3 Michaelmas 2004

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

 

by Nancy Valko, RN

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

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

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

Pope John Paul II, March 20, 2004

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 Because traditional ethics held that medical treatment could be withheld or withdrawn if it was futile or excessively burdensome, there were few objections to such a document and state legislatures started passing laws giving legal status to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

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long before “right to die” court cases involving people considered in PVS started to result in feeding tubes being withdrawn with the support and court testimony of some doctors and ethicists who maintained that PVS patients would never recover and that such patients would refuse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

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

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

Pope’s Address on “Vegetative State” Surprises Many

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Do hospitals give up on severely impaired patients too soon?

By Sandy Caspersen And Nancy Valko

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But, please, let him be the last.

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

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

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

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

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

Here is the published exchange:

An Exchange on Life and Death

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Daniel Callahan replies:

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

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

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

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

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

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.

2008 Voices: Is Palliative Sedation Becoming Another Form of Euthanasia?

Voices Online Edition
Vol. XXIII, No. 3
Michaelmas 2008

Is Palliative Sedation Becoming Another Form of Euthanasia?
by Nancy Valko, RN

Annie (not her real name) was, as my children would put it, really “freaking out”. She was only in her 30s when it was discovered that she had rapidly advancing terminal cancer. Unfortunately, she had stopped taking her medication for her schizophrenia and her behavior deteriorated rapidly.

The decision was made to give her sedatives by intravenous drip for a short time and then stabilize her on her usual medication. Within a couple of days, the continuous sedative drip was slowly stopped and we were all relieved that Annie was now able to understand and deal with her terminal diagnosis.

This incident happened almost 20 years ago. Today, we have a much different scenario involving sedation and the end of life.

This year, Assemblywoman Patty Berg, a California lawmaker who has repeatedly tried to legalize assisted suicide, sponsored the “Right to Know End-of-Life Options Act” (AB 2747), a bill that would require doctors to discuss such options as “palliative sedation” and “voluntary stopping of eating and drinking” with terminally ill patients. Not surprisingly, Compassion and Choices (the former Hemlock Society) is an enthusiastic supporter of this measure.

PALLIATIVE/TERMINAL SEDATION

As I wrote in 2002,1 supporters define terminal sedation as the deliberate “termination of awareness” for “relief of intractable pain when specific pain relieving protocols or interventions are ineffective” and/or “relief of intractable emotional or spiritual anguish (existential suffering, psychological distress, emotional exhaustion).”2 Since such sedation continues until death, there is usually the withdrawal of all treatment, including even food and water, so that death occurs as quickly as possible. No matter how long it takes until death occurs, supporters of terminal sedation insist that the cause of death is the underlying illness rather than suppression of breathing, dehydration or the removal of essential drugs such as insulin or heart medications. It is unfortunate that supporters of terminal sedation now frequently change the term to the more benign-sounding “palliative sedation”. True palliative sedation such as Annie’s is not the same as this terminal sedation.

Paradoxically, despite the mainstream media’s fascination with “right-to-die” issues, I have only recently seen any mainstream media source even start to look at the issue of sedating people to death.

In March 2008, Time magazine published an article, “When is Sedation Really Euthanasia?”3, in which Kathleen Kingsbury, the author, readily admits “terminal sedation … often goes hand-in-hand with cutting off other medications or removing a patient’s feeding tubes” and that terminal sedation is beginning to supplant lethal overdoses in the Netherlands as the preferred death procedure. In the end, however, the author appears to agree with Dr. Ira Byock, a palliative care specialist and active promoter of terminal sedation, who maintains that such sedation is a legal, “end-of-life” option that is sometimes abused by being done “too early”, without the person’s consent or “to sidestep legal requirements to perform euthanasia”.

Miss Kingsbury also quotes Dr. Porter Storey, executive vice-president of the American Academy of Hospice and Palliative Medicine, as saying, “the option to sedate can be a tremendous liberation”, relieving patients of their “fear of dying or not getting adequate help at the end of life”. Dr. Storey maintains “Good doctors don’t intentionally shorten life.”4 Of course, a good doctor would not intentionally shorten life but sedating someone into unconsciousness and deliberately depriving him or her of food and water will in fact end life if it goes on long enough, regardless of the stated intention of the alleged good doctor.

CALIFORNIA’S BILL

While controversial public cases like Terri Schiavo’s involved removing food and water from so-called “vegetative” people without “living wills” or other documents, California’s “Right to Know End-of-Life Options Act”5 would allow a fully conscious, terminally ill person to intentionally stop eating and drinking while being sedated until death. However, causing or hastening death to relieve suffering is euthanasia no matter what procedure is being used and regardless of whether a person consents. And, of course, it is a very small step from allowing terminal sedation to actually allowing a faster lethal overdose.

The centerpiece of the California bill was a menu of “end-of-life” options including palliative (terminal) sedation and “voluntary stopping of eating and drinking” for people expected to die within a year. California health care providers who had ethical or medical objections to such palliative sedation were legally required to transfer the patient to a provider with no such scruples. Given the current “right-to-die” mindset in much of medical education, this does not bode well for developing future ethical health care providers when the bill stated “Every medical school in California is required to include end-of-life care issues in its curriculum and every physician in California is required to complete continuing education courses in end-of-life care.”

When pro-life, disability, and other groups of concerned citizens mounted a campaign against AB 2747, the sponsors of the bill started removing some parts of the bill to get it passed, but, as of August 2008, the bill has not passed and the opposition to it continues.

EUTHANASIA STRATEGY

As assisted suicide bills have regularly failed in state legislatures in the years since Oregon passed its assisted suicide law, euthanasia supporters have had to change tactics, although not their ultimate goal of choosing death as a constitutional right. The outreach to medical groups like hospice and palliative care organizations is particularly disturbing.

Euthanasia supporters have been successful in getting some medical and nursing groups to change their official positions from opposition to assisted suicide/euthanasia to neutrality on the issue. And now, almost all of the mainstream media accepts death by withdrawal of treatment as humane and legal for the severely brain-injured. It was just a matter of time before that vulnerable group of people expanded to include people with lesser disabilities and now even the fully conscious but terminally or “hopelessly” ill person.

But as everyone really knows, it is virtually impossible to starve and dehydrate to death painlessly. The idea of terminal sedation to make such a death possible thus becomes essential to the process.

Bills like California’s are not only incremental steps to the goal of legalizing euthanasia. They are also a crucial part of the effort of “right-to-die” groups to reeducate the public, especially doctors and nurses. This is why bills like California’s are so insidious. When an induced coma with self-starvation and dehydration is seen as proper medical treatment for anyone, the whole rationale of ethical health care is turned on its head.

When medically vulnerable people are given the option of a legal, doctor-assisted premature death, can we be surprised when we discover that none of us is permanently safe from the same fate?

Notes:

1 “Sedated to Death” by Nancy Valko, RN. Voices, Pentecost 2002. Available online at http://www.wf-f.org/02-2-terminalsedation. html.

2 “Total Sedation in End-of-Life Care: Clinical Considerations” by Perry Fine, MD. Journal of Hospice and Palliative Nursing, Vol. 3, Number 3, July-September, 2001.

3 “When Is Sedation Really Euthanasia?” by Kathleen Kingsbury. Time, March 21, 2008. Available online at: http://www.time.com/time/health/article/0,8599,1724911,00.html.

4 Ibid.

5 The amended text of AB 2747 is available online at: http://www.leginfo.ca.gov/pub/07-08/bill/asm/ab_2701-2750/ab_2747_bill_ 20080702_amended_ sen_v94.html.
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.
**Women for Faith & Family operates solely on your generous donations!

WFF is a registered 501(c)(3) non-profit organization. Donations are tax deductible.

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

2008 Voices: Was Zack Dunlap’s Recovery a Miracle?

Voices Online Edition
Vol. XXIII, No. 2
Pentecost 2008

Was Zack Dunlap’s Recovery a Miracle?

As Easter arrived, NBC’s news show Dateline breathlessly ran a story1 about a teenage boy declared “brain dead” who nevertheless began to recover just hours before his organs were scheduled to be harvested.

Last November, 21-year-old Zack Dunlap was declared dead 36 hours after flipping his 4-wheeler ATV. Official word of his death was even reported to Oklahoma authorities. The parents were told that their son was brain dead and they knew he had signed an organ donor card. After seeing a brain scan apparently showing no blood flow to his brain, the parents agreed to donate his organs.

However, Zack jerked his foot when a nurse ran a sharp object up the bottom of his foot. Although skeptical at first, soon even the doctors agreed that he was showing purposeful movement and the organ removal was cancelled. Five weeks later, Zack was transferred to the Jim Thorpe Rehabilitation Hospital in Oklahoma City.

Today, just four months later, it is almost impossible to tell that Zack ever had an accident, much less a catastrophic one. He speaks clearly, walks without assistance and is planning to go back to work. He now insists that that he heard a doctor say he was dead and that this “just made me mad inside”.

During the broadcast of this amazing story, much was made of Zack’s grandmother’s prayer for a miracle. Zack’s doctors continue to insist that no mistakes were made in Zack’s diagnosis of brain death and the parents agreed, saying “There’s no blame in a miracle.”

So have we indeed witnessed a replay of the Lazarus miracle? Probably not.

THE TRUTH BEHIND MOST MIRACLES

I fervently believe in the enormous power of prayer. I believe that God can and still does perform miracles but even when recovery doesn’t happen or is less than desired, prayer always helps.

As a nurse, I have seen many amazing recoveries over the years, ranging from the purely physical to the deeply spiritual. Intense prayer has accompanied many of these recoveries, but some, to my knowledge, have not. Of course, people like my paternal grandmother have made a habit of praying for anyone who most needed prayer, but I know from personal experience that there are no special words or prayers guaranteed to make a recovery happen. In the end, we always have to trust God.

But there is a larger issue: Are we conferring too much similar trust in the wisdom of the medical and ethical establishments?

It is ironic that true miracles such as the Resurrection and those verified at Lourdes are often dismissed as fake by the scientific establishment, but recoveries such as Zack’s are routinely seen as “miraculous” rather than as problems that need rigorous scrutiny or even opportunities to learn more.

Countless times over the years, I have seen doctors turn out to be wrong when they have given families a dire prognosis about their loved one. Honest mistakes do happen but with time and care, a surprising number of such patients survived and some even fully recovered. In the past, however, we weren’t in such a rush to withdraw treatment or donate organs. Today, a dire prognosis can be a death sentence.

In Zack’s case, barring a true miracle, it seems most likely that the doctors were well-intentioned but frighteningly wrong.

The diagnosis of brain death itself can be problematic and is still being debated even in Catholic circles.2 But while debate will continue over the validity of brain death, it seems obvious that we also need much more scrutiny of the ethics and practicality of applying that theory. At the very least, brain death is not a term to be used lightly.

For example, despite claims that brain death soon results in the end of all bodily function, we now have cases of pregnant “brain dead” women able to live for even months until their babies could be delivered. At the present time, the tests required to diagnose brain death can vary widely from hospital to hospital. When I personally served on an ethics committee at a local hospital years ago, I was appalled when one young doctor proposed that our hospital adopt the least strict brain death tests so that we could obtain more organs. This can have lethal repercussions even outside the context of organ donation.

For example, recently an elderly Minnesota woman’s family was told that she was brain dead after a massive stroke. No organ donation was planned and the family decided to take the 65-year-old woman home to die. Less than a month later, she was awake, talking and the doctors now say there is a possibility of a full recovery.3

And, as I have written before, there is now a big push for organ donation policies to include taking organs from people who are not brain dead, but whose families or guardians agree to withdraw life support and donate the organs when (or if) the heart stops within about an hour.4 This kind of organ donation is called non-heartbeating organ donation (NHBD) or donation after cardiac death (DCD). Currently, a California surgeon is fighting charges that he used drugs to hasten a disabled man’s death in order to obtain his organs using this kind of organ donation.5

MEDICAL MIRACLES

Scientists do agree on at least one thing. There’s a lot we don’t know about the human body, especially the brain. In the meantime, we have become used to the term “medical miracles” when new discoveries are made.

In the past, for example, we have had the development of CPR (cardiopulmonary resuscitation), which literally changed our legal definition of death from the cessation of heartbeat and breathing to the irreversible cessation of heartbeat and breathing. Countless lives that could have ended prematurely are now being saved. And just by not giving up, we have discovered that drowning victims can sometimes recover full brain function after being submerged in cold water for a prolonged period of time.

In recent years, careful observation and new technology is showing us that many people thought to be in a coma or the so-called “vegetative state” can indeed think and feel.6 Unfortunately, and despite numerous cases of people waking up even years after being diagnosed as comatose or “vegetative”, many doctors and ethicists continue to insist that such people are hopeless and better off dead.

Death penalty opponents hold that it is better for ten guilty men to live than for one innocent man to die. Ironically, that same rationale is seldom applied to such patients.

LESSONS TO BE LEARNED

In the past generation, we have seen a societal U-turn from “sanctity of life” to “quality of life”. Thousands of people sign “living wills” and other advance directives stating that they don’t want even simple measures such as food and water or antibiotics in the event that they do not have full mental function. Futility policies to allow the removal of basic medical care even against the patients’ or families’ wishes are becoming increasingly common, even in Catholic hospitals.7 More and more countries are legalizing assisted suicide and even outright euthanasia.

Terminal sedation, when used to make a person unconscious until he or she dies from dehydration, is now viewed by many as an ethical and legal substitute for euthanasia.8 Some ethicists, like Peter Singer of Princeton University,9 insist that human beings actually lack “personhood” when diagnosed as “vegetative” or severely brain-impaired and that caring for such people is a waste of health care resources.

In light of this new view of human worth, it is disappointing but not surprising that Zack’s dad, like many other well-meaning but misguided people, would say, “He lived life to the fullest. And laying in bed the rest of his life? That wasn’t an option.” This same rationale is used every day to deny basic care to even conscious people like the frail elderly, people with severe disabilities, patients with Alzheimer’s, etc. Society seems to be quickly forgetting that there is a very real difference between withdrawing futile and/or burdensome treatment from someone near death and actually causing or hastening the death of a vulnerable person.

In the final analysis, it seems that the story of Zack Dunlap’s recovery is less a story about a miracle than a cautionary tale about a close call. If Zack indeed had his organs harvested, this whole incident would be seen as just another successful case of organ donation. If Zack had survived with severe brain damage, we probably would have never heard about him at all.

While the media may treat Zack’s recovery as a feel-good human interest story, I believe that we should instead consider Zack’s case as both a wake-up call and an opportunity: We desperately need reform of some of our questionable medical and ethical policies as well as some of our own attitudes toward the sick and disabled. And we need to scientifically examine medical mysteries like Zack’s recovery so that possibly even more people can benefit from such medical marvels.

As far as miracles go, perhaps Zack Dunlap’s recovery was God’s way of reminding us that we still don’t know as much as we think we do and that we still need to take good care of each other.

Notes:

1 “‘Dead’ man recovering after ATV accident”, March 23, 2008. available online at: http://www.msnbc.msn.com/id/23768436/

2 “Vatican resuscitates issue of whether brain death means total death” by Carol Glatz. Catholic News Service. September 15, 2006. Available online at: http://www.catholicnews.com/data/stories/cns/0605285.htm.

3 “Lake Elmo woman makes miracle recovery from ‘brain dead’” by Allen Costantini, KARE 11 News. Feb 13, 2008. Available online at: http://www.kare11.com/news/news_article.aspx?storyid= 498009.

4 “Ethical Implications of Non-Heart-Beating Organ Donation” by Nancy Valko. Voices, Michaelmas 2002, Volume XVII, No. 3. Available online at: http://www.wf-f.org/02-3-OrganDonation.html.

5 “Surgeon Accused of Speeding a Death to Get Organs” by Jesse McKinley. New York Times. February 27. 2008. Available online at: http://www.nytimes.com/2008/02/27/us/27transplant.html?_r=1 &oref=slogin&ref=us&pagewanted=print.

6 “What if There Is Something Going On in There?” by Carl Zimmer. New York Times. September 28, 2003. Online at: http://www.nytimes.com/2003/09/28/magazine/28VEGETAT.html? pagewanted=print&position=.

7 “The Duty to Die: Scouting the Next Pro-Life Battlefield” by Deborah Sturm. insidecatholic.com. March 24, 2008. Available online at: insidecatholic.com/Joomla/index.php?option=com_content&task=view&id=3150&Itemid=48.

8 “When Is Sedation Really Euthanasia?” by Kathleen Kingsbury. Time. March 21, 2008. Available online at: http://www.time.com/ time/health/article/0,8599,1724911,00.html. See also my article “Sedated to Death? When ‘comfort care’ becomes dangerous” (written in 2002) at http://www.wf-f.org/02-2-terminalsedation.html.

9 “Taking Life” by Peter Singer. Excerpted from the book Practical Ethics, 2nd edition, Cambridge, 1993, pp. 175-217. Available online at: http://www.utilitarian.net/singer/by/1993—-.htm.
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.

**Women for Faith & Family operates solely on your generous donations!

WFF is a registered 501(c)(3) non-profit organization. Donations are tax deductible.

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

2007 Voices: Whatever Happened to Common Sense at the End of Life?

Voices Online Edition — Vol. XXII, No. 3
Michaelmas 2007

Bioethics Watch:

Whatever Happened to Common Sense at the End of Life?

by Nancy Valko, RN

Withdrawal of treatment, “living wills”, terminal sedation, assisted suicide, organ donation, etc. Currently, it’s virtually impossible to escape all the death talk in the media and elsewhere. For example, if you are admitted to a hospital for almost any reason, you or your relatives will be asked if you have or would like information about documents formalizing your “end-of-life” choices.

But despite all the hype, not every situation involving end-of- life issues has to involve wrestling with big ethical dilemmas. Many times, there are relatively simple considerations or strategies that actually used to be commonly employed until the introduction of the so-called “right to die”. Accurate information, common sense and a good understanding of ethical principles can cut through the “right-to-die” fog and make a person’s last stage of life as good as possible both for the person and his or her family.

Here are just four examples:

PROLONGING DEATH OR PROVIDING COMFORT?

I once cared for Mary (all names have been changed), an older woman who was near death with cancer. Her loving family took her to the doctor when she became confused and severely short of breath. An x-ray showed a fluid buildup near her lungs. The doctor inserted a long needle, aspirated the fluid and Mary immediately improved. However, the family was still worried. They asked me what they should do if the fluid built up again because they were afraid that this would prolong her death. I told them that the primary question now was comfort. If, for example, fluid did slowly build up again but Mary was comfortable, it could be burdensome to aspirate the fluid. However, if Mary did develop severe breathing problems that could not be controlled by medication, they might want to consider another aspiration since the goal was to make Mary as comfortable as possible during the short time she had left.

“Why, that’s just common sense!” the daughter exclaimed. Exactly!

Mary soon peacefully died at home with her family, never needing another medical intervention.

Families often suffer undue fear about prolonging death when a family member is dying and this can spoil what can be one of the most meaningful times in life.

After almost 40 years as a nurse, I have found that barring murder or other such situations, people generally die when they are ready to die even regardless of medical interventions. When death is imminent, the big priority should be comfort rather than whether a person might live a few hours or days longer.

WHAT IF AN ELDERLY PERSON DOESN’T WANT TREATMENT?

One of my friends was very worried about his elderly grandmother whose health seemed to be declining. She ate very little and said she was ready to die. Efforts to improve grandma’s nutrition didn’t work and she refused a feeding tube. My friend was finally able to persuade her to at least try a small feeding tube inserted through her nose.

Within a short time, there was a dramatic improvement in grandma’s mood and physical functioning. According to my friend, she was back to where she was 10 years before and the feeding tube was removed.

Too often, doctors and even families assume that an elderly person who doesn’t feel well is just dying of old age without exploring possibilities such as depression, poor nutrition, loneliness, treatable physical problems, etc. Sometimes the answer may be as simple as antidepressants or better nutrition. At the very least, it is worthwhile to explore the options. If an elderly person is truly dying, he or she will die but the family will have the comfort of knowing that they did what they could do.

For example, in a similar situation, another friend was caring for her frail, elderly mother with chronic lung and heart problems. Ann’s mom agreed to try a feeding tube but after a short initial improvement, her mom started going downhill again. Fluid began to build up and the feedings were stopped. Ann’s mom was given what little food and fluid she wanted and she eventually died of natural causes.

Particularly in the frail elderly, it can be difficult to determine whether or not a person is truly dying. And while we are never required to accept treatment that is medically futile or excessively burdensome to us, sometimes this can be hard to determine. Far too many times, feeding tubes and other interventions are automatically assumed to be futile and/or burdensome or reasonable options are presented as just a yes or no choice. But there is another alternative that is often ignored: trying an intervention with the option of stopping it if it truly is futile or burdensome.

There are no guarantees in life or death but even finding out that something doesn’t work can be a step forward.

SHOULDN’T WE BE ALLOW TO DIE?

Years ago, I received a phone call from a distraught fellow nurse living in California. Her sister, Rose, was comatose from complications of diabetes and had been in an intensive care unit for three days. Now the doctors were telling the family that Rose’s organs were failing and that she had no chance to survive. The doctors recommended that the ventilator and other treatments be stopped so that she could be “allowed to die”. My nurse friend was uncomfortable with this even though the rest of the family was ready to go along with the doctors.

As I told her, back when I was a new nurse in the late 1960s, we would sometimes see patients in the intensive care unit who seemed hopeless and we would speak to families about Do Not Resuscitate (DNR) orders. However, the one thing we didn’t do was to quickly recommend withdrawal of treatment. We gave people the gift of time and only recommended withdrawing treatment that clearly was not helping the person. Some patients did indeed eventually die but we were surprised and humbled when an unexpected number of these “hopeless” patients went on to recover, sometimes completely.

About six weeks after the initial phone call, my friend called back to tell me that the family decided not to withdraw treatment as the doctors recommended and that her sister not only defied the doctors’ prediction of certain death but was now back at work. I asked her what the doctors had to say about all this and she said the doctors termed Rose’s case “a miracle”.

“In other words” she noted wryly, “these docs unfortunately didn’t learn a thing.”

Cases like this are usually not miracles. Virtually every doctor and nurse has seen at least one surprising recovery and almost every day brings a new media report about yet another unexpected recovery. However when such considerations as cost, a poor prognosis or low quality of life intersect with the “right to die”, people can literally be forced to die prematurely. When doctors and ethicists decide to play God — even with good intentions — that arrogance can be fatal.

ISN’T IT COMPASSIONATE TO SUPPORT A PERSON’S RIGHT TO DIE?

When I first met Frank, I was puzzled. Frank was a terminally ill man who I was supposed to see for pain control but he didn’t seem to be in any physical pain at all. I talked to Frank’s wife Joan who tearfully confided to me that Frank was cleaning his gun collection when he asked her if she would still be able to live in their home if, in his words, “anything happened”.

Joan knew he was talking about shooting himself and even though she was horrified, she said she knew the right thing to say: “I will support any decision you make”. However, she later panicked and called the doctor to ask about pain control and that’s when I came in.

When I suggested to Joan that Frank’s real question might not be about their home but rather about whether his slow death might be too hard on both of them, she was stunned and said that this never occurred to her. She loved Frank and she wanted to care for him until the end.

Frank and Joan then finally had an open and long overdue discussion about their sorrow and fears. When I last saw them, they were holding hands and smiling. Frank died peacefully — and naturally — a few weeks later with his wife at his side.

As a situation like this shows, political correctness can actually be lethal itself. Unfortunately, the public is given the message that “tolerance” is a paramount value. From abortion to euthanasia, we are constantly told that opposition to these practices is callous and inhumane. We are told that we cannot impose our own narrow morality on people who do not agree.

Sadly, in the case of assisted suicide/euthanasia, it’s this tolerance that really can make the life or death difference. I’ve worked with some suicidal people over the years and I have found that ambivalence over whether or not to kill oneself is virtually routine. For example, one terminally ill woman I cared for said that she would take an overdose when she left the hospital. She didn’t seem sad or depressed and was actually quite animated and smiling. As she put it, she was just tired of being tired and feared that the future “was just all downhill”.

However, when we talked about her feelings, the ramifications of her decision and what help was available, she slowly changed her mind. But when she excitedly told her friends about her new decision to live, these friends tracked me down to give me a real tongue-lashing about not supporting this woman’s original choice.

The ultimate irony of the push to spread legalized assisted suicide beyond Oregon’s terrible law is that at the same time we naturally see suicide as a tragedy to be prevented, we are pressed to accept that suicide is a compassionate choice for the terminally ill and even others.

A TIME TO LIVE, A TIME TO DIE

When I worked as a hospice nurse years ago, our guiding principle was that we neither prolonged nor hastened dying. I totally supported this and I felt great satisfaction helping my patients and their relatives live as fully as possible until natural death. We nurses not only made sure that people were as physically comfortable as possible, we also helped with spiritual, emotional and practical concerns.

Unfortunately, the “right-to-die” enthusiasts have had way too much success in trying to convince both medical personnel and the public that choice in dying is really the ultimate principle. However, trying to micromanage death by such measures as withdrawal of basic treatment, terminal sedation, lethal overdoses, etc. profoundly changes the medical system, even for people who may recover or who may live with disabilities.

The “right to die” movement is really more about despair rather than hope or true justice. People deserve the best in health care and that includes the right to both excellent care and a natural lifespan.

It’s just common sense.

Addendum: There are many excellent Catholic resources for medical ethics information such as the Vatican’s Charter for Health Care Workers (available online at http://www.wf-f.org/healthcarecharter.html) and the Medicine and Morality page on the WFF web site.
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. She will speak on palliative care and other end-of-life issues October 28, 2007 at the Saint Louis Archdiocesan pro-life convention.
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