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,
"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 Because traditional ethics held that medical treatment could be withheld or withdrawn if it was futile or excessively burdensome, there were few objections to such a document and state legislatures started passing laws giving legal status to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long before "right to die" court cases involving people considered in PVS started to result in feeding tubes being withdrawn with the support and court testimony of some doctors and ethicists who maintained that PVS patients would never recover and that such patients would refuse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
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 www.ai.edu
2 "Do Not Resuscitate" by Arthur Caplan and Dominic Sisti, Philadelphia Inquirer, April, 1, 2004. Available online at: 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: 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: 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: www.usatoday.com/news/religion/2004-04-01-pope-usat_x.htm no longer available, 6/27/2005
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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