02-Article/MacDonald

Human Dignity in the

‘Vegetative’ State

By Richard M. Doerflinger

On Christmas Eve, 1999, the family of Patricia White Bull in

Albuquerque, New Mexico received an unexpected gift. After 16

years in a supposedly irreversible "vegetative state," Mrs. White

Bull began to speak.

"Don't do that," she blurted out when nurses were trying to fix

her nursing home bed. Then she started speaking her chil-

dren's names, catching up on family developments, and eating

foods she had not been able to swallow for many years. Her

mother says her sudden recovery is a Christmas miracle from

God (

The Washington Times, January 5, 2000, p. A3).

Mrs. White Bull's story is not unique. In recent years, a num-

ber of patients have unexpectedly recovered from the "vegeta-

tive" state - a dimly understood condition in which patients

have sleep/wake cycles, but do not seem aware of themselves

or their environment. And according to medical experts speak-

ing at a March 2004 international congress on the "vegetative

state" in Rome, medical science is only beginning to realize

how little is understood about this condition.

The term "persistent vegetative state" was coined in 1972.

Physicians said then that patients with this diagnosis had no

consciousness or sensation, and could not recover once they

had remained in this state for a certain number of months.

The latest findings contradict all this. It turns out that patients

diagnosed as being in a "vegetative" state may have significant

brain waves, and substantial parts of the upper brain may be

alive and functioning. This functioning may even change

depending on whether a friend or relative is speaking nearby.

The testimony of many families that their loved ones in this

state seem to know when they are present can no longer be

dismissed as simply wishful thinking. And medical experts are

no longer so confident that they can name a number of

months or years in this state that makes some degree of recov-

ery impossible.

On March 20, 2004, near the end of the Rome conference on

the "vegetative" state, Pope John Paul II delivered an important

speech in an audience with the attendees. This speech clarified

and reaffirmed our moral obligation to provide normal care to

these patients, including the food and fluids they need to sur-

vive. Here the Holy Father made several points:

1. No living human being ever descends to the status of a "veg-

etable" or an animal. "Even our brothers and sisters who find

themselves in the clinical condition of a 'vegetative state' retain

their human dignity in all its fullness," he said. "The loving

gaze of God the Father continues to fall upon them, acknowl-

edging them as his sons and daughters, especially in need of

help." Against a "quality of life" ethic that makes discriminato-

ry judgments about the worthiness of different people's lives,

the Church insists that "the value of a man's life cannot be

made subordinate to any judgment of its quality expressed by

other men."

2. Because this life has inherent dignity, regardless of its visible

"quality," it calls out to us for the normal care owed to all help-

less patients. In principle, food and fluids (even if medically

assisted, as in tube feeding) are part of that normal care. Such

feeding, he said, is "a

natural means of preserving life, not a

medical act." This means, among other things, that the key

question here is simply whether food and fluids effectively pro-

vide nourishment and preserve life, not whether they can

reverse the patient's illness. Even incurable patients have a

right to basic care.

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3. This judgment does not change when the "vegetative" state is

diagnosed as "persistent" or unlikely to change: "The evaluation

of probabilities, founded on waning hopes for recovery when the

vegetative state is prolonged beyond a year, cannot ethically justi-

fy the cessation or interruption of

minimal care for the patient,

including nutrition and hydration."

4. Deliberate withdrawal of food and fluids to produce a prema-

ture death can be a form of euthanasia, that is, unjust killing.

"Death by starvation or dehydration is, in fact, the only possible

outcome as a result of their withdrawal. In this sense it ends up

becoming, if done knowingly and willingly, true and proper

euthanasia by omission."

5. The Church's traditional teaching, that one is not obliged to

impose useless or excessively burdensome treatments on

patients, remains valid. The obligation to provide assisted feed-

ing lasts only as long as such feeding meets its goals of providing

nourishment and alleviating suffering. But to those who might

too easily withdraw such feeding as overly burdensome, the Holy

Father warns that "it is not possible to rule out

a priori that the

withdrawal of nutrition and hydration, as reported by authorita-

tive studies, is the source of considerable suffering for the sick

person." If a seemingly unresponsive patient might be able to

feel the burdens of tube feeding, he or she may also be able to

feel the suffering of being dehydrated to death.

6. We must not forget the needs of families caring for a loved

one in a "vegetative" state. The rest of us must not abandon

these families, but reach out to give them every possible assis-

tance so they will not face their burdens alone. Respite care,

financial support, the sympathetic cooperation of medical pro-

fessionals and volunteers, and psychological and spiritual com-

fort were among the kinds of help the Holy Father urges society

to provide.

The Pope's speech responds to a serious moral and legal prob-

lem that has divided families, ethical advisors, and courts in the

United States and elsewhere. For many years, "right-to-die"

groups have promoted the withdrawal of assisted feeding from

patients in a "vegetative" state. Sometimes they have admitted

that they see such patients as better off dead (or at least see

their families as better off if the patients are dead). Ethicist

Daniel Callahan warned in the

Hastings Center Report in

October 1983 that many of his colleagues favored such policies

not because of special burdens involved in such feeding, but

because "a denial of nutrition may in the long run become the

only effective way to make certain that a large number of biolog-

ically tenacious patients actually die." In some of the "tube feed-

ing" court cases that have divided families and sparked head-

lines, even some family members have declared that the patient

is essentially already dead - an "empty shell" with no human

dignity.

Church officials have warned against this trend in the past. In

1992, for example, the U.S. bishops' Committee for Pro-Life

Activities issued a resource paper titled "Nutrition and

Hydration: Moral and Pastoral Reflections," recommending a

strong presumption in favor of assisted feeding for patients diag-

nosed as being in the "persistent vegetative state." The paper

strongly opposed any removal of these means designed to has-

ten the patient's death from dehydration or starvation. It also

found that assisted feeding is generally not "extraordinary

means" - rather it is usually an effective way to sustain life that

does not impose grave burdens on patients. Similarly, a 1995

"Charter for Health Care Workers" issued by the Pontifical

Council for Pastoral Assistance to Health Care Workers stated:

"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."

By reaffirming these principles, the Holy Father is reminding us

that here, as on issues such as abortion, embryo research and

capital punishment, the Church's voice must be raised to insist

that every human being is a beloved child of God, that no one is

worthless or beyond our loving concern.

This does not mean that patients must accept tube feeding in

cases where they would see it as an unwarranted intrusion that

only increases their suffering. When discussing the burdens and

benefits of medical procedures, the Church has always recog-

nized that these judgments have a subjective element, and that

patients' own assessments are to be given great weight. In the

final analysis, as Pope Pius XII said in a 1952 address to the

medical community, "the doctor has no other rights or power

over the patient than those which the latter gives him."

At the same time, the obligation to respect human life in every

condition is addressed to all of us, including patients. Catholics

should beware of "advance directives" that reject assisted feeding

across the board; rather, we should seek out more carefully

worded documents that recognize the presumption in favor of

such care when it does not impose undue burdens on the

patient. Many state Catholic conferences have produced state-

ments on this issue, or even sample forms allowing Catholics to

specify their wishes in ways that reflect Catholic values and con-

form to any requirements of state law. Forms allowing the

patient to name a trusted proxy decision maker, to made deci-

sions when the patient can no longer do so, may be more help-

ful than a written declaration that tries to anticipate all future

medical situations.

Hospitals and physicians, for their part, should not be obliged to

comply with a request from patient or family that they believe is

immoral. The Ethical and Religious Directives for Catholic

Health Care Services state that a Catholic hospital "will not

honor an advance directive that is contrary to Catholic teaching,"

and adds: "If the advance directive conflicts with Catholic teach-

ing, an explanation should be provided as to why the directive

cannot be honored" (Directive 24).

When would such a directive conflict with Catholic teaching?

When it ignores the general obligation to support and care for

human life, and treats a condition like the "vegetative" state, in

and of itself, as a basis for withdrawing even the most basic

measures for preserving the patient's life and comfort. In an

extreme case, it may be obvious that the document is rejecting

assisted feeding simply to ensure that the patient in such a con-

dition dies as soon as possible.

Patients and families, like others involved in medical decisions,

need to understand that while specific medical procedures may

at times become useless or burdensome, this can never be said

of human persons themselves. Caring for loved ones who may

never be able to respond or thank us for our faithfulness could

be the ultimate test of our commitment to a culture of life.

Richard M. Doerflinger is Deputy Director of the Secretariat

for Pro-Life Activities, U.S. Conference of Catholic Bishops.

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Program Resources

Program Models

Celebrating Life: Holding Sacred the Human Spirit is a faith-based program directed toward

Pastoral Care Ministers and other professionals who minister to persons facing the end of life as well

as their loved ones. The presentation is designed in a "train the trainers" format in hopes that the

program will be replicated in parishes throughout the diocese. The objectives of the program are to

educate those who encounter end of life questions with answers that follow Catholic teaching, specif-

ically regarding nutrition and hydration, legal issues, and family concerns. For more information on

this program please contact the Bonnie Seaver, Director of Diocese of St. Augustine's Respect Life

Office at (904-262-3200 x.126) or Bill Tierney, Director of Catholic Charities (904-262-3200 x. 123).

Being With

is a charitable project which offers true compassion, wantedness, and love to those

faced with physical suffering in hospitals, nursing facilities, hospices, and homes. A Being With

vol-

unteer spends their time quietly, by the side of the suffering person, listening, smiling, singing, read-

ing, laughing, watching television, listening to a ballgame, or even just being present while a person

falls asleep. When appropriate, we sometimes hold a patient's hand, or caress someone's arm or

forehead. Sometimes we cry. Always we love. In the future, Being With

will train health care profes-

sionals and volunteers who wish to create a real environment of peace, purpose, and dignity among

those who suffer from chronic, serious, or terminal illnesses or injuries.

For more information about the Being With

project, visit their website at www.beingwith.net or

P.O. Box 1900, Snohomish, WA 98291, phone: 360-668-0333.

In 2002, the Arlington Diocese published an advanced medical directive which complies with the

laws of the Commonwealth of Virginia and the moral teachings of the Catholic Church. Contained in

a striking folder, the diocese provides a blank Advanced Directive and a Supplement to the Directive

which answers questions concerning the completion of the document, the terminology used in the

document, and the disposition of the document. The Office for Family Life of the Diocese distributes

these to individuals and parishes throughout the diocese. Directives are available postpaid for $3.00

each by check to: Family Life Office, 200 North Glebe Road, Suite 523, Arlington, VA 22203. For

more information, contact (703) 841-2550.

In Support of Life is a Power Point presentation developed to aid parishioners and medical profes-

sionals in the Church's teaching on end-of-life issues, exposing the threats to patients in this critical

time and discussing living wills. Contact the Diocese of Venice at 941/441-1101 or by email

[email protected].

Family Support: Parish communities can pull their resources together to support families giving

round-the-clock care to loved ones through volunteering their talents and providing outlets for a

family who may feel isolated from society. Parishes can offer not only spiritual counseling and pas-

toral aid, but also nights out for the primary care-givers, a friendship and most importantly

compassion.

Use All Souls Day, November 2

, as a focal liturgical time of year to educate your parish about the

importance of end-of-life issues. Have pamphlets available for parishioners to take as they leave

Mass. Some suggestions are: Hope for the Journey: Meaningful Support for the Terminally Ill and

The Gift of Life...in the Face of Death. Both are available from the USCCB by calling 866-582-0943.

The Nebraska Catholic Conference developed a pamphlet on Medical Treatment Decision Making

which you can order from them (402/477-7517), or download the text at

http://www.nebcathcon.org/press_releases.htm#Med.

Teaching Documents

Address to the Participants in the International Congress on "Life-

Sustaining Treatments and Vegetative State: Scientific Advances and

Ethical Dilemmas."

Pope John Paul II, March 20, 2004. Available at:

http://www

.vatican.va/holy_father/john_paul_ii/speeches/2004

/march/documents/hf_jp-ii_spe_20040320_congress-fiamc_en.html

The Dignity of Dying People. Pontifical Academy for Life, 1999.

Reprinted in Origins, Vol. 28, No. 41 ($2.95 to download).

The Gospel of Life. Pope John Paul II, 1995. Washington, D.C.: USCCB.

Also in Spanish ($7.95).

Declaration on Euthanasia. Sacred Congregation for the Doctrine of

the Faith, 1980. Available from Secretariat for Pro-Life Activities

(50 cents).

Guidelines for Legislation on Life-Sustaining Treatment.

NCCB Committee for Pro-Life Activities, 1984.

Secretariat for Pro-Life Activities (60 cents).

In the Service of Life. Pontifical Council for the Family, 1992.

Washington, D.C.: USCCB ($1.25).

Nutrition and Hydration: Moral and Pastoral Reflections.

NCCB Committee for Pro-Life Activities, 1992. Secretariat for

Pro-Life Activities ($1.95). Can also be found at

http://www

.usccb.org/prolife/issues/euthanas/nutindex.htm.

On the Christian Meaning of Human Suffering. Pope John Paul II,

1984. Washington, D.C.: USCCB ($3.95).

Statement on Euthanasia. NCCB Administrative Committee, 1991.

Secretariat for Pro-Life Activities ($7/100; $65/1,000).

A Catholic Guide to End-of-Life Decisions. Brighton, Mass.: The

National Catholic Bioethics Center, 1998 ($2; quantity discounts).

The Case against Assisted Suicide: For the Right to End-of-Life Care.

Kathleen Foley, M.D. and Herbert Hendin, M.D. (eds). Baltimore: The

Johns Hopkins University Press, 2002 ($49.95)

Euthanasia and Physician Assisted Suicide: Killing or Caring? Rev.

Michael Manning, M.D. Mahwah, N.J.: Paulist Press, 1998 ($8.95).

Handbook for Mortals: Guidance for People Facing Serious Illness.

Joanne Lynn, M.D. and Joan Harrold, M.D. New York: Oxford University

Press, 1999 ($25).

Last Rites: Assisted Suicide and Euthanasia Debated. Michael M.

Uhlmann (ed). Grand Rapids, Mich.: Wm. B. Eerdmans, 1998 ($35).

Lessons from the School of Suffering: A Young Priest with Cancer

Teaches us how to Live. Rev. Jim Willig and Tammy Bundy. Cincinnati,

Ohio: St. Anthony Messenger Press, 2001 ($6.95).

Life's Worth: The Case against Assisted Suicide. Arthur J. Dyck. Grand

Rapids, Mich.: Wm. B. Eerdmans Publishing Co., 2002 ($20.00).

Moral Issues in Catholic Health Care. Kevin T. McMahon, S.T.D. (ed.),

Wynnewood, Penn.: Saint Charles Borromeo Seminary, 2004.

Power over Pain: How to get the pain control you need. Eric M.

Chevlen, M.D. and Wesley J. Smith. Steubenville, Ohio: International

Task Force in Euthanasia, 2002 ($12.95).

Right to Die versus Sacredness of Life. Kalman J. Kaplan (ed.).

Amityville, N.Y.: Baywood Publishing Co., 2000 ($31.95).

Stations of the Cross for the Sick. Catalina Ryan McDonough.

Bloomington, Ind.: Our Sunday Visitor, Inc. ($4.95) May be ordered

from www

.osv.com.

When Death Is Sought: Assisted Suicide and Euthanasia in the

Medical Context. Report of the New York State Task Force on Life and

the Law (updated, 1999). Albany, NY: Health Education Services ($10).

Newsletters, Pamphlets, Reprints

A Catholic Guide to Medical Ethics: Catholic Principles in Clinical

Practice. Eugene F. Diamond, M.D., Palos Park, Illinois: The Linacre

Institute, 2001. Visit www

.cathmed.org.

Explaining Catholic Teaching: Euthanasia. Philip Robinson, London:

The Incorporated Catholic Truth Society & The Linacre Centre, 2003.

Visit www

.linacre.org.

The Gift of Life ...in the Face of Death. Secretariat for Pro-Life

Activities, 1998, pamphlet ($9/100; $80/ 1,000).

Hope for the Journey: Meaningful Support for the Terminally Ill.

Kathy Kalina, RN, CRNH. Secretariat for Pro-Life Activities, reprint, 2001

(#0101-KAL; 40 cents; 10-49 copies, 30 cents ea.; 50+ copies,

25 cents ea.).

Killing the Pain, Not the Patient: Palliative Care vs. Assisted Suicide.

Richard M. Doerflinger & Carlos Gomez, M.D. Secretariat for Pro-Life

Activities, reprint, 1998 (#9801-DOE; 40 cents; 10-49 copies, 30 cents

ea., 50+ copies, 25 cents ea).

In Support of Life: Comfort and Hope for the Dying. Brochure.

Massachusetts Catholic Conference (50 cents; quantity discounts).

Oregon's Assisted Suicide Experience: Safeguards Don't Work. Oregon

Right to Life. Salem, Ore.: Omega Publications (25 cents; quantity

discounts).

Audiovisual

Euthanasia: False Light. Steubenville, OH: Intl. Anti-Euthanasia Task

Force, 1995. Excellent discussion featuring physician, hospice nurse,

and three patients who survived "terminal illness" ($24.95).

Final Blessing. Washington, D.C.: USCCB, 1997. Thought-provoking

documentary on the spiritual dimensions of the lives of terminally ill

persons ($29.95).

Life at Risk: A Closer Look at Assisted Suicide. Twelve audiotapes of

1997 symposium of international experts at Catholic University of

America, co-sponsored by the NCCB, The Catholic University of America

and the Center for Jewish and Christian Values. Available from Donehey

& Associates ($50 per set in an album; individual tapes available at

$5 ea.).

Physician Assisted Suicide: Not Worth Living? Colorado Springs: Focus

on the Family/ Gospel Light ($20.00).

Internet

Papers presented at the International Congress on Life-Sustaining

Treatments and Vegetative State are available at www

.vegetativestate.org.

www

.acponline.org/journals/news/sept98/suicide.htm

(American College of Physicians)

www.ama-assn.org/ama/pub/category/8288.html

(American Medical Assoc. Code of Ethics)

www.cathmed.org (Catholic Medical Assn.)

www.healthinaging.org/public_education/pain

(American Geriatrics Society Foundation for Health in Aging)

www.iaetf.org (Intl. Anti-Euthanasia Task Force)

www.kofc.org/faith/cis/028/sacredlife.cfm

(Knights of Columbus Catholic Information Service)

www

.ncbcenter.org (Nat'1 Catholic Bioethics Center)

www

.ncpd.org (Nat'l Catholic Office for Persons with Disabilities)

www

.nrlc.org (Nat'l Right to Life Committee)

www

.nursesforlife.org (Nat'l Assn. of Pro-Life Nurses)

www

.seniorhealthcare.org (Senior Health Care Organization)

www

.stemcellresearch.org (Coalition of Americans for Research Ethics)

www

.usccb.org/prolife (USCCB Secretariat for Pro-Life Activities)