Bioethics.
Cahill, Lisa Sowle
In the past few years, appropriate care for the dying and stem cell research have been central to the bioethics literature. (1) Attention to
the dying process follows liberalized euthanasia policy (in Oregon, the
Netherlands, and Belgium) and a 2004 allocution of John Paul II mandating artificial nutrition and hydration of patients in a
"persistent vegetative state." The visibility of stem cell
research has been raised by advocacy for expanded U.S. government
funding. Stem cell research is of immediate concern primarily to the
privileged--yet commands a disproportionate share of bioethical
analysis. The ethics of death and dying affects everyone at some time.
The ethics of dying is the central focus of this article. But stem cell
research usefully highlights inequities in health resources that affect
the way many meet death, especially from preventable diseases.
Since 2001, the U.S. government has barred federal funding to
create embryos for research or to derive new cells lines from embryos,
while permitting use of stem cell lines already in existence. (2) Yet
private stem cell institutes and public-private ventures at the state
level are in the process of development. These would fund creation of
research embryos and stem cell research, and would solicit private
investment. The leader is California, where in 2004 voters passed a
referendum committing $300 million of taxpayers' money a year, for
a decade, to a state stem cell research institute, without any guarantee
that revenues would flow back into state programs. (3) In April 2005,
the U.S. National Academy of Sciences issued ethics guidelines for stem
cell research stating that creation of research embryos is acceptable,
including embryos made from combined human and animal gametes, as long
as they do not involve primates, and are not grown longer than 14 days.
(4) Yet, in March 2005, the 191 members of the U.N. General Assembly
backed a committee resolution calling nations to ban all human cloning
(including "therapeutic cloning" to obtain embryonic stem
cells). Supported by the U.S.A. and strongly contested by Belgium,
Britain, and China, the vote was split 84 to 34, with 37 abstentions.
(5)
Most critical analysis centers on the moral status of embryos. (6)
Theologians, especially Catholic theologians, tend to be
"conservative" in comparison to scientists and investors. Much
theological debate concerns whether the embryo has significant or even
full "personal" status at conception, or whether it has lesser
status until 14 days, the point at which "individuality" is
established, and survival, if implanted, is much more likely. Another
question is whether, even if an embryo is not a "person," it
still has status sufficient to prohibit the creation of research
embryos. (7) Some propose producing stem cells from entities similar to
embryos, but lacking potential to become human individuals. (8)
The exact status of embryos is unlikely to be settled very soon.
However, there could and should be agreement among theological
bioethicists to bring a justice lens to stem cell research and the
anticipated profits that largely motivate it.
Terminal illness and dying are of more acute global significance
than genetic innovations. Physician-assisted suicide has been legal in
Oregon since 1997. In 2002, the Netherlands and Belgium implemented
legislation permitting direct euthanasia, making those two countries a
testing ground for the social implications of normalizing medically
assisted killing. Like stem cell debates, these discussions assume the
availability of modern medicine. They are irrelevant for much of the
world's population. Yet the concerns of theology and ethics as they
pertain to health, illness, and death should be relevant to everyone.
Beyond euthanasia and artificial nutrition and hydration,
bioethics, especially theological bioethics, should pay attention to the
fact that a leading cause of death worldwide is poverty, which deprives
many of life-saving care considered routine in the more
"developed" countries. (9) If bioethicists in prosperous
cultures are to resolve issues of high global importance, they cannot
limit themselves to advanced medical supports. Access to resources is
integral to the ethics of death and dying, as well as of genetics.
Structural justice and solidarity receive more attention from
theologians than from philosophers; Catholic bioethicists have a rich
common good tradition on which to draw. Nevertheless, even Catholic
bioethical literature has presented the ethics of death and dying, and
of genetics and stem cell research, predominantly in terms of the rights
of individual patients and embryos in modern facilities. In her 2004
"Moral Notes," Maura Ryan urges that theological bioethics
attend to global perspectives. (10) A projected 2008 "Moral
Notes" contribution on AIDS will bring the health needs of the poor
into focus in a striking way. But questions of justice also lie below
the surface of debates about artificial nutrition and hydration,
euthanasia, and genetics.
John Paul II issued many counsels on care for the dying and on
respect for early life. He virtually always highlights economic
conditions that make the health and well-being of many precarious. As
President George W. Bush was considering national stem cell policy in
2001, it was widely reported that John Paul II warned him to protect
human embryos. Much less frequently noted--even by Catholic
commentators--was that the pope sounded that warning only after calling
on Bush, as a world leader, to propel "a revolution of opportunity,
in which all the world's peoples actively contribute to economic
prosperity and share in its fruits." Respect for "equal
dignity" and "human dignity" "demand policies aimed
at enabling all peoples to have access to the means required to improve
their lives." (11)
John Paul's address for the 2005 World Day of the Sick, held
in Cameroon, compares contemporary Africa to the man who was assisted by
Luke's Good Samaritan. Africans "are lying, as it were, on the
edge of the road, sick, injured, disabled, marginalized and
abandoned." Despite the continent's vibrant cultures, too many
suffer from "serious inadequacies in the health care sector"
rooted in global callousness and exploitation. (12) He cites AIDS,
malaria and tuberculosis, high-priced pharmaceuticals, war and conflict,
the arms trade, and wretched subsistence in refugee camps. Global social
issues and "bioethics" cannot easily be separated.
Artificial Nutrition and Hydration
For at least two decades, in the United States, the ethics of care for persons who are permanently comatose or in a "persistent
vegetative state" (PVS) has been controverted in court cases, and
by bishops' conferences and theologians. In 2005, the Florida case
of Terry Schiavo drove debate over what constitutes the best interests
of PVS patients and where current Catholic wisdom stands on appropriate
treatment. Within Catholicism there is a long-standing tradition that no
one is obligated to use "extraordinary" or disproportionate
means of life support, evaluated in terms of the condition of the
patient, the usefulness and burdensomeness of a treatment, and, to a
lesser degree, cost. The primary decision-maker is the patient or
family. (13) The most definitive statement to date on obligatory and
nonobligatory life supports is the Vatican Declaration on Euthanasia.
(14) It permits the refusal or withdrawal of treatment if "the
investment in instruments and personnel is disproportionate to the
results foreseen," or if they "impose on the patient strain or
suffering out of proportion with the benefits which he or she may
gain." Such a decision is not suicide or euthanasia, but
"acceptance of the human condition," avoidance of "a
medical procedure disproportionate to the results that can be
expected," or "a desire not to impose excessive expense on the
family or the community." (15) It is permissible to use necessary
dosages of drugs to relieve pain, even if so doing will shorten life.
In line with the Declaration, the current edition of the U.S.
bishops' Ethical and Religious Directives for Catholic Health Care
Services states that there should be a presumption in favor of providing
artificial nutrition and hydration (ANH) to sustain life "as long
as this is of sufficient benefit to outweigh the burdens involved to the
patient." (16) Whether it is truly a benefit to a PVS patient is
identified as "requiring further reflection." (17)
In March 2004, John Paul II delivered an "allocution"
removing ANH from the category "medical procedure," as
mentioned in the Declaration, thus excluding it from estimates of
proportionality. He calls ANH "a natural means of preserving life,
not a medical act." Therefore, "it should be considered, in
principle, ordinary and proportionate, and as such morally
obligatory." Withdrawal of ANH results in "death by starvation
or dehydration." (18) The pope clearly is concerned to protect
vulnerable persons from utilitarian devaluation. Every person has
"intrinsic value and personal dignity" and "a right to
basic health care," no matter what his or her "concrete
circumstances." (19)
Those who applaud the allocution reject any "quality of
life" judgments, and see preservation of life as always a benefit.
Richard Doerflinger regards "the decisive fact" underlined by
the speech to be "the patient's inherent dignity,"
requiring preservation of life even without consciousness to support
personal, interpersonal, or spiritual experiences and relationships.
(20) Peter Cataldo argues that there is a duty to preserve life by
nutrition, even if the capacity to strive for spiritual ends ceases, and
even if life is a lower good. (21) Mark Latkovic even denies a hierarchy
of spiritual goods over the good of life, since (following John Finnis
and Germain Grisez) both are "basic" goods. Hence, tube
feeding must be used unless it creates infections, the nutrients cannot
be assimilated by the patient, or the patient is about to die. (22)
A contrary line is that biological life, without consciousness,
does not furnish the opportunity to realize the interpersonal and
spiritual goods that are life's purpose, and is not worth
preserving to that individual. Many follow an argument made in 1974 by
Richard McCormick, who drew on a 1957 address of Plus XII to maintain
that ability to sustain biological life alone does not make a treatment
proportionate. (23) Just as Pius XII saw respirators to provide air as
potentially extraordinary for some, so tubes providing food are
analogous medical measures that might become disproportionate. In the
absence of "relational potential" (i.e., the ability to
participate meaningfully in human relationships) withdrawal is neither
"suffocation" nor "starvation," but the removal of a
technology that does not serve the patient's total welfare.
Nigel Biggar distinguishes merely biological from
"biographical" life. (24) Belgian theologians Tom Meulenbergs
and Paul Schotsmans argue that medicine averts death so that
"patients might continue to pursue material, moral and spiritual
values in some fashion that transcends physical life." (25) While
physical life is a real and true good in its own right, and not only
because it is instrumental to "higher" purposes, it is also a
limited good. (26) This means that quality of life may factor into
decisions about the obligation to preserve life. Jason Eberl sees
maintaining permanently unconscious patients by ANH as a type of
"useless torture." Due to the unity of human nature and
according to Aquinas, human ends must be pursued in light of the
integration of body, intellect, and will, not physical existence only.
(27) The overall condition and prospects of the patient constitute the
criterion of care.
Kevin O'Rourke calls into question several premises underlying
the 2004 papal allocution. (28) First is that widespread and published
medical evidence need not be given serious consideration, while medical
hypotheses of those promoting ANH are taken for granted. The likelihood
of diagnostic errors or of recovery, or that withdrawal of ANH always
causes suffering, is unsubstantiated and contradicts published
scientific evidence. The assumption that removal of ANH is tantamount to
"death by starvation" (thus Eugene Diamond (29) implies
wrongly that "the moral object of a human act is determined by the
physical result of the action." It circumvents the central issue:
whether ANH can be considered "a burden," "useless,"
or "disproportionate."
A group convened by the Canadian Catholic Bioethics Institute
(CCBI) (30) reflects the impasse on this issue. It agrees that there is
no absolute obligation to use ANH, since it has negative effects and few
benefits for some patients, especially the flail elderly. Besides
inability to assimilate the fluids and consequent bloating, effects
include mental agitation, irritation, infection, bowel perforation,
diarrhea, cramping, nausea, vomiting, blockage and leaking of the tube.
(31) However, the "key question" of whether ANH can be truly a
benefit for an unconscious patient, in the absence of these physical
problems, was identified but not resolved. Theologians arguing that ANH
is not beneficial for such patients do not deny that they have worth in
themselves, have dignity, and are owed respect. The question is not
whether such patients have rights or deserve care, but what kind of
treatment genuinely respects their dignity.
The Schiavo Case
The debate over ANH was galvanized in the U.S.A. in March 2005.
Theresa (Terri) Schindler Schiavo was 41 years old, had been in PVS for
15 years, and was receiving care in a Florida hospice. After review by
20 judges in nine courts, and six U.S. Supreme Court decisions not to
intervene, feeding tubes were removed at the decision of Schiavo's
husband, Michael Schiavo, and over the long-standing and vehement
objections of her parents, Robert and Mary Schindler. As her death
approached, Catholics, including bishops and Vatican representatives,
hurled accusations of "murder" at Michael Schiavo, the courts,
and participating medical personnel. After her death, family members
continued to wrangle over funeral arrangements.
Many impugn the motives to withdraw ANH. Edward Furton calls the
Schiavo outcome a "successful effort to kill this woman simply
because she was disabled." (32) Robert P. George advises us not to
"kid ourselves" that Michael Schiavo considered his wife
anything but a "burden." (33) Yet others believe "this
zeal to protect life has turned biological life into an idol." (34)
Substantively, the Schiavo debate has not moved the question much
past John Paul II's allocution. The issue remains the determination
of the best interests (35) of persons who by reasonable medical
standards have virtually no potential to regain consciousness. Despite
assertions that patient interests demand indefinitely prolonged ANH, few
competent persons are rushing to sign advance directives stipulating
such measures for themselves. In fact, the Florida bishops held up the
Schiavo case to advise drawing up directives, but did not instruct the
faithful to call for ANH when envisioning PVS. (36)
The Schiavo case does accentuate the problem of defining who is the
primary determiner of best interests in cases of uncertainty or
conflict. Advance directives can assist, but are not a panacea.
Designated proxies are a more flexible option. It is most imperative to
provide optimum pastoral support to those facing stressful life-or-death
decisions, so to resolve hostility and conflict.
Another angle of debate sharpened by the Schiavo case is the
authority of the papal allocution. Some maintain it subverts Roman
Catholic tradition and so lacks authority, others that it develops a new
tradition and is authoritative, and still others that it can be
accommodated within the longstanding tradition of permitting withdrawal
of ANH if interpreted cautiously. In the first category are those
depreciating the weight of the allocution due to its genre, absence of
authoritative repetition, and lack of coherence with the prior consensus
that relationships and spirituality define life's meaning.
Commenting specifically on the Schiavo case, and reflecting a
significant slice of the reactions to John Paul II's 2004 talk,
John Paris offers that it and the court case must be interpreted in the
light of a 400-year tradition on extraordinary or disproportionate
means. (37) O'Rourke points out that one well-established criterion
of the authority of a papal teaching, especially an allocution
("the least authoritative form of papal teaching"), is
repetition. The views put forth in March 2004 were not subsequently
reinforced by the pope, despite the fact that he gave further addresses
on health, illness, and health care. Nor have they been reinforced or
enforced by the Vatican or by the U.S. bishops, or been widely
implemented in Catholic health care facilities. (38)
A second viewpoint is that the allocution departs from prior
teaching, yet is quite consistent with emerging teaching, which the
allocution furthers and solidifies. Some approve and others disapprove
of this shift. Furton sees a number of documents since 1981 as preparing
for a presumption in favor of food and water as part of ordinary care.
(39) Shannon and Walter seem convinced, though with evident dismay. They
identify a novel "deontological" method of stipulating duties
with no regard for consequences that "undercuts the traditional
burden-benefit method and risks imposing great hardship on patients and
families at a time of great crisis." (40) A consequence has been
the virtual restriction of the extraordinary-ordinary distinction to
cases of imminent death; if death is not imminent (as in the Schiavo
case), then life must be prolonged. Shannon and Walter cite Evangelium
vitae, as well as a 1981 document of the Pontifical Council Cor Unum (Questions of Ethics Regarding the Fatally Ill and the Dying), a 1986
statement of the Committee on Pro-Life Activities of the National
Conference of Catholic Bishops, a 1987 statement of the New Jersey
Catholic Conference, and even the Religious and Ethical Directives,
since the latter establishes a "presumption" in favor of ANH
for "all patients." In any event, Shannon and Walter argue,
any widespread attempted implementation of such a policy in Catholic
health facilities would be a disaster. (41)
A third group--of a more "conservative" bent--proposes a
hermeneutic of cautious and strictly limited appropriation. Weight can
be placed on the pope's use of the term "in principle" to
qualify or specify the obligation to view ANH as "ordinary or
proportionate." Mark Repenshek and John Paul Slosar construe this
phrase to mean that "all other things being equal," feeding
tubes must be inserted for unconscious patients, but that this
obligation is not exceptionless and does not hold if disproportionate
"in the actual circumstances" of a given individual's
life. (42)
The CCBI statement notes that the pope's phrase "in
principle" does not mean "absolute," that every patient
has dignity, and that ANH need not be used if it is "overly
burdensome, costly or otherwise complicated." (43) John Berkman
sees the obligation as relatively strong, but not absolute. (44)
Philosopher Jorge Garcia concurs that the tradition, including this
recent development, does not demand ANH in every case, although it puts
the emphasis on sustaining life in case of doubt. He commends a
"middle position" in which ANH might sometimes be declined.
(45)
Scott McConnaha discusses a 1998 address of John Paul II to U.S.
bishops, "Building a Culture of Life. (46) Here the pope
differentiates "taking away the ordinary means of preserving life
such as feeding, hydration and normal medical care" from
"medical procedures that may be burdensome, dangerous or
disproportionate to the expected outcome." ANH should not be
omitted intentionally to cause death, and "the presumption should
be in favor of providing medically assisted nutrition and hydration to
all patients who need them." (47) While this statement foreshadows
the pope's 2004 characterization of ANH as "ordinary
care" and not a "medical" means, it more closely
resembles the Directives in establishing a "presumption" in
favor of use, and not a strict requirement. It is this nonabsolute bias
that some interpreters of the 2004 allocution have sought to retain by
stressing that its wording requires ANH "in principle," which
can be read to imply "not necessarily in all cases."
Beyond individual quality of life, justice is relevant. Dan
O'Brien, John Paul Slosar, and Anthony R. Tersigni applaud the
pope's repudiation of "utilitarian pessimism" about the
severely incapacitated. Yet they agree with O'Rourke that ANH is a
medical procedure, and that, in any event, "extraordinary
means" are not restricted to "medical" means. They
continue: "It could be argued that considerations of distributive
justice, responsible stewardship, and the common good would require
dedicating our health-care resources first to rectifying some of the
fundamental inequities in the current structure of access to health care
in this country ]and others], before dedicating any resources to
'awakening centers' that may or may not have any impact on
outcomes." (48)
The contentious point remains whether a presumption amounts to an
absolute duty or a conditioned duty, how narrowly conditioned, and
whether either a strictly conditioned or an absolute duty has been
incorporated into magisterial teaching at a high enough level of
authority, and with enough clarity and consistency, to constitute a
genuine, or even irreversible, shift in the meaning of end-of-life care.
While a more restrictive interpretation has been developing over the
past two and a half decades, this interpretation is not yet definitive
and universal. In addition to ambiguity of wording in official
documents, pluralism persists both in moral-theological interpretation
and--equally if not more importantly--in health care practice, where one
even finds a practical bias toward allowing ANH to be declined as not in
the best interests of certain patients. The intrusion of a
"new" competitor subtradition should not be underestimated.
Yet the consensus, justified by diverse strategies, is against strict
interpretation. The challenge is to bring these strands together around
compassionate care, rather than exploiting differences to fuel divisive
church politics.
An egregious insistence on ANH in virtually every case may be
intended to protect vulnerable persons from utilitarian cost-benefit
calculations regarding the care appropriate for them. In reality, it is
likely to enshrine inflexible regimes of "treatment" that few
people would choose for themselves, that contradict best interests and
humane care of the ill and dying, and that turn a blind eye to the real
and immediate health needs of the many who cannot access even basic and
useful care. It also distracts attention from holistic pastoral care for
families. Leo Pessini terms procedures that extend the dying process
uselessly "disthanasia," and describes Brazilian legislation
intended to protect the ability to refuse treatment and receive humane
care. (49) Lack of flexible options to evade terminal imprisonment by
medical technologies foments activism for euthanasia and
physician-assisted suicide. Hospice care, palliative care, and
euthanasia are the subjects of the next section.
Euthanasia and Palliative Care
Compared with ANH, there is much less pluralism in theological
bioethics about direct killing. The received consensus is that
euthanasia and physician-assisted suicide (PAS) are not acceptable,
especially as formal social policy. Faith communities and humanistic
medicine should seek expert and adequate pain relief, spiritual care,
and social support for all who face chronic illness or death. (50) These
forms of care are a matter of social justice as well as of personal
respect. Andrew Lustig demonstrates that common good, solidarity,
justice, rights,
and a preferential option for the poor define the context of John
Paul II's rejection of euthanasia. (51)
Euthanasia and PAS correspond to baffling human dilemmas and the
genuine ambiguity of cultural and philosophical estimates of death.
Marciano Vidal reflects that the experience of death is always of the
death of the "other" and necessarily remains an enigma.
Ethical appropriation of death consists in an attitude toward life,
acceptance of life's nondefinitive character, and trust in a power
beyond life. (52) Christians must live within the dilemmas of mortality,
offering company and fidelity to those ground down by illnesses with no
medical solution. (53)
Successful initiatives to legalize euthanasia in Oregon, the
Netherlands, and Belgium have faced virtually unanimous opposition by
churches. Yet characterizations of euthanasia and PAS as
"murder," a violation of "the sanctity of life," and
"intrinsically evil acts" have not deterred advocates who see
no real alternatives that meet people's needs at life's end.
In fact, rhetoric about a "culture of death" can polarize public opinion so that religious messages against euthanasia are
marginalized in "liberal" culture as ideological opposition to
compassionate care. (54)
In 1997, Oregon's Death with Dignity Act approved
physician-assisted suicide, but not euthanasia. In 2001, the Dutch
Parliament changed the penal code to allow both euthanasia and
physician-assisted suicide, effective the next year. In 2002 the Belgian
Parliament's House of Representatives voted to legalize euthanasia.
(It did not address PAS; suicide is not illegal in Belgium.) The Dutch
debate on euthanasia is over two decades old; legal recognition merely
formalizes accepted medical practice that had been technically against
the law. (55)
According to the European Association for Palliative Care (EAPC),
such care is scarce across Europe and available mostly to cancer
patients. (56) Although euthanasia is common practice in the
Netherlands, the Dutch are less familiar with options such as "do
not resuscitate" orders, and the withdrawal of
"extraordinary" means. In Belgium, by contrast, the euthanasia
discussion developed in tandem with public and professional attention to
the availability of palliative care, and the process of developing
regulation of euthanasia raised the profile of palliative care
significantly. (57)
The EAPC Ethics Task Force accepts individual choices for
euthanasia or PAS. Yet it notes several dangers that follow
legalization. These include euthanasia to avoid distressing treatment in
"the modern medical system," pressure on vulnerable persons,
the devaluation of palliative care, widening categories of candidates
for euthanasia, (58) an increase in the incidence of voluntary and
involuntary "medicalized killing," and crises of conscience
for individual healthcare professionals. The Task Force views the
mainstreaming of palliative care as one of the most important deterrents
to legalized euthanasia and PAS. (59)
The American College of Physicians-American Society of Internal
Medicine (ACP-ASIM) shares these reservations about expanded legal
access to PAS. "A broad right to physician-assisted suicide could
undermine efforts to marshal the needed resources, and the will, to
ensure humane and dignified care for all persons facing terminal illness
or severe disability." (60)
Euthanasia and PAS have been repudiated by many religious groups,
especially the Catholic Church. (61) Yet a joint statement of Dutch
Protestants was less emphatic than the Catholic bishops on the absolute
unacceptability of euthanasia or suicide in any form. The Protestants
maintain that the changed law goes "a step too far," lacking
adequate protections for the disabled and minors. (62) Religious groups
unanimously champion the cause of better and more available palliative
care. John Paul II calls for expert and specialized pain relief,
especially when "proportionate and effective treatment is no longer
possible." (63)
The task for theological bioethics is not simply to make the
abstract case that direct killing of the innocent is always wrong, or
that the principle of double effect precludes directly intending their
deaths. To say that life is a gift does not erase human responsibility
and the need to lay conditions for the gift's use or
relinquishment. (64) Christian support for the ill and dying must
communicate concretely that "the human senses of dependence,
remorse, and hope meet a God who can be trusted, even in the midst of
suffering and dying." (65) The Declaration on Euthanasia portrays a
request for euthanasia as "an anguished plea for help and
love." (66) The Reformed theologian Allen Verhey does not find an
effective response to PAS or euthanasia in prohibitions, but in "a
powerful and creative word of grace," such as hospice. (67)
Theological bioethics should focus on social conditions and health care
that promote an environment where the very ill and dying can live out
their remaining days with appropriate medical attention, without pain,
with dignity and companionship, and without excessive financial burdens
on themselves or families.
Palliative care and hospice are grossly underutilized in the United
States, even though professional and religious nonprofit organizations
advocate them. (68) In late 2005, separate reports by the Hastings
Center and the President's Council on Bioethics agreed that care
for elderly and dying patients must be targeted for reform. An excessive
medical and legal focus on individuals, lack of access to hospice until
late in the dying process, lack of support for families and for
cooperative decision-making, inadequate long-term care, and dwindling
numbers of care-givers, all contribute to dismal end-of-life prospects.
(69) According to the ACP-ASIM, "Our societal emphasis on
'cure' and the medical emphasis on intervention have sometimes
been at the expense of good end-of-life care. We have been slow to
embrace the practice and principles of hospice, and dissemination of
state-of-the-art palliative care, especially pain control techniques,
has been incomplete." (70)
Suffering
Intractable suffering that grinds into body and spirit contributes
to the cry for PAS. Suffering can torment and dissolve coherent agency
and deface relationships through which a person clings to a niche in the
world. Equally terrifying is the inexorable slide into the self-loss of
Alzheimer's. (71) Although we try to prevent, alleviate, or
transmute suffering, it sometimes cannot be controlled; it must be
accepted yet always resisted. (72)
Roger Burggraeve forbids us to glorify or exaggerate the spiritual
potential of suffering: "in physical and psychosomatic suffering
... the 'being delivered and chained to one's own being'
... is experienced as violence: I feel myself gripped and overwhelmed by
the 'other'; I become, as it were, crushed in myself,
paralysed and reduced to a thing." (73) Suffering is excessive,
unbearable, and "filthy," evil, a "downward spiral"
that inspires fear and embodies it. (74) Suffering is a consequence of
humanity's sin, is an undergoing of evil, is not caused by God, and
is always terrible, even if the love of Christ encourages us to meet it
with solidarity and hope. (75) The ethical response to suffering is not
easy; there is no "solution" except "existing close to
the other in his or her extreme vulnerability ... and in
'bearing' the other." (76) Jorge Garcia believes the
battle "is difficult to exaggerate," and cites the Catechism
of the Catholic Church, John Paul II, and Benedict XVI in favor of a
"preferential option for the sick." (77) Some theologians
invoke the Christian ars moriendi tradition to prepare for death; others
counsel uniting one's sufferings with Christ. (78) Yet the
cultivation of virtues cannot ultimately insure the self against
unpredictable and excessive distress. Practices of social, pastoral, and
liturgical support should bind those alienated and isolated by suffering
into communities of compassion, care, and belonging. (79)
Palliative Sedation
The main reason why the very ill or dying suffer is lack of
palliative care. However, in a very few cases even the best expertise
fails to relieve the excruciating ravages of illness. (80) Catholic
tradition has long recognized the permissibility of administering
painkillers, including morphine at very high doses, to induce
unconsciousness, at least for periods. (81) Any action directly intended
to cause death can, in theory, be strictly differentiated from actions
intended to relieve suffering, even if foreseeably shortening life, for
example, through respiratory depression.
Experience, however, introduces a note of ambiguity into
assessments of human intentionality in the complex and tragic sphere of
terminal suffering. "Sometimes the effects of our action are too
'close,' morally speaking, to be told apart." (82) One
woman describes her role as surrogate decision-maker for her husband,
dying from bone cancer that had metatasized to the brain. "'At
doses of 4 to 6 milligrams, my husband tossed and turned and his
breathing was ragged. I asked for 10 milligrams and he began to choke. I
asked the nurse to push the morphine pump to 30 milligrams and my
husband died, no longer struggling, within two hours.'" On the
face of it, this case fits neatly under double effect as an intention to
do whatever necessary to subdue the loved one's agony, accepting
that the almost certain price is a shortening of
life--"foreseen" but not "desired." The wife's
self-examination, however, belies any simple verdict. "'Did I
kill him? I don't know. Did I push the morphine pump up to warp
speed to relieve his suffering or mine? I don't know.'"
(83)
Similar ambiguity can arise when "mercy-killing"
(euthanasia) is contemplated, or "extraordinary" means are
withdrawn. Margaret Farley remembers a young man dying of AIDS who
realizes "it is time to concede," and refuses further
life-saving technologies. "Without erasing the difference between
his form of letting go and a more active taking of his life, is it
nonetheless possible that all the elements of religious acceptance could
have been incorporated into one or the other?" (84) When a
treatment is withdrawn, anticipating that death will follow immediately,
a similar analytic quandary surfaces. Is it possible to dissociate the
agent's intention completely from the causation of death,
particularly if death is also to be seen, in the words of the
Declaration on Euthanasia, as "acceptance of the human
condition"? Tangled together are the patient's best interests,
needs of family members and caregivers, and the
"undesirability" of death, held in tandem with an acceptance
that death is appropriate for this person at this time.
These factors beset the ethics of what is sometimes called
"terminal sedation" or "palliative sedation." (85)
When pain and discomfort are extreme and persistent, unconsciousness is
induced as a last resort, the relative immediacy of death is accepted,
and ANH are typically not administered. The option of palliative
sedation is one way to head off euthanasia, since it ensures that pain
and related suffering can be avoided without causing death. It is
important that all other routes have been explored. Muriel Gillick, an
American doctor, comments that studies from the Netherlands show that
about half of physicians studied have used terminal sedation to avoid
suffering at the end of life, usually when death is expected to be
imminent. Of these, 36% said they intended relief of symptoms not death,
17% said they did intend death, and 47% acknowledged both aims. (86)
The challenge to moral analysis derives from the fact that human
intentionality and motives are often mixed. The ostensible incisiveness
and clarity of double effect help stave off the kind of
medically-sponsored expansion of killing that may already be occurring
in the Netherlands. But human realities are often less clear than some
uses of the principle suggest, and simplistic "condemnations"
and "justifications" may not do them justice. The distinction
of intentions regarding moral acts is surely intelligible, relevant, and
important. But intentionality is not in every case clear-cut, and cannot
bear the whole weight of the moral status of an act.
Theological bioethics should not approve the legalization of PAS or
euthanasia. Nigel Biggar argues that, even if rare instances can be
justified, legalization is dangerous. (87) Theologians and churches
should strenuously advocate for palliative care and the right to refuse
treatment, including ANH. Yet the case against euthanasia may be
undermined rather than aided by an analytic framework that is not honest
about complexities attending decisions taken on the far edge of life and
in extremis.
Compassionate Care and Exclusion
Most people fail to gain access to appropriate medical and
palliative care at the end of life. The ethos of modern medicine is
geared toward advanced technologies and away from accepting death.
Moreover, many cannot access care, due to income, race, ethnicity, age,
disability, and global location. Within disadvanaged groups, women more
frequently suffer exclusion.
Health care exclusion already has been widely identified as a
problem, both domestically and internationally. (88) Exclusion has acute
consequences for those at the end of life. Inequalities can deprive
people of opportunities "to continue with satisfactory social
relationships and resolve social difficulties as they die." (89) In
the U.S.A, nonwhite and poorly educated people more frequently die in
the hospital than at home, as most Americans prefer, because, lacking
long-term care insurance, they go to emergency rooms when in crisis.
(90) Minority groups may lack information about palliative care, and
have little confidence that racially and culturally biased services will
meet their needs. (91) All these problems are compounded for refugees.
(92)
The elderly in all ethnic groups become special victims of
discrimination when the medical system is focused on acute care, and
because services are channeled toward the most economically productive.
The elderly can lack a voice in which to advocate for themselves. A
Dutch author questions whether traditional social solidarity in health
care still extends to the elderly, who are placing unprecedented strains
on health systems. Though the Netherlands offers universal health care,
there are waiting lists for services of most use to the elderly, such as
nursing homes, home care, cataract surgery, and hip replacements. (93)
Many of these same factors apply to disabled people. (94) Religious
organizations and local churches, often partnering with secular social
service agencies and state and federal programs, can be successful
advocates and innovators in community-based care. (95)
Every one of the above barriers to compassionate, expert care at
the end of life is exacerbated in the global context--where
"terminal" medical circumstances arise more frequently and
earlier than in privileged societies. In contexts of generalized
scarcity, suffering, and conflict, therapeutic and palliative care
supported by medical professionals is virtually nonexistent. Paul Farmer
and Nicole Gastineau Campos "interrogate" the assumptions of
"first world" bioethics, considering that AIDS, malaria, and
tuberculosis are the three leading infectious killers of adults in the
poorest communities in the world. Farmer and Campos find an "absurd
divorce" between real health dilemmas and "the professional
commentary they spawn," comparing the latter to Monty Python skits.
(96) Citing the work of Brazilian liberation theologian Marcio Fabri
dos Anjos, Farmer and Campos call for greater connection between
research and "third world" therapeutics, urge "the
systematic participation of the destitute sick," (97) and challenge
theologians to invest in turning this situation around. (98) Theological
bioethicists should answer this plea to take a hand in reversing the
conditions they negatively assess, by adopting a stance of
"pragmatic solidarity," (99) to "fulfill the right to
health [care] and share the fruits of research with the world's
poorest communities." (100)
This agenda is confirmed by representatives from Catholic bioethics
institutes, in an international colloquium on "Globalization and
the Culture of Life," focused on the frail elderly and dying. (101)
It reaffirms Catholic tradition against euthanasia, in favor of
declining disproportionate treatments, and in support of palliative care
for all. Yet these options are placed in a larger justice framework:
"the alleviation of material, social, and spiritual poverty of the
frail elderly is a fundamental obligation that Catholic health care and
Catholic bioethics must address, according to the preferential option of
the poor." It should incorporate "the participation of less
affluent peoples and societies." (102) Above all: "In applying
the principle of the common good to the development of new technologies
and research priorities, the needs of the less affluent are to be given
priority." (103)
These recommendations encapsulate the message of this article.
Theological bioethics should strive to reshape domestic and
international health policy through political participation, as well as
through the traditional venues of scholarship and education. Theologians
addressing bioethics have an opportunity and a responsibility to
redefine the social agenda of the field to highlight compassionate care
and to favor the needs of the poor. The specific issues of death and
dying highlight the inequality and deprivation that plague access to
health resources worldwide. To change this situation should be the first
priority of theological bioethics.
(1) The last "Moral Notes" review of bioethics was Maura
A. Ryan's "Beyond a Western Bioethics," Theological
Studies 65 (2004) 158-77. I will concentrate on periodical contributions
from 2003 to 2005, and do not pretend comprehensiveness.
(2) See Cynthia B. Cohen, "Stem Cell Research in the U.S.
after the President's Speech of August 2001," Kennedy
Institute of Ethics Journal 14 (2004) 97-114; Gerard Magill,
"Science, Ethics, and Policy: Relating Human Genomics to Embryonic
Stem-Cell Research and Therapeutic Cloning," in Genetics and
Ethics: An Interdisciplinary Study, ed. Gerard Magill (Saint Louis:
Saint Louis University, 2004) 253-84; and Christopher Kaczor, The Edge
of Life: Human Dignity and Contemporary Bioethics (Dordrecht: Springer,
2005) especially chap. 5, "An Ethical Assessment of Bush's
Guidelines for Stem Cell Research" 83-96.
(3) See Daniel Callahan, "Promises, Promises: Is Embryonic
Stem-Cell Research Sound Public Policy?" Commonweal 132 (January
14, 2005) 12-14; Debra Greenfield, "Impatient Proponents:
What's Wrong with the California Stem Cell and Cures Act?" and
David Magnus, "Stem Cell Research Should Be More Than a
Promise," Hastings Center Report 34.5 (2004) 32-35 and 35-36.
(4) National Academy of Sciences, Committee on Guidelines for Human
Embryonic Stem Cell Research, Guidelines for Human Embryonic Stem Cell
Research (Washington: National Academies, 2005), available online at
http://books.nap.edu/catalog/11278.html (accessed September 22, 2005).
(5) United Nations General Assembly, "United Nations
Declaration on Human Cloning," National Catholic Bioethics
Quarterly 5 (2005) 357-58. See LeRoy Walters, "Human Embryonic Stem
Cell Research: An Intercultural Perspective," Kennedy Institute of
Ethics Journal 14 (2004) 3-38.
(6) For an interdisciplinary debate that includes several
theologians, the majority Catholic, consult Nancy E. Snow, ed., Stem
Cell Research: New Frontiers in Science and Ethics (Notre Dame:
University of Notre Dame, 2003). Other works include Brent Waters and
Ronald Cole-Turner, ed., God and the Embryo: Religious Voices on Stem
Cells and Cloning (Washington: Georgetown University, 2003); Suzanne
Holland, Karen Lebacqz, and Laurie Zoloth, ed., The Human Embryonic Stem
Cell Debate: Science, Ethics, and Public Policy (Cambridge, Mass.: MIT,
2001); Thomas A. Shannon and James J. Walter, The New Genetic Medicine:
Theological and Ethical Reflections (Lanham, Md.: Rowman &
Littlefield, 2003); William Fitzpatrick, "Surplus Embryos,
Nonreproductive Cloning, and the Intend/Foresee Distinction,
"Hastings Center Report 33.3 (2003) 29-36; Paul Lauritzen,
"Stem Cells, Biotechnology, and Human Rights: Implications for a
Posthuman Future," Hastings Center Report 35.2 (2005) 25-33; Bart
Hansen and Paul Schotsmans, "Stem Cell Research: A Theological
Interpretation," Ephemerides theologicae Lovanienses 80 (2004)
339-72.
(7) This is not a new debate. See Thomas A. Shannon and Alan B.
Wolter, "Reflections on the Moral Status of the Pre-embryo,"
Theological Studies 51 (1990) 603-26, also included in James J. Walter
and Thomas A. Shannon, Contemporary Issues in Bioethics: A Catholic
Perspective (Lanham, Md.: Rowman & Littlefield, forthcoming); Waters
and Cole-Turner, God and the Embryo; and a special focus on "The
Embryo Question," New Atlantis 7 (Fall 2004/Winter 2005) 99-131
(8) See President's Council on Bioethics, White Paper."
Alternative Sources of Pluripotent Stem Cells (Washington:
President's Council on Bioethics, May 2005), available at
http://www.bioethics.gov/reports/white_paper/index.html (accessed
October 10, 2005); Joint Statement with Signatories, "Production of
Pluripotent Stem Cells by Oocyte-Assisted Reprogramming," and
Edward J. Furton, "A Defense of Oocyte-Assisted
Reprogramming," both in National Catholic Bioethics Quarterly 5
(2005) 579-83 and 465-68, respectively: Joachim Huarte and Antoine
Suarez, "On the Status of Parthenotes: Defining the Developmental
Potentiality of a Human Embryo," National Catholic Bioethics
Quarterly 4 (2004) 755-70; and Paul J. Hoehner, "Altered Nuclear
Transfer" and W. Malcolm Byrnes, "Why Human 'Altered
Nuclear Transfer' is Unethical," both in National Catholic
Bioethics Quarterly 5 (2005) 261-70 and 271-79.
(9) See the 2005 U.N. Human Development Report at
http://hdr.undp.org/reports/global/2005/(accessed September 22, 2005).
(10) Maura A. Ryan, "Beyond a Western Bioethics."
(11) John Paul II, "Remarks to President Bush on Stem Cell
Research," National Catholic Bioethics Quarterly 1 (2001) 617-18.
(12) John Paul II, "Message for the Celebration of the 13th
World Day of the Sick," September 8, 2004,
http://www.vatican.va/holy_father/ john_paulii/messages/sick (accessed
September 22, 2005). See also John Paul II, "Address to Promote
Health Development based on Equity, Solidarity, and Charity,"
November 6, 1997, http://www.healthpastoral.org/wordsofpope/
jpii05_en.htm (accessed September 22, 2005).
(13) See Dolores L. Christie, Last Rights: A Catholic Perspective
on End-of-Life Decisions (Lanham, Md.: Rowman & Littlefield, 2003);
David F. Kelly, Contemporary Catholic Health Care Ethics (Washington:
Georgetown University , 2004) 127-244; and John Berkman, "Medically
Assisted Nutrition and Hydration: A Contextualization of Its Past and a
Direction for Its Future," Thomist 68 (2004) 69-104.
(14) Congregation for the Doctrine of the Faith (hereafter CDF),
Declaration on Euthanasia, May 5, 1980 (Boston: St. Paul Editions,
1980). This document is also available in the National Catholic
Bioethics Quarterly 1 (2004) 431-47.
(15) CDF, Declaration on Euthanasia 12.
(16) U.S. Conference of Catholic Bishops, Ethical and Religious
Directives for Catholic Health Care Services (Washington: United States
Catholic Conference, 2001), available at
http://www.usccb.org/bishops/directives.shtml (accessed September 24,
2005).
(17) Ibid., introduction to part 5.
(18) John Paul II, "Address to the Participants in the
International Congress on Life-Sustaining Treatments and Vegetative
State: Scientific Advances and Ethical Dilemmas," March 20, 2004,
National Catholic Bioethics Quarterly 4 (2004) 367-70, at 369 and
573-76, at 575 (original emphasis). The Autumn 2004 issue of the NCBQ
carries articles and letters on this speech. The "Ethics" link
on the Catholic Health Association's website provides
"Resources for Understanding Pope's Allocution on Persons in a
Persistent Vegetative State,"
http://www.vatican.va/holy_father/john_paul_ii/speeches/2004/march/
documents/hf_jp-ii_spe_20040320_congressfiamc_en.html (accessed November
27, 2005). Critiques include: Thomas A. Shannon and James J. Walter
"Implications of the Papal Allocution on Feeding Tubes,"
Hastings Center Report 34.4 (2004) 18-20; Gerald D. Coleman, "Take
and Eat: Morality and Medically Assisted Feeding," America 190
(April 5, 2004) 16-20; Ronald Hamel and Michael Panicola, "Must We
Preserve Life?" America 190 (April 19-26, 2004) 6-13; John F.
Tuohey, "The Pope on PVS: Does JP II's Statement Make the
Grade?" Commonweal 131 (June 18, 2004) 10-12.
(19) John Paul II, "Address ... on Life-Sustaining
Treatments," para. 4.
(20) Richard M. Doerflinger, "John Paul II on 'The
Vegetative State': An Important Papal Speech," Ethics'
and Medics 29.6 (2004) 2-4. Agreeing is Donald E. Henke, "A History
of Ordinary and Extraordinary Means," National Catholic Bioethics
Quarterly 5 (2005) 575.
(21) Peter A. Cataldo, "John Paul II on Nutrition and
Hydration," National Catholic Bioethics Quarterly 4 (2004) 513-36,
at 536. Cataldo maintains that the duty to preserve life has always been
regarded independently of the presence of personal and spiritual
capacities.
(22) Mark S. Latkovic, "A Critique of the View of Kevin
O'Rourke, O.P.," National Catholic Bioethics Quarterly 5
(2005) 512. Latkovic centers his argument around positions taken by
O'Rourke in writing through 1999, and on more recent public oral
statements.
(23) "Richard A. McCormick, "To Save or Let Die: The
Dilemma of Modern Medicine," Journal of the American Medical
Association 229 (1974) 172-76: Pius XII, "Address to an
International Congress of Anesthesiologists," National Catholic
Bioethics Quarterly 2 (2002) 309-14.
(24) Nigel Biggar, Aiming to Kill. The Ethics of Suicide and
Euthanasia (Cleveland: Pilgrim, 2004) 56.
(25) Tom Meulenbergs and Paul Schotsmans, "The Sanctity of
Autonomy? Transcending the Opposition between a Quality of Life and a
Sanctity of Life Ethic," in Euthanasia and Palliative Care in the
Low Countries, ed. Paul Schotsmans and Tom Meulenbergs (Dudley, Mass.:
Peeters, 2005) 135.
(26) Ibid. 137.
(27) Jason T. Eberl, "Extraordinary Care and the Spiritual
Goal of Life: A Defense of the View of Kevin O'Rourke, O.P,"
National Catholic Bioethics Quarterly 5 (2005) 499-501.
(28) Kevin O'Rourke, "Reflections on the Papal Allocution
concerning Care for PVS Patients," provided in manuscript by the
author, and projected for publication in the Journal of Christian
Bioethics.
(29) As in Eugene F. Diamond, M.D., "Assisted Nutrition and
Hydration in Persistent Vegetative State," Linacre Quarterly 71.3
(2004) 199-205.
(30) The CCBI is lodged at St. Michael's College of the
University of Toronto, with support from the Catholic Archdiocese of
Toronto, http://www.utoronto.ca/strikes/bioethics/(accessed September
24, 2005).
(31) CCBI, "Reflections on Artificial Nutrition and
Hydration," National Catholic Bioethics Quarterly 4 (2004) 773-82,
at 780. See also Stephen G. Post, "Tube Feeding and Advanced
Progressive Dementia," Hastings Center Report 31.1 (2001) 36-42.
Post remarks, "'Terminal dehydration' and the analgesic effect it brings about appear to be a natural part of the dying process
of many diseases" (39).
(32) Edward J. Furton, "To the Editor," Hastings Center
Report 35.3 (2005) 5. This issue contains several letters on the subject
by theologians.
(33) Robert P. George, "When Treatment Is in Question,"
Harvard Divinity Bulletin 33 (Spring 2005) 16.
(34) Thomas A. Shannon, "The Legacy of the Schiavo Case,"
America 192 (June 6-13, 2005) 19.
(35) "Best interests" refers to the welfare of persons,
considered as reasonably and objectively as possible. It is different
from what a person in fact chooses, or could be predicted to choose,
were he or she able ("substituted judgment"), since actual
preferences and choices do not always meet the standard of objective
moral defensibility. See Rebecca Dresser, "Schiavo's Legacy:
The Need for an Objective Standard," Hastings Center Report 35.3
(2005) 20-22.
(36) Florida Catholic Conference, "Florida Bishops on Terri
Schiavo," February 15, 2005,
http://www.flacathconf.org/Health/Schiavo%20Statement%202-15-05.htm
(accessed March 31, 2005).
(37) John J. Paris, "To Feed or Not to Feed: Terri Schiavo and
the Use of Artificial Nutrition and Fluids," Southern Medical
Journal 98 (2005) 757.
(38) Ibid.
(39) Furton, "To the Editor" 5.
(40) Thomas A. Shannon and James J. Walter, "Assisted
Nutrition and Hydration and the Catholic Tradition: The Case of Terri
Schiavo," Theological Studies 66 (2005) 662.
(41) Thomas A. Shannon and James J. Walter, "Implications of
the Papal Allocution on Feeding Tubes," Hastings" Center
Report 34.4 (2004) 18.
(42) Mark Repenshek and John Paul Slosar, "Medically Assisted
Nutrition and Hydration: A Contribution to the Dialogue," Hastings
Center Report 34.6 (2004) 15.
(43) CCBI, "Reflections" 778.
(44) Berkman, "Medically Assisted Nutrition and
Hydration." Berkman points out that for frail but conscious
patients, oral feeding may carry important interpersonal and sacramental
significance.
(45) Jorge L. A. Garcia, "Understanding the Ethics of
Artificially Providing Food and Water," read in manuscript. This
paper will appear in the Linacre Quarterly (2006), as well as in
Nutrition and Hydration: The New Catholic Debate, ed. Christopher
Tollefsen (Springer, forthcoming).
(46) Scott M. McConnaha, "Artificial Nutrition and Hydration:
Recent Changes in Understanding Obligations," Linacre Quarterly
71.3 (2004) 217.
(47) John Paul II, "Building a Culture of Life, Ad Limina Address to the Bishops of California, Nevada, and Hawaii," Origins
28 (1998) 316, as cited by McConnaha, "Artificial Nutrition"
217.
(48) Dan O'Brien, John Paul Slosar, and Anthony R. Tersigni,
"Utilitarian Pessimism, Human Dignity, and the Vegetative
State," National Catholic Bioethics Quarterly 4 (2004) 497-512, at
504, 511. They cite seven medical articles arguing that ANH is not
always beneficial.
(49) Leo Pessini, "Distanasia: Algumas reflexoes bioeticas a
partir da realidade brasileira," Bioetica 12 (2004) 39-60.
(50) For perspectives beyond Christianity, see Neil Gillman,
"Theological Reflections on the End of Life: A Theologian's
Address to Physicians," Conservative Judaism 53.3 (2001) 17-26: G.
Hussein Rassool, "Commentary: An Islamic Perspective," Journal
of Advanced Nursing 46 (2004) 281-83: Susan Orpett Long,
"Ancestors, Computers, and Other Mixed Messages: Ambiguity and
Euthanasia in Japan," Cambridge Quarterly of Healthcare Ethics 10
(2001) 62-71.
(51) Andrew Lustig, "John Paul II on the Good of Life,"
in John Paul H's Contribution to Catholic Bioethics, ed.
Christopher Tollefsen (Norwell, Mass.: Springer, 2004) 131-50.
(52) Marciano Vidal, "Apropiacion etica de la muerte," in
Bioetica: Un dialogo plural, ed. Jorge Jose Ferrer and Julio Luis
Martinez (Madrid: Universidad Pontificia de Comillas, 2002) 221-33.
(53) Francesc Torralba Rosello, "Repensar la eutanasia:
Critica y deconstruccion de topicos," in Bioetica 185-200. For a
sensitive and provocative rendering of these ambiguities, see Margaret
Pabst Battin, Ending Life: Ethics and the Way We Die (New York: Oxford
University, 2005).
(54) Brian Doyle, "Killing Yourself: Physician-Assisted
Suicide in Oregon," in American Catholics, American Culture:
Tradition and Resistance, ed. Margaret O'Brien Steinfels (Lanham,
Md.: Rowman & Littlefield, 2004) 76-98. On the "liberal"
biases operative among Oregon PAS activists, see Robert P. Jones,
"Cultural Bias and Liberal Neutrality: Reconsidering the
Relationship between Religion and Liberalism through the Lens of the
Physician-Assisted Suicide Debate," Journal of the Society of
Christian Ethics 22 (2002) 229-63.
(55) See Paul Schotsmans and Tom Meulenbergs, ed., Euthanasia and
Palliative Care in the Low Countries (Leuven: Peeters, 2005); and Jan
Jans, "The Belgian 'Act of Euthanasia': Clarifying the
Context, Legislation, and Practice from an Ethical Point of View,"
Journal of the Society of Christian Ethics 25 (2005) 163-77. The
majority of contributors to this volume are Catholic theologians and
philosophers.
(56) Lars Johan Materstvedt, David Clark, John Ellershaw, et al.,
"Euthanasia and Physician-Assisted Suicide: A View from an EAPC
Ethics Task Force," Palliative Medicine 17 (2003) 97, available at
http://www.eapcnet.org/projectsethicshistory.asp (accessed July 11,
2005).
(57) Bert Broeckaert and Rien Janssens, "Palliative Care and
Euthanasia: Belgian and Dutch Perspectives," in Euthanasia and
Palliative Care 35-69.
(58) Stephen Drake, "Euthanasia Is Out of Control in the
Netherlands," Hastings Center Report 35.3 (2003) 53, discusses the
so-called "Groningen protocol" whereby infants with serious
medical conditions may be killed. See Eduard Verhagen and Pieter Sauer,
"The Groningen Protocol--Euthanasia in Severely Ill Newborns,"
New England Journal of Medicine 352 [2005] 959452. Theo A. Boer contends
that, while caution is necessary, the democratic political process in
the Netherlands limits abuses ("After the Slippery Slope: Dutch
Experiences on Regulating Active Euthanasia," Journal of the
Society of Christian Ethics 23 [2003] 225-42. David J. Mayo and Martin
Gunderson reject paternalism on PAS for the disabled ("Vitalism Revitalized; Vulnerable Populations, Prejudice, and Physician-Assisted
Death," Hastings Center Report 32.4 [2002] 14-21.
(59) "Euthanasia and Physician-Assisted Suicide" 99.
(60) Lois Snyder and Daniel P. Sulmasy, "Physician-Assisted
Suicide," Annals of Internal Medicine 135 (2001) 209-16. Sulmasy is
a physician and theologian.
(61) See Jan Jans, "Churches in the Low Countries on
Euthanasia: Background, Argumentation, and Commentary," in
Euthanasia and Palliative Care 175-204.
(62) Ibid. 183.
(63) John Paul II, "To the Participants in the 19th
International Conference of the Pontifical Council for Pastoral Health
Care," National Catholic Bioethics Quarterly 5 (2005) 154-55.
(64) Jan Jans, "Churches in the Low Countries on
Euthanasia" 200-1.
(65) Alllen Verhey, Reading the Bible in the Strange World of
Medicine (Grand Rapids: Eerdmans, 2003) 320.
(66) CDF, Declaration on Euthanasia 9.
(67) Verhey, Reading the Bible 320.
(68) See Henk ten Have and David Clark, ed., The Ethics of
Palliative Care: European Perspectives (Philadelphia: Open University,
2002); and Bruce Jennings, True Ryndes, Carol D'Onofrio, and Mary
Ann Baily, Access to Hospice Care: Expanding Boundaries, Overcoming
Barriers, Special Supplement, Hastings Center Report, March-April 2003.
For resources consult the National Hospice and Palliative Care
Organization, http://www.nhpco.org/templates/1/homepage.cfm; and the
Catholic-sponsored Supportive Care of the Dying: A Coalition for
Compassionate Care, at http://www.careofdying.org/; also available
through the Catholic Hospital Association's links at
http://www.chausa.org/under Continuing Care Ministries (accessed
9/29/05). See also Chris Gastmans, "Caring for a Dignified End of
Life in a Christian Health Care Institution: The View of Caritas
Catholica Flanders," in Euthanasia and Palliative Care 204-25;
Kathryn A. Holewa and John P. Higgins, "Palliative Care--The
Empowering Alternative: A Roman Catholic Perspective," Trinity
Journal 24 (2003) 207-19.
(69) President's Council on Bioethics, Taking Care: Ethical
Caregiving in Our Aging Society (Washington: President's Council on
Bioethics, September 2005), available at
http://bioethicsprint.bioethics.gov/reports/taking_care (accessed
November 21, 2005); and Bruce Jennings, Thomas H. Murray, and Gregory A.
Kaebnick, ed., Improving End of Life Care: Why Has It Been So Difficult?
A Hastings Center Special Report, Hastings Center Report 35.6 (2005)
2-60, available at http://
www.thehastingscenter.org/research/healthcarepolicy8.asp (accessed
November 21, 2005).
(70) Snyder and Sulmasy, "Physician-Assisted Suicide"
209.
(71) Mary Jo Iozzo writes from experience of faithful caregiving
and the inadequate response of the health care system ("The Writing
on the Wall ... Alzheimer Disease: A Daughter's Look at Mom's
Faithful Care of Dad." Journal of Religion, Disability, and Health,
forthcoming.
(72) Javier Barbero Gutierrez, "Del set al deber ser:
Experiencia de sufrimiento y responsabilidad moral en el ambito
clinico," in Bioetica 888.
(73) Roger Burggraeve, "You Shall Not Let Anyone Die Alone:
Responsible Care for Suffering and Dying People," in Euthanasia and
Palliative Care 155. (74) Ibid. 159.
(75) Brigid Vout, "The Way of Suicide, Assisted Suicide and
Euthanasia, or Evangelium Vitae's Way of Mercy and
Compassion?" Linacre Quarterly 70.4 (2003) 301-15. Vout quotes John
Paul II to the effect that suffering is terrible and that we rightly
turn away from it.
(76) Ibid. 167.
(77) Jorge L. A. Garcia, "Sin and Suffering in a Catholic
Understanding of Medical Ethics," Christian Bioethics, forthcoming.
(78) See Christopher P. Vogt, Patience, Compassion, Hope, and the
Christian Art of Dying Well (Lanham, Md.: Rowman & Littlefield,
2004); and "Practicing Patience, Compassion, and Hope at the End of
Life: Mining the Passion of Jesus in Luke for a Christian Model of Dying
Well," Journal of the Society of Christian Ethics 24 (2004) 135-58;
as well as Luke Gormally, "Pope John Paul II's Teaching on
Human Dignity and Its Implications for Bioethics," in John Paul
H's Contribution 20-23.
(79) Ibid. 129-40.
(80) Gripping examples appear in David Barnard, Patricia Boston,
Anna Towers, and Yanna Lambrinidou, Crossing Over: Narratives of
Palliative Care (New York: Oxford University, 2000).
(81) A recent treatment is Peter A. Clark, "Morphine vs.
ABT-594: A Reexami nation of the Principle of Double Effect,"
Linacre Quarterly 70.2 (2003) 109-20.
(82) Biggar, Aiming to Kill 78.
(83) Christine Walker Campi, "When Dying Is as Hard as
Birth," New York Times, 5 January 1998, A19, as cited by Clark,
"Morphine vs. ABT-594" 114-15. Campi is the executive director
of Medical Mission International.
(84) Margaret A. Farley, "Issues in Contemporary Christian
Ethics: The Choice of Death in a Medical Context," Santa Clara
Lectures 1.3 (1995) 14.
(85) See Robert D. Orr, M.D., "Just Put Me to Sleep ...
PLEASE! Ethical Issues in Palliative and 'Terminal'
Sedation": William Cutter, "Terminal Sedation: A Jewish
Perspective"; and James J. Walter, "Terminal Sedation:
Catholic Perspective," all in the newsletter of Lorna Linda
University's Ethics Center, Update 18.2 (2002) 1-12; Broekaaert and
Janssens, "Palliative Care and Euthanasia," in Euthanasia and
Palliative Care 61-63; and Gastmans, "Caritas Catholica
Flanders," ibid. 211-12.
(86) Muriel Gillick, "Terminal Sedation: An Acceptable Exit
Strategy?" Annals of Internal Medicine 241 (2004) 236-37.
Broekaaert and Janssens confirm that in both the Netherlands and
Flanders, there is a percentage of cases in which pain relief is
intended by the doctors both to end pain and to terminate life
("Palliative Care and Euthanasia" 63). Gillick finds it
troubling that, since palliative care consultation is seldom used in the
Netherlands, many doctors may have elected terminal sedation when less
drastic means were available.
(87) Biggar, Aiming to Kill 114, 164.
(88) An extensive discussion goes beyond the scope of this article,
but see Lisa Sowle Cahill, Bioethics and the Common Good (Milwaukee:
Marquette University, 2003); and Theological Bioethics: Justice,
Participation, and Change (Georgetown University, 2005); Zdravko
Plantak, "Universal Access to Health Care and Religious Basis of
Human Rights," Update 20.2 (2005) 1-12; Aaron Mackler, "Jewish
and Roman Catholic Approaches to Access to Health Care and
Rationing," in Kennedy Institute of Ethics Journal 11 (2001)
317-36; and David Novak, "A Jewish Argument for Socialized
Medicine," Kennedy Institute of Ethics Journal 13 (2003) 313-28.
(89) Malcolm Payne, "Social Class, Poverty, and Social
Exclusion," in Death, Dying, and Social Differences, ed. David
Oliviere and Barbara Monroe (New York: Oxford University, 2004) 8.
Oliviere is Director of Education and Training, and Monroe is Chief
Executive of St. Christopher's Hospice, London, the international
leader in hospice care.
(90) Ibid. 17.
(91) Shirley Firth, "Minority Ethnic Communities and Religious
Groups," in Death, Dying, and Social Differences 29-30.
(92) Mary Blanche and Chris Endersby, "Refugees," in ibid
149-63.
(93) Ruud ter Meulen, "Are There Limits to Solidarity with the
Elderly?" in Healthy Thoughts: European Perspectives on Health Care
Ethics, ed. R. K. Lie and Paul Schotsmans, with B. Hansen and T.
Meulenbergs, co-ed. (Sterling, Va.: Peeters, 2002) 329-36.
(94) Ann McMurray, "Older People," and Linda McEnhill,
"Disability," in Death, Dying, and Social Differences 63-77
and 97-118.
(95) See, for example, Harold G. Koenig and Douglas Lawson, with
Malcolm McConnell, Faith in the Future: Healthcare, Aging, and the Role
of Religion (Philadelphia: Templeton Foundation, 2004); and Anna-Marie
Madison and Brenda F. McGadney, "Collaboration of Churches and
Service Providers: Meeting the Needs of Older African Americans,"
Journal of Religious Gerontology 11.1 (2000) 23-37. Resources, networks,
and advocacy opportunities can be found on the Catholic Hospital
Association's website, http://www.chausa.org (accessed October 4,
2005).
(96) Paul Farmer and Nicole Gastineau Campos, "Rethinking
Medical Ethics: A View from Below," Developing World Bioethics 4
(2004) 22. This entire issue of the journal is devoted to matters of
global health resource distribution.
(97) Ibid. 17.
(98) Ibid. 36. See Marcio Fabri dos Anjos, "Medical Ethics in
the Developing World: A Liberation Theology Perspective," Journal
of Medicine and Philosophy 21 (1996) 629-37.
(99) Farmer and Campos, "Rethinking Medical Ethics" 37.
(100) Ibid. 38.
(101) International Colloquium of Catholic Bioethics Institutes,
"Globalization and the Culture of Life Consensus Statement,"
National Catholic Bioethics Quarterly 4 (2004) 151-58.
(102) Ibid. 157.
(103) Ibid. 155.
LISA SOWLE CAHILL, the J. Donald Monan, S.J., Professor of Theology
at Boston College, earned her Ph.D. from the University of Chicago
Divinity School. Her areas of specialization include bioethics, ethics
of sex and gender, war and peacemaking, and theological and Scriptural
ethics. Her recent publications include Theological Bioethics:
Participation, Justice, and Change (Georgetown University, 2005) and
Genetics, Theology, and Ethics: An Interdisciplinary Conversation
(Crossroad, 2005) which she edited. Her work-in-progress is a monograph
on the foundations of Christian theological ethics.