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Chapter Title
Artificial Nutrition and Hydration
Copyright Year
2015
Copyright Holder
Springer Science+Business Media Dordrecht
Corresponding Author
Family Name
Tollefsen
Particle
Given Name
Suffix
Christopher
Organization/University
City
State
University of South Carolina
Columbia
SC
Country
Email
USA
christopher.tollefsen@gmail.com
Abstract
Technologies for feeding permanently incapacitated patients enterally or
parenterally through various forms of artificial nutrition and hydration
(ANH) have generated moral questions and controversies. Particularly
for patients in a persistent vegetative state or in advanced Alzheimer
disease but also for terminally ill newborns, there are questions about
whether ANH should be withheld or withdrawn. Is ANH extraordinary
or even futile care? Do its burdens outweigh its benefits? For patients
provided with terminal sedation at the end of life, there are questions about
the accompaniment of sedation with withdrawal of ANH. Is that removal a
form of euthanasia? Or is it a justified part of the palliative care being
provided at the end of life. Two further kinds of cases raise different sets of
issues. First, is the forced feeding, by means of ANH, of hunger-striking
prisoners, as, for example, the detainees at Guantanamo Bay, morally
permissible, or is it a violation of bodily integrity and perhaps a form of
torture? And second, is the failure to provide more adequate nutrition and
hydration, including ANH, for Ebola patients in the developing world a
matter of global injustice? This entry looks at each of these issues in turn.
Keywords
(separated by “-”)
Artificial nutrition and hydration (ANH) - Persistent vegetative state
(PVS) - Alzheimer disease - Terminal sedation - Ordinary and extraordinary
care - Euthanasia - Hunger strike - Ebola
Encyclopedia of Global Bioethics
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# Springer Science+Business Media Dordrecht 2015
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Artificial Nutrition and Hydration
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Christopher Tollefsen*
University of South Carolina, Columbia, SC, USA
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Abstract
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Technologies for feeding permanently incapacitated patients enterally or parenterally through various
forms of artificial nutrition and hydration (ANH) have generated moral questions and controversies.
Particularly for patients in a persistent vegetative state or in advanced Alzheimer disease but also for
terminally ill newborns, there are questions about whether ANH should be withheld or withdrawn. Is
ANH extraordinary or even futile care? Do its burdens outweigh its benefits? For patients provided with
terminal sedation at the end of life, there are questions about the accompaniment of sedation with
withdrawal of ANH. Is that removal a form of euthanasia? Or is it a justified part of the palliative care
being provided at the end of life. Two further kinds of cases raise different sets of issues. First, is the forced
feeding, by means of ANH, of hunger-striking prisoners, as, for example, the detainees at Guantanamo
Bay, morally permissible, or is it a violation of bodily integrity and perhaps a form of torture? And second,
is the failure to provide more adequate nutrition and hydration, including ANH, for Ebola patients in the
developing world a matter of global injustice? This entry looks at each of these issues in turn.
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Keywords
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Artificial nutrition and hydration (ANH); Persistent vegetative state (PVS); Alzheimer disease; Terminal
sedation; Ordinary and extraordinary care; Euthanasia; Hunger strike; Ebola
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Introduction
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Nutrition and hydration are necessary components of any attempt to maintain human life, including any
individual human being’s attempt to maintain his or her own life. At certain points in the human life span,
however, individuals may be not yet capable of providing nutrition and hydration for themselves, or they
may be temporarily or permanently incapacitated and thus no longer capable of so providing. In some
cases, the difficulty may be rectified with assistance that is in no way medical: mothers nurse their children
at the breast, and children spoon-feed their aging parents. In other circumstances, feeding and hydrating
must be performed using some form of medical intervention: a nasogastric tube, for example, or a
percutaneous endoscopic gastrostomy (PEG) tube. Only these latter interventions should be considered
part of the domain of artificial nutrition and hydration (ANH), sometimes also called medically assisted
nutrition and hydration (MANH), though there are questions about the similarity between ANH so
considered and other assisted forms of nutrition and hydration that require no medical intervention.
In many cases, the provision of ANH raises no significant moral questions. Where a patient is
temporarily incapacitated, and is expected to recover fully, nutrition and hydration will be provided
medically as necessary to sustain life. At the end of life, however, and in certain other cases, the decision to
provide, withdraw, or refuse ANH raises moral issues on which there is no consensus. Four distinct kinds
*Email: christopher.tollefsen@gmail.com
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of end of life cases raise pressing dilemmas. First are cases involving care of patients in a persistent
vegetative state (PVS), many of whom have no advance directives; must they be provided ANH, or is it
permissible or even obligatory to remove ANH? Second are those cases involving care of patients
suffering from advanced Alzheimer disease (AD) who are no longer willing or able to take food orally;
again, the issue is raised whether they should be provided ANH or not. Third are cases of infants suffering
from terminal or otherwise devastating conditions but who could live for some period of time, possibly
extended, with the provision of ANH. Fourth are cases of dying patients who have been put into deep or
terminal sedation; is it permissible to accompany the practice of terminal sedation with a withdrawal of
ANH?
Two further kinds of cases raise additional questions. The first concerns reports that hunger-striking
prisoners at Guantanamo Bay have been coercively provided with ANH in order to sustain their lives.
Some have asked whether this is a violation of core bioethical principles and even whether it might
amount to torture. A second issue has arisen concerning the recent Ebola epidemic. There is a considerable discrepancy in care for Ebola patients between developed and developing nations, including in the
specific domain of ANH, with patients in Western hospitals experiencing higher recovery rates due,
among other things, to better maintenance of hydration in the face of persistent diarrhea and vomiting.
This discrepancy raises questions about the worldwide distribution of recourses and global justice.
All these issues may be considered properly “global” in the following ways. First, the conditions that
lead to questions about ANH are found globally: PVS, Alzheimer disease, and life-threatening impairments among infants are not culturally specific difficulties; worldwide, medical professionals, families,
and societies must address the moral problems raised by these conditions. Similarly, Ebola now should be
considered a global health issue as well. And even the question of force-feeding of hunger strikers has
global reach: hunger strikes are a favored form of protest of the disenfranchised worldwide.
Second, across a variety of different cultural contexts, there are important differences and commonalities to the concerns raised by ANH. Different ethnic, religious, and medical communities take different
approaches to the provision of ANH; some are aggressive in providing, while others aggressive in
refusing ANH. In some parts of the globe, the focus is primarily on the individual: it is asked whether
ANH is in his or her best interests, or in line with his or her autonomous choices. In other areas, the
approach may be more familial: what does the family wish for the patient and how may those wishes be
best respected. Different conceptions of the human person likewise create differences of emphasis and
approach.
At the same time, there is a core cluster of moral issues and concerns that remain relatively constant
across global contexts. Those issues involve questions about our positive obligations to maintain life and
prevent suffering, and our negative obligations not to kill, and the perceived tensions between these norms
in particular cases. Moreover, even when the issue of the provision of ANH has not yet become exigent
due to a lack of resources in parts of the developing world, this state of affairs is unlikely to continue in
perpetuity. ANH is a relatively easy and inexpensive technology to provide. With globalization, it is
unlikely that any area of the world will fail to be faced with the moral issues raised by ANH.
Finally, the moral discussion of ANH is permeated across the globe by religious values and language.
Most of the major world religions, for example, issue guidance in the treatment of the dying and offer
official teaching on the permissibility or impermissibility of taking life. Some offer additional guidance
specifically on the matter of providing food and hydration by artificial means. Thus, to the extent that the
religious influences on the discussion of ANH are global, to that extent are the issues themselves global.
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Reflective discussion of the ethics of refusing or withdrawing nutrition and hydration from sick or dying
persons has a substantial history. A sustained theological discussion takes place in the work of Catholic
moralists between the sixteenth and twentieth centuries in terms relevantly similar to contemporary
discussion: if a person requires food that would be costly, or difficult to obtain, or to which he is strongly
averse in order to preserve life, does he have an obligation to procure it? Francisco de Vittoria
(1492–1546) answered in the negative, and subsequent discussion over the next four centuries tended
to concur with his opinion (Cronin 2011).
The discussion inevitably needed to take account of the development of techniques by which nutrition
and hydration could be provided to the incapacitated. The relevant techniques may be divided into two
categories, enteral feeding technologies and parenteral feeding technologies (American College of
Gastroenterology 2011). The former deliver nutrition and hydration to the gastrointestinal tract, whether
by a nasogastric tube or by insertion of a tube through the skin near the abdomen. Nutrition and hydration
are then delivered either to the stomach, duodenum, or jejunum. The most common of these techniques is
the percutaneous endoscopic gastrostomy tube (PEG tube). Parenteral ANH, by contrast, is provided
intravenously.
Reflecting on the previous 400 years of discussion of nutrition and hydration, but in light of the
opportunities afforded by nasogastric feeding, the moral theological Daniel Cronin suggested in 1958 that
tube feeding could be “extraordinary” treatment on occasion, that is, that it would fail to provide
proportionate benefit to burden and thus not be obligatory to provide a patient (Cronin 2011). The
language of “ordinary and extraordinary” and “proportionate and disproportionate” continues to be
used often in the discussion of these issues, although it is rejected by others in favor of either principlist
analysis, which emphasizes autonomy, benevolence, non-maleficence, and justice, or consequentialism,
which emphasizes the pursuit of the greatest good for the greatest number.
Norms concerning the removal of ANH have also emerged through prominent legal cases. In the
United States, the Supreme Court ruled in 1990 in Cruzan v. Director, Missouri Department of Health,
that ANH was a form of medical treatment that could be refused by a patient. Thus, given “clear and
convincing” evidence that an unresponsive patient would not have desired it, ANH should be withdrawn.
In the United Kingdom, Anthony Bland had been in a persistent vegetative state for 4 years when the
House of Lords ruled in Airedale N.H.S. Trust v. Bland (1993) that ANH should be withdrawn on grounds
of medical futility. Again in the United States, the question of withdrawing ANH returned to prominence
in 2005, in the case in Theresa (Terri) Schiavo. Schiavo had suffered cardiac arrest in 1990 and was in a
persistent vegetative state, kept alive with a feeding tube for 15 years. After years of legal challenge by her
parents, who wished to continue caring for her, her husband was eventually allowed by the courts to
remove her feeding tube and she died.
These three cases, and especially the Bland and Schiavo cases, have generated both controversy and
analysis. The analysis and the moral considerations arising from it have been exported to additional areas
of controversy over ANH, specifically to questions concerning the care of patients with Alzheimer
disease, terminally ill infants, and patients undergoing terminal sedation. Thus, the case of ANH for
patients in a PVS is in many respects foundational for the ethics of artificial nutrition and hydration.
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ANH and the Persistent Vegetative State
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Patients in a so-called persistent vegetative state (PVS) are in an awake but nonresponsive condition,
whether as a result of some sort of physical trauma or because of a prolonged period of anoxia. While there
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are cases of misdiagnosis, patients in the latter kind of PVS are generally considered to be in an
irreversible state. The damage to the cerebral cortex is irreparable; there is no cure, nor will the brain
heal itself. Because this part of the brain is responsible for consciousness and other higher brain functions,
patients in a PVS are thus reasonably expected never to recover consciousness again.
Under such circumstances, many judge that aggressive medical interventions are to be judged
“extraordinary” – that is, not morally obligatory (“ordinary”) – or “disproportionate” in the ratio of
burdens to benefits. A relatively noncontroversial example concerns the use of a ventilator for those
whose ability to breath is severely compromised. In 1976, before the Supreme Court of New Jersey, Karen
Ann Quinlan’s parents argued that her ventilator should be removed because it constituted extraordinary
means. Removal of such means should not, they argued, be considered euthanasia, since death would be a
side effect of the removal and not intended. The Court agreed; however, Quinlan was able to breathe on
her own and survived, with ANH, for 9 more years. Her parents did not argue that ANH constituted
extraordinary or disproportionate means, but in subsequent medical practice ANH has increasingly been
understood as extraordinary for patients in a PVS, and the assertion that its withdrawal is not euthanasia
has been challenged.
The most prominent challenge was made by Pope John Paul II in an allocution to an International
Congress on Life-Sustaining Treatments and Vegetative States in 2004 (John Paul 2004). In that address,
the Pope identified the provision of nutrition and hydration, even if medically assisted, as itself always:
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. . .a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary
and proportionate, and as such morally obligatory, insofar as and until it is seen to have attained its proper finality, which
in the present case consists in providing nourishment to the patient and alleviation of his suffering.
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The Pope then warned that
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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.
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Many commentators argued that this stance of the Pope’s revealed a move away from traditional
Catholic teaching of the refusal of medical interventions when they are judged no longer to provide
proportionate benefit (Shannon 2006). Others defended the Pope’s teaching, which was reiterated in a
document subsequently released by the Congregation for the Doctrine of the Faith (see the essays in
Tollefsen 2008). The Pope’s views have remained controversial and do not mirror larger trends; withdrawal of ANH for patients in a PVS seems to be widely practiced, and the view articulated by the Pope is
a minority position.
Nevertheless, the Pope’s view has been defended on natural law grounds and is not obviously a matter
of revelation or faith only. Moreover, the issues raised by the allocution are important and are related to
those raised by the foundational cases of Quinlan, Cruzan, Bland, and Schiavo. One concerns the nature of
tube feeding and its end. Is such an act a medical procedure whose purpose is the cure of the sick or the
alleviation of the symptoms of an illness? The provision of nutrition and hydration to a patient in a PVS
does not provide a cure and so might be judged by some to be medically futile. Or, is the provision of
ANH, like the provision of nutrition and hydration by other means, such as a spoon or a straw, to those
incapable of self-feeding better understood as a form of nursing care, part of the basic package of benefits
including maintenance of life that we typically provide to those who are incapable of caring for
themselves?
Pope John Paul II’s remarks indicate his acceptance of the second construal. So understood, both his
point and its contrast with competing views may be better comprehended. First, while attempts to cure and
to care may be both refused and withdrawn if they no longer provide proportionate benefit to burden and
are therefore judged to be “extraordinary,” the judgment that the intervention is extraordinary must first be
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guided by accurate assessment of what the relevant benefit is. If ANH is primarily provided in order to
maintain a patient’s life, then it cannot be considered to be futile so long as it successfully does that.
A second concern may be raised at this point: is the maintenance of human life itself good, independently of the other goods that a conscious agent is typically able to pursue? Here again, there are
disagreements between those, such as the Pope, who hold life to be a basic and fundamental human
good, intrinsic to the nature of the human person, and those who believe it is an instrumental good only,
whose worth is curtailed when other, higher or intrinsic goods, may no longer be pursued. On this second
view, even if the “finality” appropriate to ANH as such is the preservation of life, successful achievement
of that end could only be judged morally by looking to the further ends that sustaining life helped the
patient to realize.
However, if the Pope is correct that the primary purpose of ANH is the form of care associated with
maintaining life and that life is indeed a basic good, then his claim that ANH is in principle “proportionate” where patients in a PVS are concerned becomes intelligible. Where providing a good constitutes a
form of basic care, then the burdens necessary to render that care disproportionate must be significant; but
the burdens of providing ANH just as such are not very significant. The cost, for example, is only a
fraction of the cost of keeping a patient on a respirator; and patients in a PVS (unlike other cases to be
considered below) do not suffer, if they are truly incapable of consciousness. Thus, just as the costs of
bathing the patient, of providing clean bedclothes, and of turning the patient to prevent bedsores – all
forms of nursing care and not medical acts as such – are not reasonably judged disproportionate or
extraordinary, so ANH should also not be judged disproportionate or extraordinary for patients in a PVS,
barring some other set of circumstances.
What of the Pope’s claim that withdrawing ANH for such patients would constitute euthanasia by
omission? Here again, there are a number of interrelated questions. The first concerns the relationship
between euthanasia and intention. Euthanasia is understood by many as intentional taking of life in order
to end suffering. It is thus distinguished from the refusal of various forms of life-sustaining interventions
in order to avoid the burdens consequent upon those interventions: financial costs, negative impacts on
health, emotional distress, and others. When death results as a consequence of the refusal of such
interventions, it is a side effect, and the act is not one of euthanasia.
Some reject the distinction between intention and side effect on which this difference is supposed to
rest. If the distinction makes no difference, then each case of withdrawing, refusing, or omitting a lifesustaining intervention must be judged on its independent moral merits to assess its rightness or
wrongness. No advanced judgment that acts intended to bring about death are always wrongful is possible
on this view.
Even for those who do accept the importance of the intend-foresee distinction, the Pope’s claim that
withdrawal of ANH is euthanasia by omission can be challenged: why is refusal of ANH different from
refusal of, say, a ventilator? Even if unreasonable, must the intention be the patient’s death? One possible
way to understand the Pope’s suggestion is this: the costs and burdens that are avoided in withdrawing
ANH just as such are, as noted above, somewhat minor. ANH is relatively inexpensive, for example.
However, the burdens sustained by those caring for the patient overall are much more extensive, including
the cost of hospital care and the emotional burdens experienced by families. But those burdens are
avoided not by rejecting ANH but by the subsequent death of the patient. If so, then the death is a means to
the end of avoiding the substantive burdens, and the intention is thus indeed lethal (Brugger 2009).
John Paul’s allocution and subsequent discussion have thus set the template for much discussion of
ANH worldwide, particularly among Catholics. The starting points of that discussion are widely rejected,
however. For many, the framework for thinking about the merits of withdrawing ANH for patients in a
PVS concerns questions of quality of life and patient autonomy. Where the patient has given any prior
indication that she would not desire extraordinary measures, or to be on “life support,” this is sometimes
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judged sufficient to withdraw ANH under the patient’s authority; and where the patient is judged to no
longer have a life worth living, or a reasonably high level of quality of life, this is sometimes judged
sufficient to withdraw independent of expressed patient wishes, often by appeal to the patient’s best
interest. A further question may be raised using the language of “personhood.” To those who associate
personhood exclusively with beings who are currently capable of consciousness or self-consciousness,
patients in a PVS may no longer appear to be persons, and thus the debate about whether to feed them will
seem misconstrued; what point can there be in keeping a nonperson alive, even if to do so would not be in
any real sense contrary to their interests?
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Alzheimer Disease
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Alzheimer disease is a progressively debilitating and dementing disease, whose cause is still unknown. As
Alzheimer disease progresses, it affects different parts of the brain, thus determining a typical pattern of
symptoms over time. Alzheimer patients in early stages suffer memory loss; as the disease progresses,
patients experience difficulties with language, perceptual problems (leading to “getting lost” or
disoriented), motor control deficiencies, personality changes and social deficits, and poor judgment. In
the final stages of the disease, patients are increasingly immobile and unresponsive (Brumback 2004).
In this final stage of the disease, patients suffer a variety of impediments as regards eating and drinking,
including loss of appetite, dysphagia, and resistance to attempts to feed them by hand. Malnutrition and
severe weight loss are typical consequences of these difficulties, raising the question of whether these
difficulties should be addressed by ANH. Alzheimer patients are also at risk for aspirational pneumonia;
the question has been raised whether a PEG tube might be a beneficial response to this risk.
In addition to these medical concerns, there are symbolic and social dimensions to the question of
feeding. Families of Alzheimer patients are in an especially vulnerable and helpless state, unable to
reverse their loved ones’ decline. In advanced stages, when it becomes increasingly difficult even to feed
by hand, and the consequences of inadequate nutritional intake become obvious, provision of ANH
appears to be one of the few things that could be done that will actually make a difference, both in terms of
the patient’s quality of life (for nutrition and hydration are thought to be both strengthening and palliating)
and in terms of quantity of life (for nutrition and hydration are thought to be life prolonging).
These claims about the effectiveness of ANH for patients suffering from Alzheimer disease have been
challenged, as regards both their medical and their palliative effect.
In a widely cited review in The New England Journal of Medicine, for example, Martha Gillick has
disputed claims that ANH provides nutritional benefit: “Because of problems with diarrhea, clogging of
the tubes, and the tendency of patients with dementia to pull out the tubes, nutritional status often does not
improve with the use of feeding tubes” (Gillick et al. 2000, p. 206). She additionally questions whether
ANH prolongs life in patients with Alzheimer disease, citing a well-known study by Finucane which
suggests the opposite (Finucane et al. 1996). Finally, Gillick and others have argued that ANH does not
reduce the risk of either aspirational pneumonia or bedsores.
Additionally, ANH for patients with advanced Alzheimer brings with it further burdens. Some of these
burdens are common to other uses of ANH, including those with patients in a PVS, such as an increased
risk of infection. But others are more prominent with Alzheimer and other dementia patients including,
most importantly, distress and confusion at the presence of the tubes, leading to efforts by the patient to
pull the tubes out. Gillick cites one study in which 71 % of Alzheimer patients with feeding tubes had to be
restrained in order to prevent them from pulling the tubes out. Restraints themselves will in turn often be
experienced negatively by Alzheimer patients, causing an additional burden.
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The palliative qualities of ANH for patients with advanced Alzheimer disease have also been
questioned. Family members often desire that ANH be provided in order to prevent the suffering
associated with dehydration and starvation. Some question whether these ends are better pursued, even
in advanced stage dementia and Alzheimer patients, by hand-feeding; ice chips, for example, can prevent
the experience of dehydration. And some question whether Alzheimer patients have a diminished
capacity for experiencing hunger and thirst and subsequently suffer little or not at all in the final stages
of dying.
In the face of these claims, physicians, nurses, and palliative specialists appear to be broadly suspicious
of the use of ANH for advanced Alzheimer patients, although some studies suggest that this is less the case
in the United States than elsewhere (Buiting et al. 2011). In consequence, the state of the question
currently seems to pit medical professionals against the desires of family members, who, as noted above,
are more supportive of ANH.
Some additional questions must be raised, however. First, many commentators agree that while the
evidence for the inutility of ANH for Alzheimer patients is strong, it is not definitive. Further investigation
is necessary to determine what is genuinely best for patients in these cases. Second, important questions
about the proper palliative approach to these patients remain, questions that are increasing in urgency as
the number of Alzheimer patients increases worldwide. Third, some who would agree that ANH
constitutes extraordinary or disproportionate care for advanced Alzheimer patients might nevertheless
disagree with an additional criticism sometimes leveled at the practice, namely, that provision of ANH
extends the dying process. If this is true, it calls into question the claims that ANH does not increase
survival time; moreover, it suggests a concern to hasten the dying process. But those who adopt the
framework of ordinary/extraordinary or proportionate/disproportionate typically hold as well that the
death should never be hastened, even if it should not always be prevented. Here, as elsewhere (as will be
seen again below), some see a risk that refusal or withdrawal of ANH might be used as a form of
euthanasia, bringing death in order to relieve suffering.
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A third category of patient for whom questions of ANH arise is infants suffering from terminal illnesses.
In some cases, such infants are not expected to live longer than a few hours or days, and ANH will not
even be considered. But in other cases, newborns suffering from life-ending illnesses could nevertheless
be expected to live for weeks, months, or even years with ANH, although their premature death would be
expected at some point.
Many of the same sorts of considerations raised by the previous cases of patients in a PVS and patients
with advanced Alzheimer disease will be relevant here. Those who believe that intentional killing or
hastening of life is always wrong will ask whether the benefits of ANH are proportionate to the burdens.
Among the burdens to be considered here is whether ANH itself interferes with other palliative measures
that should be provided to critically ill newborns (Uhl 2011). Others will ask whether the life of the infant
is worth living and whether the provision of ANH merely postpones an inevitable death at the cost of a
longer period of suffering.
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The final issue concerning the provision of ANH to the dying or apparently dying concerns patients at the
end of life whose suffering is so extensive that they are palliated with sedatives to a state of permanent
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unconsciousness. This practice has itself raised some moral questions: to some, it seems the only
reasonable response to pain or suffering for which there is no other relief. Others have argued that
terminal sedation constitutes a form of “slow euthanasia” and that the current state of palliative care and
pain relief makes terminal sedation unnecessary. To this, it is replied that death is not intended in terminal
sedation; rather, a relief of suffering is sought. Nor is the suppression of consciousness intrinsically bad or
wrong; anesthesia and sleep serve as persuasive counterexamples (see the essays in Taboada 2014).
The question of terminal sedation intersects with the ethics of ANH, however, insofar as an occasional
part of that practice includes the simultaneous discontinuation of ANH. Once again, a central question is
whether the withdrawal of ANH constitutes a form of intentional killing. Some argue that while terminal
sedation need not involve any such intention, it is accompanied by the withdrawal of ANH primarily in
order to hasten death. Thus they draw a distinction between terminal sedation with and terminal sedation
without ANH, arguing that the latter is akin to euthanasia (Holm 2013). On the other hand, where
permanent unconsciousness is expected, and there is no possibility of recovery, others argue that the
provision of ANH is futile or that it constitutes an unreasonable prolongation of life. Thus, once again, key
arguments from the debate over PVS are replicated.
Across the four areas discussed so far, then, common themes emerge. Is the withdrawal or refusal of
ANH in some particular case, with a patient in some particular condition, a form of euthanasia? Or is the
provision of ANH to such a patient futile, or non-beneficent, increasing rather than decreasing suffering,
whether directly, by prolonging a life not worth living? To these questions we may add a further question:
when questions about ANH should be addressed for incompetent patients, whose decisions should be
given authority? In the case of Terri Schiavo, this question was central to the dispute between her husband
and her parents. In other cases, there are conflicts between doctors and families or between doctors and
nurses or other medical professionals. And in yet other cases, there are conflicts between the wishes of
family members or physicians and courts. In England, for example, a court judgment is required in order
to remove ANH from a PVS patient; this typically is a somewhat pro forma matter. However, in 2011,
requests by family members to remove ANH from a patient in a minimally conscious state were denied by
a judge in the case of W v M on grounds of both sanctity of life and best interests. The case indicates that
questions concerning the locus of authority in medical decision making remain troubled.
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The next case to be discussed raises rather different issues than the first four. As part of the continuing
response to the attacks of September 11, 2001, so-called unlawful enemy combatants have been kept, in
many cases without trial, at a United States prison in Guantanamo Bay, Cuba. Since 2002, there have been
several hunger strikes, by individuals or groups, to protest various aspects of captivity, ranging from the
initial denial of permission to wear turbans to continued detention without trial or expatriation.
In response, the United States has forcefully restrained prisoners in order to feed them enterally through
a nasograstric tube. Since 2005, a “restraining chair” has been used to subdue prisoners during the
procedure. In one of the most recent cases, a federal judge permitted the forced feeding of a Syrian
detainee, Abu Wa’el Dhiab, to prevent his death, while criticizing the Pentagon’s unwillingness to
compromise with the detainee.
The case of forced feeding of hunger strikers in a prison raises difficult issues for which the ordinary
framework of bioethics may not be well suited. Under the vast majority of circumstances, to forcefully
impose medical treatment upon another against their stated wishes would be considered an unacceptable
violation of patient autonomy and bodily integrity. Moreover, genuinely forced feeding of the sort
undertaken at Guantanamo is not only contrary to the autonomy of the prisoners but also appears to be
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painful and to threaten physical and psychological harms while also, of course, sustaining life. Accordingly, a number of medical organizations have condemned force-feeding of prisoners, and some have
argued that the practice is not only impermissible but is also a form of torture and in violation of the
Geneva Convention.
The situation of ordinary prisoners is not straightforwardly analogous to that of other medical patients,
however. Prisoners’ autonomy is already curtailed justly as part of their sentence, and it is arguable that
they should not be permitted by the state to willfully end their lives by starvation, thus ending their just
punishment. So the state might reasonably force-feed under such circumstances. But these considerations
surely make most sense in the context of punishment imposed through legal sentence, precisely what is
lacking for many of the Guantanamo detainees. And in the case of Abu Wa’el Dhiab, he was slated for
transfer from the base to Syria until circumstances in Syria rendered that impossible. So it is unclear what
the legal relationship is between him and the United States and whether morally that relationship entitles
the United States to overrule his lack of consent and engage in forced feeding. An additional issue, raised
by the judge in the case, is that Dhiab had indicated that he would be willing to be fed enterally in the
Guantanamo hospital; yet the United States declined to do so, opting instead to feed him in the restraining
chair. And a final difficulty, the case is further complicated by the actions of a nurse at Guantanamo who
has refused to comply with military orders to participate in the feeding of the detainees. His case
highlights the possibility of conflict between norms of the medical profession and norms of the military
profession, with the conflict here centering around the provision of ANH (Olson and Gallagher 2014). The
issues raised by this and similar cases are still in need of adequate resolution, and they threaten to recur,
given the prominence of hunger strikes as a form of political protest, especially in prison.
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Ebola virus disease is a hemorrhagic disease characterized by intense flu-like symptoms including high
fever, vomiting, and diarrhea. Found primarily over the past 40 years in Central Africa, it appeared in late
2013 in Guinea, West Africa, was diagnosed in March of 2013, and spread to Sierra Leone and Liberia.
Cases have also appeared in Mali, Nigeria, Senegal, Scotland, Spain, and the United States. Additionally,
medical personnel have been flown from West Africa to a number of Western countries for treatment.
Containment of the disease in West Africa was initially hindered by a slow international response, poor
African medical infrastructure, and local suspicion at Western medical teams. Moreover, treatment
options in West Africa are poor: lack of resources and staff initially resulted in an inability to provide
quarantine and care for all patients, and some areas resorted to home treatment and quarantine. By
September of 2014, several Western nations had pledged a significant increase in aid; by December, the
epidemic seems to have peaked, although there are warnings that it might remain endemic in countries
such as Sierra Leone that have not managed to fully control its spread.
There is an obvious discrepancy between survival rates of Ebola patients who have been treated in
Western hospitals and those in West Africa. In the United States, for example, ten Ebola patients have
been treated and of those only two have died. There are a number of causes for the discrepancy, but one of
relevance in this context concerns the role of nutrition and hydration in care for Ebola patients. According
to a recent report in the New England Journal of Medicine:
The predominant clinical syndrome of EVD involves substantial volume loss due to vomiting and diarrhea. This requires
aggressive oral and intravenous volume repletion and close followup to avoid further complications and hypoperfusionassociated organ dysfunction. (Fowler et al. 2014, p. 6)
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The moral issues raised by the possibility of artificial provision of nutrition and hydration overlap
considerably with the range of issues addressed in “traditional” end of life ethics: suicide, euthanasia,
ordinary and extraordinary care, and the like. But because ANH involves questions of feeding and eating,
acts central to the human life, not death, this area of controversy takes on additional symbolic and
emotional weight. On the one hand, withdrawal of ANH can feel like an abandonment of solidarity with a
patient, while on the other, continued provision of ANH to a dying demented patient can feel like “forced
feeding.” Navigating these competing emotionally charged intuitions within the framework established
by end of life ethics is a crucial but fraught task for medical ethics.
At the same time, questions about feeding hunger strikers or hydrating Ebola patients indicate that the
questions surrounding ANH can diverge from those of end of life ethics in additional ways. Hunger
strikers are not terminally ill; and while Ebola patients are sick, it appears that artificially hydrating them is
part of a treatment for their disease; in this, they are unlike, say, PVS patients. Moreover, these issues raise
questions of military ethics and global justice, respectively, that are unusual in ordinary end of life
contexts. ANH is thus a complex and continuing moral issue in medical ethics.
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Q6
The ability of patients to be quickly rehydrated and to be provided electrolyte replacement is crucial for
the patient’s body to be able to stave off Ebola long enough to be able to defeat the disease. Inadequately
hydrated patients grow weaker and suffer other deficiencies, leading to higher mortality.
In the United States and other developed nations, provision of parenteral ANH to Ebola patients was a
given. But in West Africa, most patients have not been afforded this level of care. While it is impossible to
say what difference in overall mortality rate improvements just in this sphere would make, it appears to be
an area in which the proportion of benefit to expense would be considerable (Roberts and Perner 2014).
Food aid in general constitutes a large part of what is necessary to treat Ebola patients, but it is apparently
often overlooked and underappreciated.
The gap between developed and developing countries on this matter raises questions about global
justice in the distribution of healthcare resources. No doubt it is too much to expect Western-style medical
infrastructure to appear in West Africa in the near future. But a starting point for equitable distribution
could be meaningful improvement in the resources available to provide ANH to patients who are critically
but reversibly ill – not just Ebola patients but, for example, malaria patients as well.
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▶ Access to Health Care
▶ Advance Directive
▶ Applied Ethics
▶ Assisted Suicide
▶ Autonomy
▶ Benefit and Harm
▶ Bioethics and Politics
▶ Children and Ethics
▶ Coercion
▶ Compassion
▶ Conscientious Objection
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▶ Death: Good Death
▶ Dementia
▶ Disability
▶ Disease
▶ Double Effect
▶ Epidemics
▶ Euthanasia: Active
▶ Euthanasia: Passive
▶ Global Ethics
▶ Hospice
▶ Hunger
▶ Justice: Global
▶ Law and Bioethics
▶ Life: Sanctity of
▶ Life: Value of
▶ Military Ethics
▶ Natural Law
▶ Nursing Ethics
▶ Pain
▶ Palliative Care
▶ Palliative Sedation
▶ Persistent Vegetative State
▶ Person
▶ Principlism
▶ Quality of Life
▶ Religion and Global Bioethics
▶ Right to Die
▶ Suffering
▶ Suicide
▶ Surrogate Decision Making
▶ Torture
▶ Utilitarianism
References
American College of Gastroenterology. (2011). Enteral and parenteral nutrition. Available on-line:
http://patients.gi.org/topics/enteral-and-parenteral-nutrition/. Accessed 22 Dec 2014.
Brugger, E. C. (2009). Reply to the jesuit consortium. The Linacre Quarterly, 76(3), 283–290.
Brumback, R. A. (2004). Neuropathology and symptomatology in Alzheimer disease: Implications for
caregiving and competence. In R. B. Purtile & H. A. M. J. ten Have (Eds.), Ethical foundations of
palliative care for Alzheimer disease (pp. 24–46). Baltimore: Johns Hopkins University Press.
Buiting, H. M., et al. (2011). Artificial nutrition and hydration for patients with advanced dementia:
Perspectives from medical practitioners in the Netherlands and Australia. Palliative Medicine, 25(1),
83–91.
Cronin, D. A. (2011). Ordinary and extraordinary means of conserving life: Fiftieth anniversary edition.
Philadelphia: The National Catholic Bioethics Center.
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Finucane, T. E., Christmas, C., & Travis, K. (1996). Tube feeding in patients with advanced dementia:
A review of the evidence. Journal of the American Medical Association, 282(14), 1365–1370.
Fowler, R., et al. (2014). Clinical presentation of patients with Ebola virus disease in Conakry, Guinea.
The New England Journal of Medicine, 1–8.
Gillick, M. R., et al. (2000). Rethinking the role of tube feeding in patients with advanced dementia. The
New England Journal of Medicine, 342(3), 206–210.
Holm, S. (2013). Terminal sedation and euthanasia: The virtue in calling a spade what it is. In S. Sterckx,
K. Raus, & F. Mortier (Eds.), Continuous sedation at the end of life: Ethical, clinical, and legal
perspectives (pp. 228–239). Cambridge: Cambridge University Press.
John Paul II. (2004). Address to the participants in the International Congress on “Life-sustaining
treatments and vegetative state: Scientific advances and ethical dilemmas”, March 20, 2004. Available
on-line: http://www.vatican.va/holy_father/john_paul_ii/speeches/2004/march/documents/hf_jp-ii_
spe_20040320_congress-fiamc_en.html. Accessed 22 Dec 2014.
Olson, D. P., & Gallagher, A. (2014). Ethical issues for nurses in feeding Guantánamo Bay detainees. The
American Journal of Nursing, 114(11), 47–50.
Roberts, I., & Perner, A. (2014). Ebola virus disease: Clinical care and patient-centered research. The
Lancet, 384(9959), 2001–2002.
Shannon, T. A. (2006). Nutrition and hydration: An analysis of the recent papal statement in the light of
the Roman Catholic bioethical tradition. Christian Bioethics, 12, 29–41.
Taboada, P. (2014). Sedation at the end of life: An interdisciplinary approach. Dordrecht: Springer.
Tollefsen, C. (Ed.). (2008). Artificial nutrition and hydration: The new Catholic debate. Dordrecht:
Springer.
Uhl, L.W. (2011). Artificial nutrition and hydration for infants with life-terminating conditions: Rethinking the Catholic position. University of Tennessee Doctoral Dissertation (unpublished). Available
on-line:
http://trace.tennessee.edu/cgi/viewcontent.cgi?article=2321&context=utk_graddiss.
Accessed 22 Dec 2014.
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Q7
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Caplan, A. L., McCartney, J. J., & Sisti, D. A. (Eds.). (2006). The case of Terri Schiavo: Ethics at the end
of life. Amherst: Prometheus Books.
Keown, J. (Ed.). (1997). Euthanasia examined: Ethical, clinical, and legal perspectives. Cambridge:
Cambridge University Press.
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Author Queries
Query Refs.
Details required
Q1
Please check if all occurrences of “he” in this sentence should be changed to “he or she” for gender
neutrality.
Q2
Please check if “she” should be changed to “he or she” for gender neutrality.
Q3
Gillick (2001) has been changed to Gillick et al. (2000) as per the reference list. Please check if okay.
Q4
Finucane (1996) has been changed to Finucane et al. (1996) as per the reference list. Please check if okay.
Q5
Please check if “followup” should be changed to “follow-up.”
Q6
Entry titles “Global Ethics,” “Life: Value of” does not match with the list of entries in this encyclopedia.
Please check.
Q7
Please provide volume number for Fowler et al. (2014).
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